A Breast Cancer Diary – Détails, épisodes et analyse

Just a quick episode reflecting on Heather's story and the difference between "functional" or "integrative medicine" and "alternative" medicine.

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Heather's web site is: https://heatherjose.com/
and her podcast is here on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos

Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/

Transcript:

 Those of you listening on the day that this episode is released, happy Easter to you if you celebrate Easter. I'm just here again just me reflecting on some of the things we talked about in the last episode with my guest, Heather Jose. Her episode was packed full of controversial issues and I'm just gonna cover a couple of them today.

And also wanted to give you a heads up that I may not be putting out episodes in the next couple of weeks. I've had a couple of guests cancel and have to reschedule, and then my dad just passed away this last week, and so I'm not able to reschedule with them soon. I do still intend to put out, um. Maybe three or four or more episodes before I take a break for the summer though.

So I will be back at some point probably in May and not in April. Um, but don't worry, I haven't finished this season quite yet. So just to get back to last week's episode and some of the topics discussed with Heather, I wanted to talk about her complimentary or integrative, uh, approach to her oncology, the fact that she worked in tandem with both the conventional system and the lifestyle medicine system.

This can be really confusing for folks who aren't familiar with. The world of functional medicine or even nature paths. There are so many different types of cancer experts, so-called experts in the world, and some of them are, are highly, you know, board certified and backed up with lots and lots of education and others of them may not be.

All of them claim to have some interest in some kind of research, or usually they do, but not all of them have really solid research behind their practices, and so this can be really confusing and really expensive and kind of scary for the typical patient to explore. I have a background, personally,

I'm a functional nutritionist, so I have a lot of experience with telling these kinds of schools of thought apart. And unfortunately in cancer there's a lot of quackery. I think there always has been. Throughout history with cancer. There's a lot of, um, people making false claims or really, really naive claims without a lot of research behind them.

And this. Movie that we talked about that Heather and I were talking about briefly in the last episode that just came out on Netflix recently called Apple Cider Vinegar is a really good example of a couple of different really scary elements, um, in this kind of shady practice. In the movie Apple Cider Vinegar, which I'm not sure if you'll be able to watch as a cancer patient. For me, it was excruciating. It took me a couple of months to get through this very short series of episodes because it was just so painful and uncomfortable and cringey for me to watch. Just, just a really unfortunate story that seems to be somewhat true, um, that takes place in Australia.

But, uh, there were two elements that were disturbing. One was that this one character in, in the film, which the film kind of was focused on, was completely lying. She was a sociopath and coming up with dietary measures for people to fix or. Cure their cancer through As someone who had never had cancer and was claiming to have cured her own cancer, that really never existed.

Of course, that is a bizarre and disturbing story to watch for anyone. I. But then there were a couple of other characters in the movie that were kind of,, carrying on a claim for themselves, and they did have cancer. they were looking into all the alternative to conventional medicine options that were out there in the world.

There were things in Mexico and South America and, um, different in indigenous practices and. , it didn't go into all the details of all of them, but the really poignant part of the story was the death of, of one woman who became kind of a thought leader and influencer of other cancer patients. And all the while her cancer had been progressing and she was denying that.

And, it's a really good wake up call for those who are seeking the alternative kind of solution to cancer in in our world right now. I think we need to have that kind of sobering reality brought to us every once in a while, and yet people like my guest, Heather Jose, do feel like lifestyle changes, diet and exercise and stress.

Related and sleep related changes in their lifestyle have made all the difference. So there is, there is something to the lifestyle end of things. And I think for me anyway, in my, in my research and my exploration, I have found that functional medicine is the best kind of mediator of the two, um, of natural and integrative and complimentary medicine.

Approach to cancer as well as medical, conventional medical, because most functional doctors are actually MDs. They're, they're fully trained in the conventional system, and then they go beyond that to get trained in the lifestyle medicine, complementary or integrative, depending on what. Label you wanna choose, and the difference is that they look for the root cause

so they're going back to the origins of the disease, which only makes perfect sense to you if you're a scientist like it. It would make sense to most people who are scientifically minded and Dr. Block. My impression is, um, when Heather went to Dr. Block in, um, Illinois, that he is one of those functional type doctors.

He is an MD so he is certainly a, a full fledged oncologist, but he's also looking into some of the other ways to compliment that with natural and lifestyle approaches. And I'm really hoping myself that he does not get shoved under the bus as we are watching films like apple cider vinegar, uh, because there are very few people like him that bridge that nicely, that really embrace both sides of the continuum.

And I think that is where the most hope lies personally. Um, I've talked a little bit about my enthusiasm for exercise oncology. As a nutritionist, I have seen literature. Across the board with nutrition and it is really messy. It's really hard to establish whether or not food can be the reason for certain outcomes, positive outcomes, and lowered risk when it comes to cancer, because food is just really hard to isolate in our, you know, study of our habits.

It's, it's not something you can. Crystallized down to one behavior, well, the way that science kind of needs us to do. But exercise and sleep and stress are much easier to get crystallized down to a single behavior or outcome. So I have a lot more confidence as a nutritionist, even as much as I've studied and as much as I do believe in nutrition, I have more confidence in exercise and stress reduction.

We, we are so young in the world of science, and that's why it breaks my heart that so much science is being, dismantled right now with our current political situation.

But I just wanted to clarify kind of how I separate out these things, and I just wanted to say again, how blown away I am that Heather is out there sharing her story every week, just the salt of the earth, the most down to earth. Human being, not making any wild claims. She's the opposite of these personalities that you see in the Netflix series, apple cider vinegar, where they're just so confident about the reason that they got better, supposedly got better, which neither of them did.

Um, whereas Heather has stayed cancer progression free as a stage four patient, which is remarkable. It's not unheard of. There are other women like her who've lived 20 or 30 extra years with stage four cancer without. Any extra meds, even like her not having a whole lot of lifestyle inhibition by the drugs that she takes, but, uh, but that is pretty rare and I just love that she's sharing incrementally how she's doing week by week and staying on with her kind of. Regime of, of strict lifestyle habits with diet and exercise and stress, reduction in sleep, habits to increase the quality of her sleep.

So I just love, I love having her in the cancer community at large, not just breast cancer, but the larger cancer community. 'cause I think she gives people hope. And one of the things that Heather and I talked about was the placebo effect, the fact that. Patients do better when they believe they're doing something themselves that makes a positive difference. And I think this is true with any patient taking just about any drug. Um, for anything really, it's, the drug is so much more powerful when we believe that it's making a difference.

But it also can be true of our lifestyle choices, our dietary habits, our sleep choices, our stress management. You know, our exercise habits, all of those things, if we believe they're making a big difference, that makes our body all the more powerful, somehow in some magical way that we don't understand and that science can't really capture.

But it's called the placebo effect. And Heather was saying that she's a big, a big fan and believer in that in mindset, um, and mindset. Is not just a hocus pocus, you know, belief in something that's false, but it's a belief that the small things that you're doing, even though you can admit that they're small, make a big difference.

And so I think this is a great reminder to all of us to choose something, you know, whether it's green tea, like her first oncologist told her to just to go out and start drinking green tea. And then we'll talk about getting rid of this cancer next week. Um, whatever it is, eating more vegetables, eating more fruits, eating more whole foods and less, um, dirty meats and dairy products maybe.

I would just encourage you to choose some small thing that you can do that you've decided is warranted. Whether it's something you've read or a doctor's told you, um, do some small thing, not believing that it's gonna cure you or make everything get better, but that it will make a difference. And feeling empowered in that process, I think makes a huge difference for all of us.

There is one other movie that just came out on Netflix that I was thinking about talking about 'cause I just saw it today. Um, having just lost my dad, I'm really interested in some of the choices that we make around the time of death. And one of the things I wanna do sometime in the next year is to take a course on end of life doula/end of life planning, because I have friends that have been diagnosed with stage four and I wanna help them--people like Danyel that I would like to help plan the last days and weeks and months of their life. Um, I'm, I feel equipped to do that. And so I'm always interested in movies that talk about death and explore and watch death and few movies do this very well. Like my friend Christine Handy was saying in, in my interview with her, most movies about cancer patients will show them getting sick and then dying immediately, and boom, that's the end of the movie or that's the end of that scene or that person's character role in, in whatever story it is. They don't really address it. They don't. Stretch it out and watch it because it's uncomfortable, it's painful to watch.

And this movie that just came out on Netflix called The Room Next Door with Julianne Moore. And Tilda Swinton is a really good example of that. It's not a comfortable movie to watch. It is the least entertaining movie that you've probably ever seen. It's an awkward, drawn out movie with lots of silent parts and hesitations, which as Americans were pretty uncomfortable with, I think.

But if you're interested in the subject of death and especially euthanasia, I think that it's a really interesting movie to watch. I didn't love the acting. I'm not a huge fan of Tilda Swinton. I just don't love her acting for some reason. So I don't recommend it as an art piece or something to admire, but just something to.

Draw your thoughts out on death and as a cancer patient, I think we can be less afraid of recurrence or stage four diagnoses if we are willing to ask some of the harder questions about what we would do if we were diagnosed and if we were facing death. And I think this movie in particular really addresses it well.

I think it gives death less of a sting. It makes it less of a threat or less scary. Of a topic to think about. If we can think about all of the options, all the ways that we can deal with the pain or not deal with the pain. Um, with my dad having passed away just a few days ago, I really faced this myself, um, in terms of just being really insistent that he not be given measures to prolong his life. He was already psychologically suffering from dementia. And it was really important to us as a family not to prolong that suffering. And yet in the moment you always feel a little bit strange telling a doctor that the doctor we were dealing with was really great at supporting us through that decision and not making it awkward, but it's really good to practice. I got to practice with my mom and now I've gotten to practice with my dad, and that makes me more ready to be able to make those kinds of decisions, awkward as they are, socially hard as they are, for myself at some point. If you're interested in those topics, if it's not too scary for you, if you're in a good space, not too stressed out by the political situation right now, then you might check out that movie on Netflix just as an educational opportunity.

I just love Julianne Moore. She really takes on roles that explore these bold subjects a lot, so I appreciate her work in that respect.

So I will probably be away for a couple of weeks dealing with my family business. And if you'd like to be in touch with me, I am on Substack. That's the best way to hear from me every week. And, my substack is called abreastcancerdiary.substack.com. You can either subscribe through email or if you get the app, you can subscribe on the app and then check it out on the app and not get an email, and I will talk to you soon. Take care friends.

My guest Heather has been thriving with metastatic breast cancer for nearly 27 years! How did she do it? She feels that it's a combination of things--not necessarily the trial on stem cell therapy combined with high-dose chemo. She feels that her long-term drug, Faslodex, as well as lifestyle choices around nutrition, exercise and mindset are key in her success.

Heather's web site is: https://heatherjose.com/
and her podcast is on YouTube at: https://www.youtube.com/@ImStillHereCancer/videos

Kathleen does zoom based peer navigation/mentoring sessions now. Schedule a session here for a sliding scale of $35 to $95 per hour long session: https://kathleenmoss.simplybook.me/

Transcript:

Today's podcast guest is Heather Jose. She's from Mount Pleasant, Michigan, and she's an occupational therapist, and the most remarkable thing to know about her is that she's a 26 year post metastatic breast cancer survivor and thriver. And that's a main reason why I have her on the podcast today.

I've never met anyone that has lived that long and thrived that long after a metastatic diagnosis. I'm so excited to have you, Heather.

H:

Thank you. It's great to be here.

K:

Thanks for coming on. So a huge part of your story is, well, you're, you're a podcaster too, and you tell your story in an informal YouTube and podcast setting. Uh, there in your home with your husband usually, and sometimes your kids are, are joining to tell their part of your story. Um, so people can learn about your entire journey just by looking at back episodes of your podcast.

But. I wanna hear what you feel you did differently than maybe some of the people you meet who have had metastatic breast cancer and how your path was maybe a little bit different than the conventional path after being diagnosed. Oh. Start out by telling us if you had an early diagnosis before your metastatic diagnosis.

H:

No, I was diagnosed de novo, so stage four from the start. Um. I think, and I, looking back, I was 26 when it happened, and I think some of what worked for me was being a little bit naive about a lot of things, right? I look at, my daughter is now 27 and doing great at life, but you know, there's a lot that you learn over the course of time, right?

So I think it helped me to be able to just kind of go into this going, well, okay, how do I, how do I stay here? How do I figure this out without knowing, I don't know, even the gravity of all of it.

K:

Sure. Absolutely. And did you, how many months or years did you stay with just conventional treatment before branching out into integrative treatment?

H:

Well, the, my first doctor told me to get my affairs in order, I stayed with him for about 20 minutes and we were done forever. The, the next oncologist that I talked to was the next day. She told me even on that phone call, "drink some green tea, eat some fruits and vegetables and we'll start killing cancer on Monday." And it was so empowering, like, SO empowering. Here's a oncologist from the University of Michigan who you know, is renowned in her field and, and, she's telling me like, go get some green tea and it was the best thing ever for me. And that of course kind of was like, okay, what can I do? so right from there we started to do some research.

And when I say we, I should say my mom, because I knew early on that I could not handle all the information coming in. I knew that it, I just needed to kind of protect my mind and kinda keep myself in a bubble. So she started doing, some exploration of, you know, what else is available that could help kind of bring pieces, of knowledge to the table. Because even at that time, and I, I know nutrition's tricky anyway, and I know you've talked about some of this, right? But you'll, somebody will tell you "a calorie is a calorie" and somebody else will say, "no, you have to do this." And we wanted somebody who was like, no, what we would like you to do is this, and the reason why is because the research has shown the way to go. So we actually found, um, an integrative oncologist early on. I, I was seeing him, I was diagnosed in December and I went to see him in February.

K:

And this is Dr. Block.

H:

This is Dr. Keith Block. So, yeah, and he's, um, he's in Skokie, Illinois now. He was in Evanston at the time, but they're just neighboring towns. And, um, it was so, it felt so good to me to be there, to have them kind of say, yeah, we'll, we'll help you kind of put together a plan, but also the reason why we're doing this is we're gonna look at these labs, or we know what this study says. All of that kind of information was great. I felt like I could just, you know, really rely on them.

K:

So when you went to see Dr. Block, did you leave the green tea oncologist behind or did you continue to work with her?

H:

No. She's still my oncologist. I mean, and, and I went to Dr. Block saying, Hey, I've got this great oncologist and what do you think of this plan? And he said, I think that's a great plan. And here's what, you know, we can add to it. So it was kind of nice to have kind of a second opinion all the way through, um, the first, the early years, and then also have this nutritionist and, and different people on board.

K:

Okay, so Dr. Block worked in collaboration with your oncologist. Would you say that?

H:

I would say Dr. Block, um, helped me put together the other pieces of the puzzle that I was really interested in, in terms of nutrition, supplements, he was talking about visualization, encouraging exercise, which my regular oncologist was also doing. It felt really good to have this kind of, not that they were talking a whole lot, but to have both of these people that I really trusted telling me, yeah. "Do these things."

K:

And they actually agreed about what these "these things" were? Wow. That's great.

H:

Yeah. My oncologist has always been, um, I think ahead of her time you know, in terms of recognizing what our bodies can do with proper nutrition, exercise, all of those kind of things.

K:

Okay. I was gonna ask you if you ever went back to her now, you know, 20 some years later and said, why the heck did you tell me to go and eat green tea? But it sounds like she has continued to be consistent in her endorsement of things like green tea and fruits and vegetables.

H:

Absolutely, it's been a while, but we ran a 10 K together once. She's very supportive of being active and healthy and she will always. Um, check in on all of those kind of things. What am I doing to work out? How am I eating all of that?

K:

Okay. Now the $10 million question, do you feel like your lifestyle choices in terms of working out and eating right, have made, and does your intuition tell you that those things have made a difference in your longevity?

H:

I think absolutely. I think part of it is that you're trying to build what. least at the beginning, I was trying to build the healthiest body possible so the treatments could be as effective as possible,

I wanted to kind of eliminate any of the extra work that my body was maybe having to do, you know, and, and give it really great fuel. That was my whole, know, process in that was how can I make my body as efficient and effective as possible?

K:

Okay, so you're saying you wanted your body to be in good shape so that the treatments could be effective, so you weren't replacing the treatments with lifestyle. I think that's a really important distinction.

H:

God, no. Absolutely not. Not at all. And there's this other big piece, which is mindset. So for me, I was kind of like, I need to believe in everything that I'm doing, and being able to believe in these things then helps me kind of put together this whole picture. The medicine's working and it's doing its job, and I am doing my job by, you know, keeping myself as healthy as I can be.

I mean, it's, it's a whole picture.

K:

Yeah, so Dr. Block is a, a medical doctor and he's an integrative. He has an integrative center, I think. So let me just clear clarify for the listeners who don't understand the difference between integrative and alternative, I. Because there's this really crazy amazing, um, series on Netflix right now that just came out called Apple Cider Vinegar.

That is, I think, not defining these things very well. And it really strikes terror into some patients when they don't have definitions. So alternative therapy, uh, natural therapies can be offered instead of conventional medical treatment. And that's, that's what we call alternative, but integrative means it's a natural approach or a lifestyle approach that works hand in hand with conventional medical therapies, and that's what, obviously that's what you've chosen and what Dr. Block has chosen. He's not saying "you don't need chemo radiation, you don't need those oncology drugs or the hormone, suppressors."

He's saying, do all of that and let's do what we can to get your body into the best shape it's ever been in so that your body is resilient. Against the negative effects of those treatment, but also receptive to the positive effects of those treatments. Okay.

H:

Perfectly said.

K:

Okay, cool. 'cause I want Dr. Block to not fall into that camp that is being, you know, criminalized--rightfully so. I think! ...by, by this, this new wave of, of truth telling in cancer where, you know, the, the Hirsch therapies in the movie, apple cider vinegar down in Mexico is, is really the Gersen plan or the Gersen therapy. And that really is an alternative. They use enemas and juicing instead of chemo and radiation

Typically, I don't know what they're doing now, but typically, um, that's what they've been seen to do. And a lot of other podcasts that I've listened to that are based on health and nutrition and lifestyle will actually give. Those therapies, some airtime and some credence, and that can be really confusing for patients.

So I just want patients to know that. I would not be inviting a guest on my podcast that would endorse that kind of, um, miracle Cure kind of thinking. And, and Heather is the crystallized, you know, perfect guest to endorse the. What we call integrative, which most cancer centers across the country right now are embracing integrative therapies. Things like, you know, those complimentary therapies like acupuncture and massage and nutrition and activity, physical activity.

So cool that you can tell that story well and tell such a successful story. Um, while, while telling that, but tell us about what kind of traditional or conventional treatments you did take part in.

I know you did a clinical trial, uh, maybe you could tell us a little bit about that?

H:

Yeah, so again, I was diagnosed in 1998, so this is, and things have changed a lot during that time and I think it's important to state that because sometimes people come to me and they want, they latch onto one part of my treatment. Treatment as if it was the thing that was everything for me. And I don't really, I don't believe that that's the case, but I started with four rounds of chemotherapy. Um, I. had a five cm tumor. Um, by the end of that treatment, my tumor was undetectable, but we still had a lot of things going on. And the next thing was that I, um, I did a double stem cell transplant. So a double stem cell transplant was a clinical trial. this is something that people will sometimes say, how do I get that? How do I get that? my answer to that is that what was. Proven through the research is that there are better ways to address cancer than a stem cell transplant. Like this is high dose chemotherapy, that not everybody comes through .

They take you down to kind of zero, and then hope that your trans, your stem cells will regenerate and give you back what you need. Um. It's just, it, it was found that it wasn't the most effective way to go. And right on the heels of all that was targeted therapy and all of these things, these drugs that are so much more effective and also, uh, less dangerous in terms of side effects.

So. Um, after the stem cell, I did a double mastectomy, and after the double mastectomy I did radiation, which was kind of my, my year of treatment. And then from there, went on to start, drugs, like I started on tamoxifen, and it was also on a bone strengthener because of the bone mets.

K:

Sure. Now, just to clarify your clinical trial, it sounds to me like from what you're saying you were given stem cell therapy in cooperation with high dose chemotherapy and in the thought that the stem cell therapy would help your body to be more, um, your body would recover better from the trauma of high dose chemotherapy.

H:

They use them because. In traditional chemotherapy, they're, you know, they're constantly monitoring, you know, what those, those levels are. And with, without, um, the stem cell, they, the thought was they could bring all of the levels down even farther and maybe kill more or any lurking cancer cells

K:

And they did that through a more intensive chemo regimen or through some other, okay, gotcha. Okay. So you endured more chemotherapy than the average patient did at that time, and probably today as well. And the way that you recovered from that was the stem cell treatment. Gotcha. Okay.

H:

I mean, the stem cells are necessary for you to be able to then come back to life. Yeah.

K:

I think most people listening to your podcast and to your story will then say, gimme some stem cell treatment please. So how do you respond to that?

H:

I just, I enduring, it was really hard. I mean, I never, I, the closest I came to death was during that time. Also the cancer was undetectable before we started it. Right. And I've been stable on a medicine that is easy for me to endure since 2004 Is it that the one piece? I just don't believe that you know.

K:

Okay. What's the one medicine you've been on all this time?

H:

Faslodex, which is also called fulvestrant. Yep.

K:

Tell us about that one and, and how you feel while you're on it.

H:

Yeah, so I started on that in 2004. We kind of did Tamoxifen for a couple years, had a slight, you know, change in the bones. I've never had anything, big happen. But, , so Tamoxifen went to Arimidex for a couple of years, and then same type of situation. My doctor said, Hey, there's this new drug, it's called, you know Faslodex, I'd like to try it. And I was like, okay, it's. Um, at the time it was one injection, um, and just into your hips, and I tolerated it super well. Um. Because I started it so early, later, once it went through all of the testing became a, a double dose of that. And I've been on it so long, we're now back to a single dose. Kind of like, what, you know, we've talked about, because I've been stable for 21 years now, or 22 years now. It's been, it is the question of, you know, what. What do we, how do we continue this journey? the medicine necessary? Um, you know, what does that look like? So, um, the, the problem with the faslodex for me, after so many years of injections is, uh, some scar tissue in my hip or my lower back area, to be able to do one injection versus two just really helps me from a comfort level, um, you know, endure that. And I felt very comfortable with that because I was on one dose a long time ago.

K:

And what other side effects have there been any other immediate side effects?

H:

I am not a big side effect person.

I'll be honest, I don't really, I even from the very start of things, I've always kind of said, "if there's side effects you need to, like, please tell my husband or my mom or something so I can kind of like bounce things off of them if I'm feeling something." But I know how my brain works and I don't wanna manifest things you know, I don't need to.

K:

Oh, okay. So you're saying you never looked into the side effects and therefore you never experienced them. Is that what you're saying?

H:

That's why I'm saying is, I mean I learn about side effects sometimes because they happen, talk about from a bone standpoint, the Biphosphonate I was on, there's also things that, like with a Faslodex, it's super easy for me to tolerate. I'm sure there are some side effects that. People talk about, but for me it's in and out. I actually got my treatment today. Um, there's no, just, easy and I appreciate that,

K:

Yeah. Yeah, it's a very different drug. So did you get onto Faslodex because of a clinical trial initially?

H:

It wasn't actually a clinical trial, but it, it just come out like, so they were still working on dosing at that. So, yeah.

K:

So it sounds like you, you're giving it five stars in terms of the treatment.

H:

I mean, anybody who can walk in and out of a cancer center you know, maximum 10 minutes, that's, I think that's five stars, so, I mean, you know, maybe I turn on my heated seats on the way home. Like, okay, that's, that's good. Drink some extra water. I mean, okay.

K:

Brilliant. No, I love it. So why did you stop taking Tamoxifen?

H:

Uh, because there was a little bit of a change, so we just moved from like a, a change in the bone--a little bit of progression. has always been like, we're moving to the next thing,

K:

Oh, you mean there was a cancer progression in your bones? Is that what you're saying? Okay. So it wasn't responding to Tamoxifen. Okay.

H:

Yeah. I mean, we can talk about all that too, because over the years I've now learned to do, to do bone biopsies.

And I've had two bone biopsies that have come back clear. So it's hard with bone changes to definitely say this is, um, you know, the cancer.

Right.

So especially when it's in little things. Again, I'm not an expert on reading scans by any means...

K:

Yeah. No, that's good. I think that just an overview is good. I, I don't wanna get into too much medical stuff 'cause we're, I'm not a medical person, so I can't defend and define those things. Um, but I do wanna ask you about the double mastectomy because most, almost all patients who are diagnosed de novo, like were, do not get a double mastectomy, even if they want one. So what happened in your case that made that different?

H:

Well, that is, I would consider that a new way of thinking. So that was not the protocol in the late nineties. That has changed since then. And I, I think there's a lot of, um, I understand why women sometimes are scared because they don't have a double mastectomy, but I also feel like being able to keep your breast is really, um, invasive a great thing.

K:

Yeah, so you, it sounds like maybe miss your breasts and, and feel a little bit of regret about that.

H:

Yeah. I mean, I can't, I can't regret something that I didn't have the opportunity to make a decision on. Right. But I didn't realize the impact it would have on me, the loss of my breast in terms of, I. image, uh, sexual pleasure. All of these things were, there's a big piece of me that is missing. of course my first priority is to be here.

But I think by just, you know, have, when we have these, double mastectomies and you know, do reconstruction, it's not like they're the same. They're different.

K:

Do you wanna talk a little bit more about that? How is, how is it different? I know you went a few years without breasts, so you were flat for three years.

H:

Yeah, and I'll talk about that too, like, so when we did my double mastectomy at the time. I was offered reconstruction and my whole thing was like, no, uh, I know it's, I mean, I thought, at least at that time, I was like, this is a procedure that can be quite painful. There's a lot of pieces to it. And so my only thing, I just wanted to be healthy as soon as possible. And I was like, I don't mind being flat. That's, that was fine with me, and honestly. was fine with it. One of the reasons that I chose to have, uh, reconstruction was because. It can, and it can be very painful to have just kind of your sternum exposed.

I had young children at the time and like that head coming back into a couple times, sent me skyrocketing. And so I was like, I am willing to look into this. And I was also a couple of years out and feeling really good. I felt feeling strong enough to be able to take it on.

'cause I knew it was a big and it, it was a big procedure, so...

K:

So what were some of the ways that it was a big, a big deal?

H:

The LAT flap. So muscle from the back come, come around to the front on the left side and then just expansion on the right.

Um. It just, it was painful and I think the results were okay. When you look down and I have a shirt on, it looks like I have breasts, but nothing more. I mean, I had said to my husband a long time ago, like, please just don't even, don't pretend to like them. Don't pretend like it just doesn't. That's that part of my body is gone. is a different or something.

K:

Were you more comfortable with the flatness being touched or?

H:

No, I didn't feel like I, again, I don't know if I gave that enough time over now that it'd be many, many, many years. I think it always felt very tender to me. Um, but um, yeah, I. I was just surprised by all of that. And also there's no talk about it, right? When we're, when those things are happening, it's all very much like, "oh, but we can do a reconstruction and you'll look just like this and you can choose what size you wanna be."

K:

And it's all like, a positive thing.

H:

And it, but it, there's no talk about the fact that, you know, it won't feel the same and your body won't interpret it the same. So.

K:

So you have 23 years. Did you get, so you got a lat flap you said on one side, and then did you get an implant on the other side?

H:

I have implants on both, on both sides--the LAT, the pocket on the left side with a LAT Flap.

K:

Oh, okay. So have you in all of your years, had a replacement of the implants?

H:

I did. I had 'em replaced a couple of years ago.

K:

Oh, good. Okay. And had they broken down at all in in that long time? No. They haven't.

K:

So you made it 20 years without them breaking down, it sounds like.

H:

Yeah. And the the side without the lat flap had kind of fallen a little bit. Like it was just a little bit lower. Um, but it was still fine. I do have saline implants also. I didn't do silicone, same as the new ones or the first time around.

K:

Oh, okay. Okay. So saline maybe are longer lasting than silicone.

H:

I don't know it so many things, you know, things come and go, but there was talk, a lot of talk about silicone implants at the time that I first did the surgery, and I want to be even having to consider whether or not it was safe or whatever. And so I did saline.

K:

All right. And then you said the younger children, I mean, sounds like you're still pretty protective of your, your breast, your chest area after getting reconstruction. But did it change your relationship with your kids or did that, did that have the desired effect?

H:

Um, I dunno if I've ever really thought about that. I think it's, I. The reconstruction had the desired effect of, I, yeah, I don't know in terms of, it made me able to do the things I wanted to do, I guess, and not have to consider necessarily. I. Clothing choices in the same way. There is some of that too, and again, I feel so old saying this, but like, you know, clothing changes and at times it's more fitted and at times it's not. And, it might've been all of those things, but...

K:

Well, and you were 26 when this first happened to you, and now you know, you and I are the same age, and I, I mean, looking at your story, from my perspective, I've just now given up my breasts after having them for, you know. 40 years or whatever, and you were just getting into the place where, as a woman, we become comfortable in our bodies for the first time.

H:

I didn't, and again, I just didn't even understand that, like the pleasure that I did get from them in a sexual encounter or any of that kinda stuff. I didn't, I, of that was talked about. You know, wouldn't have changed, uh, the protocol at the time. I, I do understand. Or I, I am, I guess in some ways glad that there is some preservation of breast. I just don't think that it's very easy for women to recognize why, you know what I mean? I also understand the, initial urge of get 'em, get it out, get it out, you know, kind of

K:

So it sounds like you're supportive of our current standard of care, which says women need to keep their breasts if they're de novo.

H:

Well, I think I recognize. Uh, probably where some of that came from. I also, in speaking for women who are stage four, do want them to feel like they have access to the highest level of care so hoping and assuming that the research has been done that really, by preserving breasts, it's not changing outcomes.

K:

Yeah. Yeah, it seems a little bit illogical. I was talking to Leslie, another podcast, uh, guest about this who's, who's lived quite a few years also past metastatic diagnosis, and it does make sense to me that you would think that the scans were less. Likely to catch something if you have all this breast tissue, especially if it's dense breast tissue.

Um, but I guess the thinking is that you're gonna catch it if it's systemic, you're gonna catch it growing in multiple places on the scans, even if you didn't catch it in the breast. Um, there, there are other ways to catch it in other places, but yeah, it does seem like you're kind of living with the enemy still when you have the breasts still.

H:

that's a great way to put it. Yeah.

K:

And you were married when you were first diagnosed? Yeah.

H:

I mean, again, some of that is like, thank God for like getting married young and you know, we talk about, my daughter was 14 months old when we, when I was diagnosed and like, she's 27 now. So, and I just, you know, we kind of. Looked at each other one day and said, oh, I guess, I guess we could have kids and we got pregnant, and I wouldn't have her without that.

You know what I mean? It's one of those things that you just go, I guess thank God for again, just kind of not really always thinking things completely through.

K:

So did, were you aware of when you became infertile? Like was it really clear to you because of the chemotherapy that you lost your fertility?

H:

Um, well I had a two sentence, maybe three sentence conversation with my oncologist, which was, um. My mom was in the room with me and my doctor asked were, um, you, you know, she's like, I know you have a daughter. Were you planning to have more kids? And I just kinda looked at her and my mom kind her finished and said, you were planning to have more kids?

And I said, yeah. And she goes, that won't happen.

K:

Did she explain why?

H:

Because of the chemotherapy, they were doing. Yeah. And I never had another period after. I mean that, so I've been, that's now being 26 years out. I mean, it's really for me, I've been in menopause for 26 years. I'm 52

Yep.

and there's so much talk. About menopause right now and HRT and all these things that are great and things that I'm fine with, but I'm like, what about for those of us who don't have access? Like I, the thing I'm wondering at this point is how do I preserve my body that has been in menopause for 26 years? That usually, you know, is how many years of a woman's life that they're in menopause. Like, I need to double that. So what are the, you know. Answers for me and what should I be focused on in terms of menopause? So.

K:

Have you come up with anything?

H:

No, I, not really. I mean, of course just general health and lifting and, you know know those basic things, but I would, I actually have been kind of thinking about, I need to some research about finding, maybe finding a doctor who will speak to menopause, um, in, you know, women you know, that have had cancer because, um, while I'm excited to. Find out and hear that the HRT trials were completely botched and whatever ago, and that HRT is something that is accessible for women and maybe a great thing, it's not accessible for me. Right. And for for many people. So like, what are the other answers?

And you know, I think because we're, we can't replace estrogen and progesterone, we can't do that. So like. How do, how do we our body going?

K:

Yeah, I know a lot of breast cancer survivors are taking vaginal estrogen because there's a, a bunch of research that proves that it doesn't go into the whole system. It doesn't act system systemically. Um. But yeah, otherwise we're not allowed to take HRT.

Hopefully we'll get more workarounds besides just the vaginal application.

Yeah, and I've used some of those in the past too, and it's not been a struggle for me, um, recently, you know, but yeah, the access is just not same.

K:

Yeah. You're pretty open about your marriage and your family and your podcast, so I feel a little bit more free to ask you about that. So, um, when your, your husband learned about the infertility and chemo link, did you have a time of grieving? Did you, were you, were you able to process that together back then, or more recently?

H:

I think it, early on it was really just survival. Like we didn't have time to process it. I think it's, it's weird how it shows up for me. Um, definitely have grieved. Uh, not having, um, not being able to have more children biologically. And it comes out in weird ways. Um, in fact, even just probably less than a month ago, I was in a work situation with colleagues that I really liked, all women that were talking about how many children they had and they planned to have and da, da da, da da. And it was just that, that talk that. bothered me when I was in my twenties and even now, to hear people talk about pregnancy as if it's completely always gonna happen and go perfectly well, uh, is really hard for me. And I actually walked out of this conversation, I said, and these are the conversations I leave, and I left. they were like, oh, I'm so sorry. And I was like, no, you're, you are welcome to have those conversations. But that's just. Again, living took priority over everything. And there, there were losses, right? There's

K:

Yeah. Yeah. There's piles of losses right then in that beginning session. Right. Like too much to process, I imagine.

Yeah. And you had an adoptive child before you were diagnosed.

H:

No, afterwards.

K:

Oh, after, so I thought you had said you had kids. Okay. So Right. Was it really soon after. Okay. Soon after.

K:

Okay. So when you were talking about your sternum and that being sensitive, it was because you had adopted him pretty quickly.

H:

He came home, he was 18 months old when he came home, but we did, he came home in 2002 and I was diagnosed the end of 1998, so yes.

K:

Okay, so did your adoption process go pretty smoothly?

H:

Um, I would say yes. Um, I don't know much about adoption and how it's changed over the years. Um, I, I had kind of, I found something that was, I was able to apply to a bunch of agencies and say, would you work with somebody in my situation? And I had an agency reach back out to me and say Yes. and from that. Side of things. It went great. Um, international adoption, I think there's always challenges and like our process literally took 18 months and nine 11 happened in the middle of it. You never know, know, what's gonna come about, you know, we're, it's been an amazing thing, the whole, the whole process.

K:

Right, of course. So you did an international adoption, it sounds like, and then what was the questioning like about the fact that you had a metastatic diagnosis? Like, did people really know what that meant, do you think?

H:

I don't think so. I mean, I'll be honest, I think, um, we got letters from a couple of doctors that said that I was stable at the time and, you know, um, definitely that my husband was very healthy and that type of situation. And I, I think I. It? Yes. People's. Um, I, it might be different now. I think metastatic breast cancer is a little more understood now than it was then.

K:

Yeah, I think it's pretty much assumed that a young woman who's gone through even non-metastatic cancer and has become infertile is a little bit of a risky bet you know, in terms of, of adoption. So it's remarkable that your story is here for us. Like, I think that it tells us that women should try, I mean, it's heartbreaking to try and fail, but it's, it's still possible perhaps, especially if you're married.

other thing is like, you know, life is risky also. I get it. That, you know, the diagnosis. Is something that you can just brush off. when I think about, um, wanting to build homes, they're, you know, and, and have children. It's for a lot of reasons. And, and I always, like, I always fall back on the fact that without me, my husband is a really good dad. And that's, and that's important.

K:

Yeah. I love to see you and your husband on the screen, and it's like every single episode you have, it's like he's never not there. And I'm always blown away by that. There are a few instances where I've seen other breast cancer advocates in this community, and their husband is always with them, but it that is pretty rare.

And he's not like an effeminate guy. He's a pretty guy's guy. Like he's a, he's a very masculine man.

H:

Well, it's funny too that you say that because like he is, he's so supportive of me, but we're also very supportive of each other's things, right? So like, yeah. It's not like we're together 24/7 by any means, and you know, he's, yeah, he's all of those things. A coach, a football official, a all, all of that.

K:

He's by your side while you're telling this horrendous to, to most men, it would be a heartbreaking story to be there next to, and listening to, and certainly to my husband, who is also a very, you know, masculine man. Um, they don't like to relive it a lot of times, and so I'm just so impressed with him, and yet I can see a little bit of, you know, the tender, tender side of him when he's talking to you about these things.

He's a very gentle guy too, so. Yeah. So do, do you and he talk to people outside of your living room? Like I know you're, you're kind of in your little cloistered space when you're doing the podcast, but do you do speaking gigs together and does he travel with you when you speak?

H:

No, I usually speak on my own. Sometimes, we'll, I mean, we'll take any opportunity to speak together about our situation. That's not a, not that. We aren't willing to do that. It's just the most part when I'm speaking, it's generally on my own. Um, he can come with me, great. I actually have also gotten involved with Little Pink Houses of Hope, which is a organization that provides, vacations for women with breast cancer or people with breast cancer. Um, and when I go and I see the dads or the partners in these situations, I always think, oh, I wish he was here. And, and that's the goal too, is that he will at some point be able to kind of join me because I think the, you know, the partner support is, there's a whole nother, set of things you have to deal with there, right. It's, it is important to talk about.

K:

I wanted to ask you about your daughter as well. So you have a biological daughter, Sydney, and she is certainly, you know, at significant risk for breast cancer. And, um, I wanted to to have you tell a little bit of her story if you're willing to.

H:

I will say like. So Sydney has lived her almost her entire life with, with cancer, and we've, it's always been a part of who we are as a family. It's never been something that she's been, particularly scared about or, anything like that. It's, it's just been a part of our lives. she. and I, I should say too, I did, I have done genetic testing a couple of times.

I don't carry any markers for any, which is a little reassuring as a parent, I guess. Right. You hope that, you know, a, it's a fluke of how I have it, but it doesn't necessarily mean that she will get it. That being said, she's been in a high risk clinic since she was 18, which is they, they do have them, um. There. I don't know how many places have them, but we live in Michigan. She's been a part of the University of Michigan's clinic. and it provides a whole lot of reassurance for both of us, just that she has been getting these baseline, not just mammograms, but breast MRIs, you know, since, so for nine years now.

K:

How often does she get MRIs?

H:

I believe once a year. Uh, you know, she's a typical 20-year-old where she's moved to Chicago and come back. So, um, I don't know that they've all happened in that amount of time.

K:

Okay. So because you were diagnosed so young and because you had such a severe case of breast cancer, she qualifies for intensive screening, is that something they would've given her a choice to opt out of or were they really pushing her to do that intense of a, of a plan?

H:

Well, I think they started out, they did do ultrasounds. She's always, there's always been like, no, we need to look at that another time. So kind of along, I've had a situation like that too, where it's the lower level and go to what we need to be at.

K:

Okay. So she also has some, has some characteristics that make it murky a little bit. So she does, it is justified to do the MRI every year then. Okay, that makes sense.

I've just realized I've forgotten to ask you a really important part of your story with the Block Center. Um, personally, this last December, I had a scare and it was looking like I had a lymph node that was, it was highly suspicious and turned out to be nothing.

But I was already making a plan for if I had, you know, lymph node involvement. My plan, after looking at every possible scenario was to go to the block center. Um, I was very impressed with what they were doing. And I also really love my medical oncologist here in Oregon, but, uh, I had a plan to make it work and I wasn't quite sure of the financial implications of that.

So I wanted to ask you what were, and I know it's been 20 some years, but what were the financial implications for you?

H:

Yeah, I mean, I had pretty good insurance. My insurance covered almost everything. Um, there were some blood tests that we would do that are a little more, uh, things, you know, where we're looking at different levels of lycopene and different things like that we would pay for. And then my supplements, I, we also paid for, so like Vitamins that they, um,

K:

So not a lot of money. Not, not hundreds and hundreds or even thousands of dollars of investment. It was really insurance even 20 years ago, insurance paid for it. So all the more so now I would think.

That's really encouraging to me. Um, Dr. Block, not only. He, he not only kind of stresses the importance of doing lifestyle modification during your active treatment, but he also follows up after and does a lot of follow up work, which no one in the world that I'm aware of does.

Maybe somewhere in Europe they do, but I've never heard of a follow-up program to prevent recurrence the way that he offers his patients. Did you, I mean, obviously. Metastatic is very different than recurrence prevention, but did you have any, um, follow up long term like that, that you wanna talk about or describe that? Was it good for you?

H:

I just incorporated a lot of things from the beginning and I have kept with a lot of them. So, of course you kind of make tweaks along the way. Nutrition's changed a little bit, you know, but, um, some things have gotten easier. Some things are just the way we do them now. It's, you know, so, um, I, for me, it wasn't. When people would talk about, you know, kind of being done with my initial treatment and like, you can get back to life. And I was like, no, why would I go back to what led me to cancer. Like, I'm not going back. I, I'm creating from here.

K:

Yeah, it's tricky. It's so tricky. 'cause you know, we believe still that cancer starts with a carcinogen that comes from our environment. Something we can't help and that our weakness to cancer has something to do with our immune system, right. And levels of inflammation. But yeah, diet and lifestyle can really affect.

The levels of inflammation and our resilience in terms of turning off the epigenetic switches. Like if, if we're genetically prone, which I think anyone that's had cancer, we, there's probably some gene somewhere that we haven't discovered yet that we are weakened by the, the mutation for. But yeah, the lifestyle stuff is not, it's not a sure thing, but it, the likelihood is we're turning off those weaknesses by strengthening our lifestyle. It's peace of mind, right?

H:

It's "I am doing something. That's a huge component of this to me, and that's what led me even in the very beginning was, okay, I go for treatment once every three weeks. What am I doing? The other, you know, 18 days? Like need to be involved, to be feeling like I doing something to, you know, make myself stronger mentally, physically, all of those things.

K:

Oh, that's such a good point. I was gonna say in the beginning when you described your oncologist saying to drink some green tea and eat fruits and vegetables, I was assuming when she said that to you that she was a believer in the placebo effect. Go and do something positive for yourself, whether or not those things are really making a difference.

Because a lot of doctors are learning that psychology of cancer is such that you need to give someone a placebo. You need to give them. Something so that they feel empowered and it's, it's been shown in research that placebo works. You know, something that may not even be actually doing physical, biological good can do you good. Just because of the psychological nature of, and the power of it.

H:

Absolutely. And also not believing, like I was not somebody who was asking. I did get some statistics early on because they thought I'd be an earlier stage, and I remember as soon as I found out I was stage four, I was like, oh no, I was in those. Terrible statistics, you know?What turned things around for me with that was my brother, who's a doctor, who said, listen, nobody can determine what side of the statistics you'll end up on. Like, they're a probability. They are not a for sure. And that changed everything for me, you know, to be able to go, okay, even with this, there's nobody can decide. It was huge for me.

K:

Yeah. And I know that a lot of metastatic patients come to you desperately wanting to know the exact formula of supplements and foods, and I'm so glad that you hold that lightly, that you're not passing it to them with a stressed out kind of Yes. You need to do exactly this formula. No, it's not about that.

So, and, and that's why I was willing to have you on because I, I really actually protect the, um, the podcast from folks who are. Nutritionism, you know, kind of patients because I don't want any of that to be over-stressed, um, as much as I do believe in it.

H:

I, I will say that to people often, like, you can, I can tell you some changes to make but if you don't believe or want to, if it's only gonna add more stress, you know, like that's not the point of this. The point is to build good habits that actually have good effects, not add more to your plate, and every woman needs that.

K:

Yeah, and I think that's kind of my definition of nutritionism is nutritionism is taking nutrition and adding fear. You don't want fear in that recipe because the fear will outdo all of the good that the nutrition does. So because of that, I am able to very joyfully endorse your offering. You have a free offering to your listeners that's called The Five to Thrive Program or guides. Tell us a little bit about that.

H:

Yeah, so I've created multiple "Five to Thrive" Guides and they are just meant to help people kind of create a plan to live with cancer, and they're just. little tips and tools based on mindset, fitness, nutrition, medical, and social components, kind of the areas that we really realized that I focused on the most and still continue to focus on. My hope is just always to give people hope and some tools that they can then build a plan that works for them. Right. The goal is always to live with cancer and, um, there's no one way to do it. I know that, but I firmly believe that helping people find some areas to focus on. It's kind of like, here's the green tea that my doctor gave me--areas that you can really impact, um, how you're living, um, in a, you know, big and small ways.

K:

Yeah. And I'm so glad that you, unlike other influencers, you're not outlawing meat or outlawing dairy, you know, you're saying, you know, it's, it's a real gray area. It's, you know, those things. And that's totally my philosophy too, is those things can be good or they can be really, really dirty depending on where you're getting them. Thank you for being clear about that. That's so important. So how do people find your, your website?

H:

Yeah, I'm, my website is heatherjose.com and, um, my products are on there. My eBooks are there. Um, and you can also find the podcast is called, "I'm Still Here... Life with Metastatic Breast Cancer."

K:

So you do like a weekly episode?

H:

We were doing two a week, and then I was like, this is crazy.

K:

Yeah. That is crazy. I agree. Okay. And Heather Jose is spelled the traditional way of Heather, and then Jose is like Jose, uh, JOSE. All right. And I will link to those resources below. Heather, I'm so grateful for your generosity with our community, just your openness and the time that you have spent to share your story week after week, and your husband too, and you know your whole family.

I'm so grateful for that. It is such a bright and promising and hopeful story that I want everyone to hear, so thank you for coming and sharing it here.

H:

Thank you. I, I really appreciate, um, having the opportunity and I would love to, if you want to at some point come and join on our podcast as well and we can talk a little bit more about Nutritionism.

K:

Oh, awesome. I would love to. That would be great.

H:

Yeah, people often, they do want a guideline, but I want a guideline that that is, based in truth,

K:

It's tricky. It's real tricky cause we're continually learning always. We're always learning and perfecting in nutrition, so...

H:

Yes.

K:

So good to get to know you. Thank you.

H:

Thank you.

Today I'm reflecting on the science related to last week's episode talking to Christina Miner about her Capsular Contracture and Breast Implant Rupture. Lot's of good resources linked below about this....

Links:

Another great podcast episode on the history of implant mis-regulation is here.

The checklist I mentioned is here: https://www.center4research.org/wp-content/uploads/2019/07/Black-Box-and-Checklist-Consent-Form-PDF.pdf

A report on Breast Implant Illness is here: https://www.center4research.org/wp-content/uploads/2021/01/Breast-Implant-Illnesses-Whats-the-Evidence.pdf

The website I mentioned for implant-associated lymphoma is here: https://justcallmeray.org/

And a short interview about Squamous Cell Cancer and implants: https://podcasts.apple.com/us/podcast/breastcancer-org-podcast/id781242172?i=1000584263441

A great advocacy group that will help you to advocate for better research: https://ourbodiesourselves.org/

Transcript:

Today's another solo episode where I'm reflecting on my last guest conversation with Christina Miner. We talked about capsular contracture in the last episode, and I just want to reflect a little bit more on the meaning of this, the implications of this, the frequency of this, and a little bit about some of the risk factors.

I realize that this is a very controversial and touchy issue. And by talking about these things, I want to remind listeners that I'm not taking a side. I don't have an opinion on whether breast implants are good or bad. I feel like it's still very gray, and it's a very personal decision, very much having to do with your tolerance for risk.

I feel like I made an intentional choice to invite my first guest on, Michaela Raes, to talk about her positive experience with implants because I do feel like I am skewed in that most of my friends in the breast cancer community are flatties and a lot of those friends have explanted it because they have become sick as a result of their breast implants.

But I don't want this podcast to be singularly about the flattie perspective and rah rah flatties. I really want it to be helpful for everyone in the breast cancer community. And I'm doing this episode in particular, not just for the brand new patient that has to decide about whether or not to get implants.

I'm doing this episode to talk about ongoing risks for my friends out there who already have implants. You need to be vigilant. You need to watch those implants over the years. And certainly you need to get them replaced when they're wearing down and breaking down in your body.

It's still the case that most of the people who get breast implants are not breast cancer survivors. About two thirds to three quarters of the folks who get breast implants are just getting augmentation. They are not cancer survivors. And so these things that I'm talking about today, whether it be capsular contracture or breast implant illness or cancer, So I'm going to read the definition from the National Center for Health Research about what capsular contracture is.

Their definition says it's one of the most common complications of breast implants. In fact, it's over 50 percent of the population of those who get breast implants that have some amount of capsular contracture. Capsular contracture is when the scar tissue capsule that forms around the implant hardens.

So it's natural for an implant to have scar tissue around it, but it's not natural or intended for that scar tissue to harden. And in some cases, the hardening of that tissue can be quite painful. And it can distort the shape of the breast, and it can make mammography more painful and less accurate.

Removing the implant and the capsule without replacing the implant is the only recommended way to guarantee that this problem is corrected. According to the National Center for Health Research. Which is a National non profit think tank and lobbying group that tries to help the FDA be more responsible in its use of or approval of medical devices in general.

It's kind of the main aim of that organization.

Now with capsular contracture, you don't always have a problem for the patient. If it's just slight hardening, it may not be something the patient ever notices or is bothered by. Uh, but I, when I go to breast cancer walks and I table for Stand Tall, AFC, to talk to folks about flat closure. A lot of times I will have women walk up to me and talk to me about how unhappy she is with her implants.

And the most common complaint is that they're rock hard. And why didn't they tell me these things were going to be rock hard? I don't like hugging people anymore. I don't like holding my children because I've got these rocks in between me and my children. What they're describing is, I now know is capsular contracture, but because we don't go back to our plastic surgeons and have ongoing conversations with them about how our breasts are feeling and how we're experiencing our breasts, we don't get told that.

And so, you know, you can go on and on and even be in a breast cancer support group and have three or four of the other women in that group say, Oh yeah, mine are really hard too. I guess that's just the way it goes. So when I'm tabling now and I hear that story, I tell women to please go back

to their plastic surgeons and ask for them to advocate for the insurance company to pay for removal of their implants and to get a Goldilocks procedure instead. You can still have a small breast with just the skin that's around your implant. with a Goldilocks procedure and most plastic surgeons are very happy to do that.

Very, very cognizant of the discomfort of capsular contracture and the fact that it's not an intended outcome. It's not something that they want for you.

So with Christina, she had an extreme case of a capsular contracture. Not only did she have lots of hardening, lots of contortion, but that thing was being eaten by her body. It was also an immune reaction. She was having multiple responses to the implant, and she experienced rupture, which is another side effect and possible risk factor in getting implants that we just don't hear about.

Even folks that are given implants, they don't get to read about or talk about the likelihood that they would have a rupture or a leak. And so I want to read the description from the National Center for Health Research about rupture and leak. When a saline implant ruptures, it usually deflates quickly.

But when a silicone gel implant ruptures, you may not notice any changes. And the rupture may not be detected by a doctor or a mammogram or an MRI or ultrasound. And MRI is recommended for silicone implants every 3 years for everyone following surgery. And every 2 years after that to check for a silent rupture.

So it's likely that after 3 or 5 years that your breast implant will rupture. And you may not know it if you have a silicone implant. These MRIs that are recommended for follow up are not usually covered by health insurance, and this is something that people really should have been told really early on.

Um, they are highly recommended to, um, just make sure that your implants are still intact and still the same shape that they should be, but they may not be paid for by your health insurance, which is a really big bummer. And silicone might migrate in to the nearby tissues such as the chest wall, lymph nodes, upper abdominal wall, and into organs such as the liver or lungs where it can't be removed.

And since migrated silicone can cause health problems, it's currently recommended that any ruptured silicone implant should be removed immediately after the rupture. And treatment of these conditions might be at your own expense, not covered by insurance, or the manufacturer's warranty, unfortunately. And when I talk to friends in the breast cancer community that have had their implants, for more than 10 years already. A lot of times they have a really nonchalant attitude about that. Oh, I'm sure it'll last 20 years. I heard somebody say that their aunt's lasted 20 years.

Maybe mine will too. I really discourage them from letting it go that long because the likelihood is that It will break down in your body and you will have some health effects from it.

So another risk of breast implantation is something that we talked about in episode 13 with my friend Anna. She had something called breast implant illness. And this is something that's really hard to quantify or even explain in an objective way since the medical community has still not come together around a definition of it.

It is. very well acknowledged by most medical professionals now as a true condition. So that's good. That's progress over about 10 to 20 years ago when it was kind of denied in the medical community. And the FDA has started to study it, which is great. They started tracking in 2008. the number of complaints that they had about breast implants and the number of complaints that they had specifically with the types of symptoms that come with breast implant illness and they found about a little over 10, 000 reports between the years of 2008 and presently, 2024, that qualify with the the relevant symptoms, which are fatigue and pain, usually mostly joint pain, skin conditions, migraines.

memory loss, and brain fog. Several studies of women with breast implants have shown that they're significantly more likely to be diagnosed with one or more of the following diseases compared to other women. All of these diseases are autoimmune diseases, so they are chronic fatigue syndrome, multiple sclerosis, Sjogren's Syndrome, which my guest in episode 15 had as a result of a drug, um, coincidentally, and systemic sclerosis or scleroderma. There are so many different accounts of how many women get breast implant illness every year and unfortunately there's not a lot of studies on it so there's not a lot of objective data.

I can't really tell you how many women are actually struggling with this. Mostly because, like my friend Anna who was in episode 13, they don't know that they're struggling with something related to breast implants so they can't go to the FDA and complain about their implants. So So many women have lingering symptoms for decades without running into anyone that knows that this set of symptoms actually is a result of your breast implant.

So we need lots more awareness, lots more education. That's why I'm talking about this issue again on this episode. Just to get it out there so that we can talk about it in our breast cancer support groups and in our breast cancer communities.

But the legitimacy of this condition is proven by the fact that removal of the implants resolves the symptoms in so many cases. The FDA said that in seven out of eight cases,

there was a relief of symptoms in the folks that did get get their implants removed. So this shows that it is a legitimate medical issue that does need to be formally acknowledged by the medical community and defined well and taught about when we're giving out breast implants, right? There's another really scary side effect of breast implants that I will not focus on in this episode because I do want to have a guest on to talk about it who has more experience than I do.

But there is a type of cancer that is believed to be associated with breast implants. And originally it was thought to be associated with the textured types of implants only, but it is still kind of being sorted out whether or not it's just that type of implant. And it is called “breast implant associated anaplastic large cell lymphoma.”

And to a smaller degree, there's another type of cancer that is thought to be associated with breast implants called “squamous cell carcinoma.” And I hope to have Raylene Hollrah on as a guest to talk about this. She is the loudest advocate out there. She was, I think, the 30th person in the U. S. to be diagnosed associated anaplastic large cell lymphoma diagnosis after implantation. She has a website called Just Call Me Ray, and it's ray, spelled R A Y, dot org, and that's where she tells her story of having been diagnosed with a second cancer because of her implants. Uh, like I said, I'll hope to have her on to talk about that sometime.

And I won't go into all of the details about this cancer risk, but it is, uh, thought to be a risk of 1 in 4, 000 patients, so very, very low risk. But, um, still being ironed out which types of implants are possibly going to cause this type of cancer and at this point, I just want to say again that it is my belief that most of the women who get breast implants are very happy with them. They don't call their breasts rock hard. They are very pleased with the outcome and they don't get any sort of disease or autoimmune disorder as a result of their breast implant.

But because these risks and possible side effects do add up to a lot of concern and worry, I think for those of us who are part of our community who have implants or who are going to pursue them, we just want to make sure you have the whole picture. That you know how to watch and monitor and what to look for.

When I went to get my tattoo on my chest after mastectomy and a delightful woman who did my tattoo art, uh, told me the story of how she had almost no breasts, kind of like I do now. And, um, she is really, really happy with her new breasts.

And she wears clothing that accentuates them and really celebrates them and in her relationship with her husband. And she couldn't be more thrilled with them. So I think for people like her and me who have had both of the experiences of Almost no breasts and large breasts. Um, it's easy to know kind of where you stand and what you feel, as a result

of that body type, but you never really know what you're missing if you haven't experienced it. And that's part of the difficulty of making the decision to get breast implants. I think, especially after breast cancer, you don't know what being flat is going to be like ahead of time until you experience it and look in the mirror afterward. So I understand why it's really hard. And it's, it's hard to be rushed into that decision as well.

I think for patients like Christina, last week's guest, it's really easy to know what's right. You know, if your breast is, you know, implant is exploding outside of your, your body and it's like, Telling you that it wants out right away. You know, it's, it's easy to get that explant and to go on to be flat, but I think for people like Anna who had to live for a dozen years with these mysterious symptoms that she had no idea were connected to her breast implant, then it's a little bit more of a sad story to look back on and to tell.

So if you'd like to read more about all of these phenomena, the rupturing, the possible cancers, the breast implant illness and capsular contracture, the website I would send you to is the one for the National Center for Health Research. Their website is www.centerforresearch.org, and it's right on the front of their page.

Um. the information about breast implants and risks. And you can go and look for their black box warning document and their checklist document. And I would recommend printing it out. So you have it handy. I had a good friend just diagnosed with breast cancer a couple of months ago, and I was able to be strong and objective and holding this in my hand while talking to her, knowing that I'm not using my bias as a guide, but Just listing out the facts for her because, unfortunately, I know that her surgeon probably doesn't have time to do that.

So, I would highly recommend going and printing out the checklist for friends of yours who are going through the decision making process or friends of yours who are suspecting that they might have a problem with their current implant. Unfortunately, the FDA is pretty slow to correct any of this.

industry sloppiness. And we don't know exactly which kind of implants cause which kind of problems. The industry has not been pushed to do enough good research on the effects of their products, unfortunately. And so we also need to really push Our Congress people to push for the FDA to regulate this stuff better so that we can feel more confident recommending that our friends do get implants when they feel the need to without being nervous about them.

And so I think that's a really important thing for those of us who are comfortable talking to Congress. People or writing to them or sending them an email. I think that would be a good use of our time around this issue as well.

The bottom line is I think some of us just have bodies that respond more strongly to foreign objects. So it's good to know these things and have conversations. Know where to point people for the resources. Be sure to let me know what you think of this. I have a new Substack newsletter that's really interactive and I have a number of threads for discussion on it So I'm excited to see your your ideas and input on this.

If you subscribe to my Substack you'll get the email updates for it, and it's just Uh, abreastcancerdiary. substack. com if you want to join. And that would be the place to respond to these kinds of kind of touchy discussions.

Next week, I will have a very personal interview with a dear friend of mine here living locally, um, to me. I've decided to do a couple of interviews with friends that I see often in my own breast cancer community who are pretty newly diagnosed and still really struggling with their diagnosis and outcomes. One is still struggling with an early cancer diagnosis, early breast cancer diagnosis, and the other one is dealing with a second cancer diagnosis.

I feel like I've kind of erred on the side of telling stories of victory and encouragement and coming out of the struggle with a great perspective. But my next couple of interviews are going to be a little bit more personal and raw and kind of from, uh, the midst of the struggle, I guess, and things not being resolved yet.

So I'm happy that I can tell their stories too because these are really important stories and maybe even more meaningful for those who are really struggling and coming out of the midst of change and body resolution. And hopefully you'll relate to them. If not, feel free not to listen to them. If they're a little bit too triggering for you, they won't be for everyone, but I look forward to having these very special guests that are friends of mine from my local community.

And I'll talk to you then.

This episode's guest is Christina Miner, host of Our Scars Speak Podcast. Today Christina shares about her experience with capsular contracture and her openness in sharing her scars publicly. 

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Resources from this Episode:

Christina's interview with Women's Health is here

Transcript:

 Today's guest is Christina Miner from Our Scars Speak. Christina is a fellow flat advocate who's also in my Mastermind with my former guest, April Stears of Wildfire Magazine we're co advocates in the breast ca cancer space in many different areas, both podcasters, so we learn from each other sometimes on a monthly basis with April and some other breast cancer entrepreneurs in our mastermind. And I've been learning more about Christina, listening to her podcast, have so much in common with her, and I'm thrilled to have her today. Welcome Christina.

C:

Thank you for having me. I'm so excited. And it's so funny when you came to me and asked me, would I be a part of this? I was like, ABSOLUTELY! Cause unbeknownst to you. I had followed you and your story about DC is and things of that nature and how things that you found out and you didn't know. And I was like, wow, and it was just so powerful and enlightening to hear you share your story on. I think it was YouTube that I found you!

K:

Oh, really? I didn't know that.

C:

It's been a while ago, but I was like, oh, and I used to always think about you and just like, I hope she's okay.

K:

Aww. Thank you.

Yeah, when you share the raw stuff on YouTube, you kind of leave people hanging, and then YouTube doesn't show them the follow up video that says, I'm doing great. So it's kind of frustrating sometimes, but. Thank you for following me. I had no idea. So you live in Prince George, Virginia, on the other side of the country from me, and you are a counselor and working towards doing a master's in counseling and becoming a clinical therapist.

And up until now, you've been also, you've been doing life transition coaching with individuals as well. Is that mostly online?

C:

Mostly I do have some clients that have been around town that really have gone through, you know, like newly diagnosed with breast cancer. So yeah, or either they're starting a new business and mental health. So I do consultations and coaching and I call it transitional coaching because it's usually at a transition of life. And a lot of people are like, let's just get to the raw meat of what's happening. But I'm like, okay, we're going to get to that and we're going to do that. But how's it affecting all aspects of your life? Not just this one term, like how's it affecting going to potentially affect your health, your family, you know, your social life. So I try to make for sure their wellness is also encapsulated with just with the problem or the newness of a new venture that they're having. So, yes, I do transitional coaching and I do qualified mental health. I'm a qualified mental health professional, which is someone who goes in the home to do case management sometimes with various clients in Virginia.

Okay. So you work for the state right now. Or you did.

C:

Usually it's private organizations.

K:

Okay, cool. Okay. And what are you hoping to do once you have your master's? Are you going to branch into anything new?

C:

Yes. Well, not really new—I've done it before. It's just, I wasn't licensed at the time. Before breast cancer, I also was a partner in a mental health agency, a community based program. after breast cancer, I kind of, you know how it can be kind of stressful and you just like, you didn't, I didn't want to manage anyone.

I just wanted to relax for a little bit. So that's when I said, you know what, during this time, I'm just going to see which direction I want to go. And I was like, I talked to my partner and I was like, maybe I'll. Go ahead and just get a license in counseling and become a therapist. And so that's how I went in that direction, all for the hopes of one day having a wellness center where I want to be able to just like, not just therapy. Everybody doesn't want therapy all the time. So there's a lot of holistic things that people love to embrace when they're going through life period. Not just necessarily something that has happened to them, but. As you know, because I know you really, you know, you love various holistic things, yoga, you know, um, Pilates, uh, mindfulness meditation. So I want to have a wellness program, but I will probably just start out with the outpatient therapy, um, center first and then start incorporating all the other holistic aspects to it.

K:

Wow. I have had a similar dream, actually. When I first met my friend and mentor, Marlena Murphy, who passed this last year from stage four breast cancer. She was so inspiring to me because she worked in a place like that, like what you're describing, and I'd never heard of it before. It was a breast cancer patient-centric clinic that served folks not only in mental health, but also in massage therapy, physical therapy, nutrition, which is my thing. And I was like, Oh my gosh, that is such a great business model. So I'll have to talk to you more about that, that center that she worked in and it's in Georgia. So it's not super close to either one of us, but maybe we can meet there someday and do a little tour.

C:

Because honestly, when I was in one of my classes for career counseling, I came up with another idea to add to it. We had to think of this model of what, what would you do if you, you know, it had to be something different. So I'm not going to do a wellness center. Let me add something else. And something that stuck out to me and reminded me when you were speaking a lot of times when we are getting, you know, acclimated with life after or during our treatment or after our treatments. people change professions, and sometimes people want to change professions or go back to their profession and they just cannot their acclimation to society. Everything is just different because we've gone through this traumatic experience. And so I've seen where there's an absolute need to help people into what they want to do now, because now their perspective may have changed. You may want to do a whole different course far as career.

K:

Yeah. I relate to that. I can never go back to the me that I was before breast cancer as much as other people do and they have no problem doing that. I just can't somehow. So, well, let's talk a little bit about your experience, with your, your diagnosis and treatment. You had like me, your main diagnosis was DCIS, which is a pre cancer and the ductal areas is kind of what they're thinking. And, um, you had an expander placed because you had decided to get a double mastectomy and implants. Tell me the story of how that expander changed your life. What was that like?

C:

Wow! So with with the DCIS, you know, of course, I chose a double mastectomy and For various reasons. I just I was trying to avoid all Treatment for as radiation not to say that I never would do anything like that But it was just up for me and what I knew I was facing. I was trying to avoid all that meanwhile I was like well, I don't know, maybe I could get a little bit of my life back so maybe I'll do reconstruction.

Flat was given to me as an option. I must say by my doctor as one of the first options, she was like, you can go flat or you could, and then she started riddling off everything else. And I was like, okay. And I had never really heard a flat, you know, like aesthetic flat closure or just that period as being an option. I was just blown away that because a lot of people don't get that from their doctors.

So she asked me about, um, you know, I could get expanders and then I could get… What was it? The gummy, I think was the gummy implants afterwards, um, after my skin expanded back out. So I was like, okay. So I asked her about the material of the expanders and she was like, it's the same material as the implant, except for I'm going to inject saline in it for your, um, when you come in here every so often. to expand it to the size that you want. And I was like, okay. So did that. But soon right after surgery, I was just sick, constantly. I had a temperature of 103 for the first three days after surgery. Um, didn't know why, but it went away. But then I had a low grade of 99. 9 all the way up until I got the expanders taken out. Um, I had a rash. Every time I ate, as soon as I put it in my mouth, it came right back out. Um, but I didn't have stomach cramps, but it was just like, as soon as I ate, it just came out and then I had headaches. I started having headaches. I started being fatigued. I started having sweats. my joints were aching and then I would try to walk and it was like, to get up, I was like having difficulty. Um, as if I had like arthritis riddled body completely, it was just a lot of different symptoms that I had at one time.

So I was, my first thought after probably about a week of having, um, after the surgery, I'm like, “what is trying to kill me?” Because. It just, it got worse and worse every day. So on top of that, I started noticing that the side where the cancer was, the expander was looking like it was pushing out. It was like growing. And I was like, okay, I haven't had a fill this week. It shouldn't do this. But as you know, during, after my surgery, COVID hit, so I couldn't go to the doctor anymore. I had to stop, but I was fine with it because I was at the point where I didn't want any more fills anyway. And every time that I was going, when I was telling her how bad. I was hurting and how sick I was. And she was asking, questioning me about the temperature. She was like, you know, I said, well, maybe then I, I was just feeling terrible. Like everything you can imagine. She's like, “are you coming down with something?” And she was thinking COVID. I was “no, not that I know of I've been home.” So I had all those issues. Now I couldn't see her and now all of a sudden this left side is starting to contort, starting to turn black. it looked like I had cigarette burns on my skin. It looked like the expander was coming out my chest when I was turning. I could hear the slushing of the saline in my chest. It was an absolute nightmare and then it started happening on the right side. But not as prominent, but it was happening. So I'm telling her all these different things and she's like, okay, maybe you have an infection. She's trying to look at me on camera. She couldn't really see some of the things I was talking about. And sometimes the camera would fail. It was just a mess.

So finally when I went in to see her, she was like, cause she couldn't at that point, she really couldn't see everything. Cause it hadn't, it wasn't as bad, but the day of surgery, I was like, well, can we just go ahead and do the surgery? So the day of surgery, looked at me. Well, I'll take that back. We had another appointment in between surgery and the day of surgery. And she said, “Oh my goodness, you must have breast implant illness. I think you may have breast implant illness.” And I said, what is that? And so she was telling me how like the body can reject the material of the implants. Um, I said, of course I Googled and I was like, “oh, you think I'm losing my mind?” Cause a lot of doctors associated with, um, some, a mental disorder, you know, like, oh, that it's just, it's in their mind. And she was like, “no, I believe my patients. She said, you got about every symptom here.” Um. So she said, well, let's see how you do with, you know, the implants. the day of surgery, she said, but I don't know if you're going to do that well, because if you're having this reaction, she said, but maybe I could, she said there was different types and stuff. And I was like, okay, I said, well, I don't know if I want to do that. She said, well, we don't have to. She said, but I'm thinking that might be it. She said, but I don't know for sure. So that's kind of how she worded it. So the day of surgery though, at this point, Everything was twisted. Everything was about to pop out my chest. And she looked at me and she's like, you have capsular contracture. it's the highest one, the highest level, so what do you want me to do? Do you want me to do an implant or do you want me not? I said, look, at this point I'm trusting God in you. And that's all I know to trust because I'm going to be sleep. I said, and I've never gone through this before, so I don't know that you possibly could do while you're in there. I tell it, she said, well, you're kind of leaving this kind of vague. I said, okay, then if you think that I'm damaged severely, do not put nothing in me.
Leave me flat and that's it. So I woke up, she tapped me on the shoulder. She said, you're flat. She said, and I will never put an implant in your body. She said, because you were damaged that bad I had lost a layer of skin. So when she went in for the depth perception, the implant was busted and it popped open, going all over her assistant and everything. And she said, I was one of the worst cases she had seen with the hapser contractor and the breast implant illness. So after that, I came home like that same day, I felt so much better.

And then when I came to my first appointment, she's like, you look night and day and my temperature dropped. So that’s what the expanders did for me. So I didn't make it to the end point.

K:

Wow. That is an extreme case. That is definitely the most extreme case of a bad response to, well, it's not even an implant. It's just the pre implant that I've ever heard. Did you have a known autoimmune disorder before that or anything you are aware of?

C:

Not to my knowledge, I do not. Now, is it to say, that I do and I just don't know because,
diseases. It takes them forever to figure it out. Um, but not to my knowledge. I've never been diagnosed with like sick a cell or lupus or anything far as that. So, said, she said, you know, you may have an underlying autoimmune disorder. She said, it may just be that your body just does not like the material. was thinking, I had other things, you know, like I've had knee surgery. I've had, you know, um, root canals, you know, just thinking of things that I may have placed in my body before and I've never had it. That was the worst had ever experienced in my life. It was worse than the actual cancer.

K:

So you had how long to get ready for the possibility that you might wake up flat? How long did you have to process that?

C:

Um, that day, like right before I went into surgery, because, because of everything that was going on with COVID, it wasn't like I had this great workup, prior to, because the doctor's office was closed. You're on a camera that, you know, they didn't really use that prior to, so they're trying to figure it out.
I'm trying to figure it out from my end. So the video wasn't always quality. Um, and then, yeah, I couldn't go into the doctor's office till like, I think, like I said, I've had, I had those two appointments.
The one in between the surgery and the one prior to that, but that, that was it.

Basically right before surgery, she came in and taught me for an hour. She just sat there with me. I was her first case after COVID. So, well, you know, once they opened the doors for us to get surgery and I, she was trying to get me in prior because I kept on telling her, like, it's going to fall out. It's going to fall out. She’s like I cannot get you in. And I was like, but why? I was like, this is like an emergency. She said that she had even taken the initiative to call the insurance companies and call, you know, talk to the hospital and they all said it was cosmetic. And I'm like, excuse me, like, I didn't just wake up one day and say, I want to alter my body and I want implants today. It was because of cancer, why I went this route. So how is that deemed? I said, I get why they say cosmetic because it's an implant, but I don't understand why it wasn't—it was nothing that I elected to do because of just wanting to. I because of something that happened to me out of my control.

K:

I imagine that's probably just that there was no category to put it in. And so it had to fall into that next closest category, which is not okay. Yeah. That's, that's frustrating.

C:

Because even if it was elective, if somebody's telling you this is falling out my chest. I did have a friend, her implant fell out in her shower during COVID they got her in, but it's like, why does it have to get to that point? Because now it's a risk of infection really bad because I'm at home. So, yeah, but. Yeah, that day of surgery, she sat with me for an hour and, um, I remember it was her first surgery and coming back from COVID and they got their vaccine. No, tested that morning for COVID vaccine had come out, but they had got tested that morning for COVID, which was like the first test, I guess, that they had had.

So they were all talking, you know, it was just, a whirlwind of events, but she sat there with me for an hour. And went over to various things and she said, well, if you do go black, then what we'll do, we could later talk about other, you know, um, if you want to do other revisions or anything of that nature, but I just, I was tired at that point after I woke up had to realize I'm black. So, no, I just had maybe we talked about it for about 15 minutes and it really wasn't talking because. I had her kind of going in there blindly. Like “you figure it out because I don't know what you're about to go into and you're the professional.” She was like, that's not fair. I said, no, but I don't know.

I don't know. And this was so unexpected. And with COVID I couldn't come in and down and have, I said, you've already had a conversation with me about different routes I could go. I said, and this just, please use your best judgment.

K:

So, did you have a choice as to whether or not to leave some extra skin or to have a tight closure or did you talk about that?

C:

So because I put her in that kind of gray area what she did was primarily flat and she left a little bit of dog ears on the sid—not much, but she left some. She was like you can go back and we can do a revision. She said but I'm not putting an implant in you ever again in life She's like nothing even remotely close to an implant. Um, and she talked about you know, like fat grafting and different things like that. She did not do DIEP flap because she's like the surgery is like too long, she just doesn't do it, but she'll give me a referral. So she went over those options with me and she, she said her reasoning for leaving was because in case I woke up and she said, you know what, maybe I do want to try this, that, or the third.

She said, if you want to try an implant, feel free, you just gonna have to go to somebody else. But she did leave a little bit of skin back for that reason, but that was only because I left her in a very gray area with my decision and I understood why she said, now I can go and take that off. Said it would be another surgery. I hate to put you through it. She said, but because you left me kind of in this gray area, that’s what I did.

K:

And you didn't go back. How did you feel about being flat? Like, were you ready for that or was it really shocking and traumatic?

C:

I would say that—I don't know what, what has always spun out to me with this whole thing was just hearing the day that I got the diagnosis and hearing the word carcinoma. Um, ductal didn't matter in situ. I didn't care about any of that. It was just carcinoma. So, I used to work in the medical field and I used to work with this one doctor whose idea was if you got cancer, be as proactive as possible because it's a disease that's one of the worst, you know, like it, When it comes back, if it comes back, it can come back with the vengeance.

So his thing is do the best way, do whatever you can first to eradicate it versus kind of like taking a little bit and that was his. No offense to anyone out there who's against that, I'm not trying to say that's what you should do, but when he spoke with me, that always stuck in my head. So, that being said, when I woke up flat, I took it as the cancer's gone, to my knowledge, you know, and I don't feel bad.

Like, I was so sick from breast implant illness and the capsular contractor that even though, because even before that, I had already lost my breasts. My breasts would never be the same no matter how much plastic surgery they gave me, so I already felt there was that void there of not being who I once was, right?

So with that being said, when I became flat, it was almost like, so I had, you know, I went and get my, um, prosthetics and stuff and people were like, okay, you can wear your prosthetics. That'll help you make you feel better. And I said, you know what? No, I want to embrace who I am now and I'm flat and that's who I am. Now, do I have moments where I see people in bathing suits or certain dresses? And I'm like, “Ugh”. Yes. I do have those moments. I allow myself to be in those moments. But I don't dwell in those moments because to me, I'm alive. So because I'm alive, I'm going to talk about whatever I need to talk about to help other people. And it gave me almost like a sense of confidence that I never had to walk around flat. And I know sometimes people look at me weird, probably like, “she a boy, she a girl?”, or whatever the case may be. But I'm okay with that still because they don't know my story, but Hey, if you want to use it as a way to get to know me, we can talk about what happened to me.

And so I kind of, I use it now to the advantage of sharing with people about flat aesthetic, aesthetic, closure, and also about cancer in general, um, breast cancer. But yeah, at first it was, you know, it was like, okay, this is my new, this is my new me. A part of who I am now. She did what I asked her to do,
and I told her, I said, I'm trusting God and you.

And I, and I believe in that wholeheartedly that she did because she said, while she had me open, huh, I could do this to maybe counteract the reaction. But she said, Nope, I'm gonna leave her flat. And I'm glad she did because if I would have had to go back, I would have probably been upset. But, um, so no, so I'm, I'm grateful. I embrace my decision. When I woke up, I was like, “Oh, okay.” And that's exactly what I did. I was like, okay. And then when I felt so much better, I was like, woo. And then I did try to prosthetics a couple of times and I'm like, no, then I was like, I go back to work. Should I wear them? Or should I just be flat? You know, cause I could walk around with them one and nobody ever know nothing. And I was like: “no, I'm not, not me.” And it's not to say that I won't ever wear a prosthetic or ever get some type of reconstruction far as take, you know, going a little bit more aesthetic, um, flat closure. But the point that I'm trying to make is that I am allowing myself to accept me for me because there was a time, even with breasts, I was not very confident. I had very low self esteem and very low self worth because of things that had happened to me. as a child.

Then eventually I got out of that and I said that stuff is not going to define me, but I still had issues with image. Even when I was skinny and healthy and athletic and this, that, and the third, I still had issues with image. And I was like, I'm not going to allow that to put me in a place of depression for the rest of my life. I'm going to take control over this. And so that's what I did.

K:

I am so impressed with your surgeon being so educated on breast implant illness, being so responsive and saying right away that I'm not even going to put an implant in you. That is, that's something you don't hear about very often. A lot of times, like you said, when you look it up online, surgeons will blame the patient and say that it's the patient's problem and it's all in their head. So it's great to hear an antithesis to that narrative of “it's all in your head.” Um, I mean, obviously this was an extreme case. You couldn't really deny it. It was right there in her face, but still she was so respectful of you and responsive as she could be during COVID.

C:

Yeah, because I knew nothing about breast implant illness until she said something. I had never heard of it.

K:

Yeah. Yeah. And how, how would you, yeah, it's a pretty obscure thing unless you've been in the breast cancer community for a while and then you hear about it. Well, tell me the story of Our Scars Speak. I know there's a story behind the name of your podcast.

C:

There is a story. Um, so I, after, you know, breast cancer going flat, all those things, I ended up joining the first group I joined was, uh, Here for the Girls and it's an organization in Williamsburg. And I ended up being a co facilitator, very involved with them. And then also I had joined, um, Stand Tall Aesthetic Flat Closure. Well, when I had joined Actually, they found me first because they wanted me to post a photo of myself on their Instagram. So I was like, sure, I'll take it. It's fine. And, um, so then from there, it was Renee and Kim. Um, Renee and Kim came to me. Renee Ridgely? Okay. And then Kim Bowles, right?

Yep. Um, the one from Stand Tall, which is Renee, and then Kim is from “not putting on a shirt”. So they came to me like, “Hey, would you be interested in doing an article with women's health magazine?” Well, when they told me, I was like, sure. But then I thought, well, is it the real women's health magazine?

Or is it like, Some, some other magazine that I'd never heard of. the editor contacted me long story short. And, uh, I did this art, I did this spread of women's health mag. Well, it was in, it wasn't in the mag, the paper version, it was online. So they thought they were just going to put me like down below, like somewhere about the health, you know, like a health article, click on, they didn't real, my editor didn't realize they were going to feature it on the very front for like the whole issue. So they wanted to do a photo, you know, with me with my shirt on or not, you know, it was up to me. And I was like, I had prayed about it. I was like, Oh, should I, should I not? And then I was like, no, yes, people need to see this. Right. So I ended up, um, I said, I'm gonna do this. So they said, well, would you, we can find you a photographer around and I was like, no, I want to come to New York. I want the whole experience because I knew they had more, um, their photographers. They were probably a little bit more educated on what they wanted as far as what they were trying to capture the ones that they worked with. So they allowed me to come to New York.

And I remember the day of the photo shoot, I was standing in the mirror and I said, Oh my God. scars speak. So that stayed in my head all day long. And we did the photo shoot and I was like, wow, this is, this possibly could be a big thing for a lot of people to see who are going through or getting ready to make a decision of going flat or have to go flat. So I came back home, I was on the plane and I was writing out, I made a poem called my scars speak and it just went through my head. Like my scars speak, um, sadness, my scars speak pain, my scars…. It's just this long poem that I wrote about from the time that I found out I had breast cancer to the time that it was no longer in my body. And so many people were like, “Oh my God, I can relate to this. This is exactly how I felt.” But then from there, I was like, no, our scars speak. So that's how that title came about. And then I was like, okay, what am I to do at this? Once again, cause I'm a true believer. I prayed about it and I was like, what am I going to do?

And it's like that whole weekend I was getting downloads of just everything. Like this is who you need to have up there. And so it's breast cancer, survivors, thrivers, metavivers, previvers that I have to come on. It'll be their caregivers that can come on and, you know, there's a vetting process professionals that work within the breast cancer community, those who can educate us that are doctors, a tattoo artist. I've had various people attorneys. I just want them to share. Some of them have their own personal story so they can share their story. Or they can share how they got into the breast cancer community. Cause I want people to know how, you know, something about them and that they're just not out here trying to get money from people, but how did they get involved and what’s their why to being a part of this community? And so I have various people on to share their stories and I love it. I love it. I love it. I love doing it. It was going to be just the IG live and then it just spilled over into the podcast world. Um, so yeah, so that's how that all came about through that one article.

K:

Wow. So the women's health magazine article, what was the kind of the punchline of that or the headline of that? What, what was the interview like?

C:

I’m trying to remember the actual title name, but I know that it was all about being flat. Why I chose not to be, why I chose, and it states it in there about why I didn't choose reconstruction, and why I decided to go flat. So it's about my journey of the breast implant illness and the capsular contractor and the acceptance of being flat.

K:

Okay. So that was a really big. voice that you had to tell the world about breast implant illness. Did you feel like that was a powerful statement?

C:

Yeah, I felt it was because some people are like, oh, aren't you excited? I'm like it's my mission. So for me, when I have what I call assignments, I, I, I do them so I don't get too caught up and even, “Oh, this is huge.” Like, and maybe that's wrong with me because sometimes you do need to celebrate things, but I get caught up in, this is something that I've been placed here to do. I need to do it and I need to see it to the end. Um, and so that's how I took that assignment. Like, this is something that could really, really benefit other people. Not just me being out there showing my chest. Um, scars from that, the scars from having children, hysterectomy scars. Like it's not just. It wasn't just that for me.

It wasn't about, I didn't feel it was about me. Yes. It’s my story, but I felt my story was a vehicle to help other people who felt that they couldn't speak or who had a, you know, they're at a crossroads about making a decision. And I always say this, but it also spoke to the people who are no longer here, who can no longer speak. Who have transitioned into heaven or wherever they are, right? So those people still have a voice. So everything that I do is not just for me, it's for everybody. Cause I'm like, wow, who may not even have anyone in their family who have breast cancer may see that picture and go back and read the article. who knows? Maybe down the line? Somebody in their family have breast cancer and then who knows, maybe, you know, so I always look at the bigger picture and then this year had no clue. This happened in 2022. I had no clue they were going to repost it on their, um, on their Instagram. So the first time they posted, it was like a lot of likes and stuff, but not that many shares, but this time it was a ton of shares. So that even made me happier because it's like, okay, our voices are being spread even further now.

K:

Did you share it on your personal, like, actual in person relationship Facebook account? (Yes) Okay, okay. So let's talk about that because I also, um, have shared my bare chest publicly and I have not shared my bare chest, um, except maybe in a very different way. with like a hundred other women, um, on my, on my personal Facebook account with people I've known my whole life and having grown up in the church. My dad was a Baptist minister, um, very similar, I think, to your background in terms of like having a lot of personal contacts who are Christian and maybe even conservative Christian.

Um, how does that hit? Like, how do people respond to you and how do you grapple with some of the misunderstandings that may naturally happen when Christian women are getting up and showing their bare skin of their chest?

C:

So I, you know, when I said I had to pray about the whole article thing, that was part of it. Like, okay, am I, I was like, I have nothing to show really. It's just a flash, but I'm like, I know how people can perceive it. Like you're still being, you know, indecent. Right. So I, I have learned because I have ministered in prisons and everywhere. I learned early on, I was always kind of considered a little rebel in a way. Um but at the end of the day, I have to live with the decisions that I make. Meaning if I feel that it doesn't bring me peace, not just in my Christina, just being Christina, but like in my heart, what I call my spirit, if I feel like it doesn't bring me peace, then I'm not going to do it. If I feel like it brings me peace and I feel like. Okay. I prayed and I feel like God is really leading me to do this. I don't care what nobody says I'm doing it. Everything that I do. I mean, not everything, of course, but the majority of things that I do Always try to make sure that I really pray about it before I move on.

Is it a state that I get it all right? absolutely not because I get a lot of wrong, I really really try to be sensitive to that I walk in my faith with God and what he would call me to do not just what I want to do because me being who I am, I probably would I've done that. Would I've shown that I'm overweight?

Cause I always told God, he had a sense of humor. I was going to be a model years ago. He told me I was too short. They said I had all the other characteristics without skinny. I had long hair, blah, blah, blah. And I said, Oh, so you wait till I'm overweight and have no breasts. I am modeling everywhere. No, it's just like, it's just, to me it's like a sense of humor. So you know I’m like, okay, but I'm willing. So because of that, always remind myself. At one point I used to abuse substances and I used to abuse alcohol, right? So because I had gone through a lot of trauma in my childhood and the reason why I'm saying this is because of how I am now. I made a vow that Once I stopped everything I was doing I was functioning. But once I stopped that, once he allowed me, help me to get through that. I would always share what he wanted me to share because my story is not my own. So because of that, even if I feel like, you know what, they're going to judge me, they're going to have so much to say. They're going to say, I'm not walking by faith. They're going to say, I'm not a Christian. They're going to say I'm a heathen. I don't care. Can it hurt? Yes. But I can't care enough to stop because they're not my God.

K:

Yeah, that's powerful. That's a big conviction and I'm glad that you have that. Um, I feel like There's, in the breast cancer community, even folks with implants, you know, anyone that's been through breast cancer totally gets it. Your body is different. You should be able to express the difference that you've experienced.

And outside of breast cancer, I think a lot of my friends, even friends that are like clinical therapists, social workers, you know, they're a little boggled by it. They're curious. They're not judgmental. But then there are people, especially of the male gender, who just don't get it. Do you have, and you mentioned you have a partner, do you have a partner that defends you in this area and understands you?

C:

OH my gosh. So my husband and I have been married forever. We've been married 24 years and when I got diagnosed, you know how they have you to come in for your consultation. So it was my husband, my sister and my mom that I brought in and we were sitting there. And so my question was, what's survival? Well, they're going to tell you five years because that's survival for everybody, right?

That's just like a, they put everybody in one big room. Um, so she's going over all the statistics and stuff. So my husband asked a good question, recurrence. And. She said, well, if she does lumpectomy, radiation, if she does lumpectomy without radiation, like she gave me all these different choices and he said, well, what about if she had a mastectomy, you know, like a double one. She said, oh, it drops it to like 2%. He said, we'll go with that. I said, WAIT a minute! I was like, wait, it's my choice! He said yeah, but no, I want you here. With us. He was like, so, so yes, he's to answer your question. He's very supportive. It was, he would never admit this, but I feel, cause I know it was uncomfortable for me.

The very first time we were intimate after, you know, after all the healing and stuff, it was, it was strange for the first two times, first few times actually. And he would never admit that's the case, but you know, your partner, right. You know who you've been. And it was like, this is strange for you and me. And but you know, with time. And doing what my friend had asked, told me to do another breast cancer survivor. She's like, you know, just you and him explore your body again and everything. And when she said it, I’m like, that makes sense. So that did help, you know, but, um, but yeah, he's, he's very much supportive.

He's, uh, He was like, yeah. And I told him, I, I'm not one of your marines. I was like, you cannot answer for me So, um, I said, but it did, it did make me feel loved and supported genuinely that he spoke so quick and was like, no, take them.

K:

Yeah, it's nice to know that they're behind it. My husband was the same. He was trying to zip his lip really, really hard and not have an opinion and let me decide. But then when I said that I wanted the second one off also, he was like, Oh, I'm so glad that you said that because that's what I would like to, because yeah, of course they care more about our, our health and longevity than the way that we look.

That's great.

C:

So that was the extent of that. I just. I'm so grateful for the support of family and I always call it my village of people. Um, my family, my and the breast cancer community. Uh, we are a very, you know, unfortunately getting larger, but at the same time, I just think there's a unification within it. That is something I can't describe it. And a lot of us, I think we have a very difficult time describing it because, it's very hard to describe because we're just very linked together in a way that a lot of people do not understand. And it's one of those things that you would not understand it unless you went through it. And I don't want anyone to go through it, but I have to say I found a whole nother family within this community.

K:

That's wonderful. We just have a few minutes left, but if you have any advice for younger, uh, flat advocates or activists, um, coming up in, in the community or just folks dealing with capsular contracture or breast implant illness, do you have any advice that you would give them early on in their journey?

C:

I would say definitely continue to fight for what you know is happening within your body because only you really know. And a lot of people say, well, that “pain usually doesn't come with breast cancer” or “you're too young” or this or that, but no, you know, your body, I've, I fought for almost 20 years outside to say that I had cancer a whole 20 years, but I started having symptoms. So continue to voice your opinion, continue to, you know, if you don't know how to advocate for yourself, ask someone who's within this community to help you. That's what I did. I kept on asking friends that had gone through breast cancer and I hadn't even gotten diagnosed. I just knew the symptoms that I was have, I was having and experiencing. not normal. I began to learn from them and learn also how to advocate for myself. And if you don't know how, ask someone to come with you. If you go to an appointment and you may forget something, and this is big, whether you're in treatment or not in treatment. know, tell the doctor you want to record so that you don’t forget. I think that's a big, big one and make copies of all your records, not just digital, but print them out.

I'm saying all of this is because I see so many people who do not have these, they haven't done these things. And then they are like, I don't remember this. I don't remember that. And so sometimes writing stuff down, you'll forget to write it. Cause it's just so much information coming to you. So ask them, can you record or ask another person to come with you. Just remember that your voice definitely matters. opinion matters. how you want to treat your body matters. And no one should tell you any different than that. And you should fight for the right to ensure that you are being treated respectfully because you can always get a second, third, fourth, fifth opinion. Um, and use that if you need to. And when it comes to advocating, if you feel—some people don't feel like they want to share their story, they, they, they don't want to share their story and that's your right too. But if you feel like you want to share your story, don't be embarrassed because someone out there needs to hear it. Either they are going through it or getting ready to go through it. don't feel like, Oh, nobody's going to listen to me. Somebody will listen to you. Don't, I know sometimes people get caught up in numbers. Well, I didn't get that many likes or I didn't get this or that. Don't worry about that. Just share your story,
Share your story to help other people. So that's basically it for me.

K:

Thank you, Christina. It's been so great to hear a little bit more deeply about your story. Um, tell me about your handles on Instagram and, and anywhere else that you're at.

C:

Well, um, if you want to find me personally, you can look up Christina minor and that's M I N E R and Christina is C H R I S T I N A. I just always assume people know CH because people try to fit K, but, um, so you can find me at Christina minor, or you can find me at Our Scars Speak and that's on ig and it's both of them on IG um, Facebook.

And then when it comes to YouTube, you can find me at “our scars speak” and also podcasting at our scars speak. So very, very simple.

K:

Great. And then you're the article to the women's health magazine. Is that still linkable? Can I find that? Okay, cool. I'll put that in.

C:

Yeah, if you can, um, you can look it up and post it underneath, but for anyone who's listening, you can look up Christina Minor Flattie or Christina Minor Women's Health Magazine. It'll pop up.

K:

Okay, great. I'll put that on the website for the podcast. It's www. abreastcancerdiary. com.

C:

Absolutely. Thank you.

K:

Well, I'll see you there. I will talk to you soon in our mastermind, and until then, I hope that you stay well this winter.

Thank you so much.

My new friend and fellow podcaster, Tina Conrad, is this week's guest and I couldn't wait to hear how she did it. She maintained a high pressure job as a manager in a fast paced fashion corporation right through breast cancer treatment and recovery. She is truly a warrior woman and I'm so thrilled to tell her story here.

Transcript:

Kathleen:

My guest today is Tina Conrad. She's a senior planner at Carhartt, as well as the host of DJ Breast Cancer, another podcast. And she lives in Leesburg, Florida. Her breast cancer was stage 3A. It was ER-PR positive and HER-2 negative. She had both ductal and lobular breast cancer. And like me, she has a mom who has been a breast cancer survivor as well and has gone through that as a long-term survivor, both of them have had at least 11 years—in Tina's case and her mom even more years since any kind of recurrence. And I just wanted to talk to Tina today about what it's been like because I was telling her, I don't know anyone in my life in the breast cancer community here on the West Coast who's been strongly entrenched in the corporate business world and who stayed there throughout their breast cancer story. And she is someone who managed to do that. So I'm kind of in awe of her. I found Tina through the Wildfire Breast Cancer Writing Community and she's a fellow writer there. And I've heard her story mostly through her podcast and she was sweet to offer me a little bit of advice and a mentoring session when I was thinking about doing my podcast. So we know each other a little bit!

Welcome Tina. And please tell us about your journey and how breast cancer entered your life in that corporate business world. What was your role at that time and how did it affect you? How did you exit and reenter? What was that all like for you?

Tina Conrad

Yes. Well, first, let me say hello, Kathleen. It's so good, so good to be here. I've taken a little pause or or a long pause. It's been a few years since I've done any recording, but it's just so great to be back and be a guest and no one else I'd rather be a guest with. So thank you. So, back to, gosh, back to 2013 when I was diagnosed, um I was a DMM, which is Divisional Merchandise Manager at a large retail outlet. um It was truly like my dream job, like we're where I aspired to be, you know, and I had a whole team of people and I was just recently married, um and like life felt really, really awesome, you know like where I just planned to be. and then you know I just stopped one day and kind of took um notice of my health because someone actually on my team had had a health scare, not not breast cancer related, but just had a health scare. And I was like, you know, like this breast of mine, like the nipples sunken in, something doesn't look right. And, you know, I kind of ignored it like for a few months. I was very much an advocate for breast health. I had gotten a mammogram when I was 30, when I was 33 because of my mom, I was very you know into all of that, but she had always had like a lump. And so this was like totally you know something different.

And so having this health scare with someone on my team, I was like, you know, I'm just going to go get this checked out. And, um you know, it was a mammogram and then, you know, they call you back and, you know, you can just kind of sense and read the room that like things aren't really normal. They they weren't like the other times I'd had a mammogram. And so, um you know, that led to um like an ultrasound and then a biopsy. And I woke up from the biopsy and basically the doctor said, get your mom's records.

That was the first thing I remember her saying to me. And so it was just very foreboding. So like I knew um things things weren't going well. So ultimately, yes, I received the diagnosis that you know I had breast cancer and it was pretty advanced on stage 3A lymph node activity. um fifteen I had 15 lymph nodes taken out. um So you know I did opt to get the double mastectomy just with my mom's history. um And then ultimately I did find out too, you know I had lobular which can often jump you know to the other breast too. So I felt very good in my decision you know that I had made um given my you know my family history and everything that had happened. um you know But I was i was busy. like I worked a lot of hours. you know I tried to plan my chemo around like the least intrusive time for work. I was still just very, very career focused. And everything changed. you know like Everything changed. um you know i I had never even taken you know more than maybe one week's time off you know in a row you know in my whole career. So you know with this cancer diagnosis, you know um with with surgery, I took several weeks off. Then with chemo, you know you you get yourself worse and worse. you know like The more you go on, it it's just harder. It's harder on your body to recover.

And there was one night, like I woke up and it came following, ah you know, my my oncologist was really great, really talked to me just like a human being. And he said, you know, who's your advocate at work? And I was like, well, you know, my my boss, you know, she she looks out for me. She does. He's like, no, no, no, no. I'm not talking about your boss. I'm not talking about that. He's like, who is your advocate? And I was like, well, I don't have one. He's like, well, then I seriously need you to consider taking a leave of absence. And I think he was just so black and white in that moment that I needed. And um you know so that was kind of my first taking a step back from work you know and in focusing on myself and you know putting my health first because I had always put my career first. So like that just was who I was. I've definitely changed just in my attitude and viewpoint to work. I still have remained within the corporate world, but I'm no longer like leading big teams, um and I'm happy. And I just have a different viewpoint, I think, on life and you know what is my priorities. And that's okay and it's not to say if ah someone listening there you know keeps going down a path of career, that's great too. But I feel that you know um you do have to put your health for it first. And you're doing it not only for you, but the people that you love. And that just became a different priority through this whole process.

So I was working with Sears Holdings, which was like Kmart Sears, obviously they're no longer no longer in business at the time of my diagnosis. And it was about two years that I had worked there that I just really had a calling that like my my work had to mean more to me. And Vera Bradley had a foundation on that specialized and in breast cancer. And so that was really important to me. in And you know we had so many great opportunities. I saw the foundation like where they do the research. It was so fascinating, you know just all the trials that they were doing. um so So I was really embedded you know not only within Vera Bradley, but you know i I did a lot of volunteer work with the foundation. So I worked there for nearly nine years. And then I just you know recently felt a need and a calling to do, you know again, something different. And so I've been in either merchandising or inventory about half of my career each. And um you know now I have a ah position that allows me to be remote. I've recently moved. um And I get a little bit more in the details of like the work and inventory.

I don't want to sound too much like a nerd, but like I love Excel. I love it. So it's just it kind of gives me a little bit more different purpose. and I'm just really enjoying it. So it's it's just been good for me in terms of like a work-life balance and where I see you know myself and you know just trying to help out too. I have an aging mother-in-law and trying to help you know her more too. So hopefully this puts me in a position where like i can I can do more you know and be more with my family.

Kathleen Moss

At the time of your double mastectomy, how was it going back into the workplace with a new body or a changed body? How was your experience of that change in that corporate setting?

Tina Conrad

Yeah, I think it was less about, you know, like the breast side of it, it was more the hair, you know, like the hair is a big deal. So coming back, I took my leave, you know, after I'd had my mastectomy, I had been through um like 12 rounds of chemo and so my hair was just starting to come back and it was just like that peach fuzz you know real tiny you know hair and I remember going to a store to to work on some kind of project that we were doing and a customer came up to me and she was like I really love your hair and it was just like such a sweet moment that like you never know what a compliment can mean to you. But that in that moment, I know what a compliment meant to me. you know and And I could have gone into, like oh, I just had cancer, all this, all that. you know Oh, really, it looks crazy. you know But I was just like, I stopped. And I looked to her. And I was like, thank you so much. you know like And it just was really, I didn't have to be a cancer patient in that moment. you know I was just me with short, short you know growing here and it was you know just a beautiful thing. um but But it was, in general, it was a hard transition. you know like It's kind of like ah you know like your badge of honor. like you're You're so vulnerable coming back. um I've written about it within Wildfire too, because I definitely had um a boss when I came back to work at Sears. We had just come from some meeting and I'd only been back a few weeks and you know it was just her and I walking and she was like, um you know now that you're back on the saddle, I really need you to step it up. And it was some of the hardest, harshest words I've ever heard you know in my entire life, because I thought I was so prepared. you know And I really come back and done everything I could do you know to to retrain my brain, to like study these notes, you know, to be a student again and like, you know, cause you're, you're out for, I was out for three months, you know, with a leave. So it, you know, it's, it's difficult to get quote unquote back in the saddle again. It's, it's no easy feat. Um, so you know I just realized in that moment, I can't work for someone that can't acknowledge, you know, she had been kind to me like on other occasions, but like now that I'm coming back, you can't be kind.

So it just put things in much more black and white than like I had kind of experienced before in my life. so So I went to go work for someone who had had had like a history of cancer in their own family and could acknowledge you know me as a worker, but also me as a human being. And like, that was very important to me. um And I think it's, you know, no matter what people are going through um in their lives, you know, it it doesn't just have to be cancer. It can be any kind of health or mental or any kind of, you know, issue.

I think it's just important to you know to to be empathetic and to understand. you know You might not know all of the details, but I think we have to be kind and like allow people the space you know that they need to heal and to be understanding when people need time away from work. um you know that's just That definitely changed within me, you know within that experience, to then share it with other people and to always you know, give people more the benefit of the doubt, you know, because work will always be there, you know, but um the the relationships and the kindness and the way you make people feel, um it's just very important. um and and And something that will always, you know, go beyond you, you know, even your time on this earth is like how how you make people feel.

Kathleen Moss

You mentioned needing an advocate ah when you were first diagnosed and it sounds like you did find that in your second job after diagnosis. What did that look like? where Where did that advocacy come from and how was that powerful in your life?

Tina Conrad

Yeah, I love I love sharing and like helping other women you know through through difficult situations. um I saw that within my mom. She's not so much on the global scale, but you know she would take a woman aside and say, like oh, you're not sure what a double mastectomy looks like. I'll show you. you know And she'd take them to the bathroom and show. you know And she was just very kind you know to people who needed maybe you know just a kind word or or a moment. And so I think giving back was always very important to me. um And I feel like, you know, there's so many things we can do boots on the ground to help women, but also research is so important. So first and foremost, I always wanna know, you know like we're just coming off of October when we're recording this, but where's the money going to that helps women? Not just only for the short term. um Women do need help, like obviously to within a diagnosis, but what can we do to help the next generation not experience what we did, whether it be through vaccines, whether it be through new trials, metastatic breast cancer, there's clearly so many things that we need to help others with. And so that's very important to me. And so it's, it was not enough for me to just, you know, walk away from the community, I felt like I needed a way to give back. And so, um you know, whether it was speaking at various events, whether it was starting up a podcast, um it was just, you know, very important for me to, to help other women and then to, you know, to support them through whatever they're going through.

Kathleen Moss

Well, thank you for doing that. It definitely impacted me in a good way.

Tina Conrad

Oh, good. Thank you.

Kathleen Moss

How was your mom's openness about her mastectomy and the way her body looked after mastectomy? How did that inform your experience going into mastectomy?

Tina Conrad

I think it was very important. You know, she was very transparent with me. You know, clearly she believed because she she she was told by a doctor, you know, oh, just get the lumpectomy. You're young, you know, this will all be fine. um And then they came back, you know, almost in the same location three years later. So For us, it was very important you know that she shared that experience. She wanted the best for me. She wanted to do the most. you know That would give me the most longevity of life. and so you know she was very much an advocate for me to do as much as possible, obviously, too to be um as vigilant you know to to that. And the way that I think my dad loved her through it is I also feel like the way my husband loved me through it, you know which is to make a woman just feel beautiful in the body that they're in.

And so i I feel very blessed you know to have a husband that loves me and told me every day of like every day of my cancer, whether I had no hair, whether you know um I was in the bathroom, whether I had you know this crazy bra on, you know like I just felt loved through it. And I feel like it's it's very important um you know to surround yourself with that kind of love you know of Whatever kind of support that looks like for you, but find people who will love you through it um Because you are beautiful each and every day of of your journey And so I think it's just important that you've you know, feel that and find people that tell you that as well She did yes, yes she did um, and I mean she looks great like she's she's doing great

Kathleen Moss

Did your mom have reconstruction of any sort?

Tina Conrad

Yeah, I just went to a softball game of hers today. She's 69 years old and she's out there you know playing women's softball, which is pretty amazing. you know So um you know just to see her and like you know living her best life you know and um it's great. So I think that she's you know so she's such an inspiration to me each and every day of wanting, continuing to take care, be active, um but also you know like help other women and you know um love them through it.

Kathleen Moss

So was her her experience having reconstruction probably informed your level of confidence going forward into reconstruction too?

Tina Conrad

Yes, yes, definitely. You know, things have even changed from the time that she had been diagnosed and then I was about 10 years later till when I was diagnosed. And then, you know, I talked to people now going through various things and things continue to advance, you know, each and every time. so you know, I think that is part of where the science is moving forward, you know, and and we need to keep doing what we can to keep that moving forward. But um, I'm, you know, it definitely gave me confidence that like, you know, hey, I can still feel like a woman, I can still walk into a room, I can still do all of this, you know, and, and feel my, myself, you know, and so, you know, that was a great example for me through all of it.

Kathleen Moss

Yeah, it seems like i I feel like if I put myself in your shoes or my niece who also works in a kind of corporate America retail job, I definitely would value my breasts more.

I think I would have given deep flap or implants a little bit more thought probably. So did you get implants?

Tina Conrad

I did. Yes. Yes.

Kathleen Moss

And you're 11 years out.

Tina Conrad

Yeah.

Kathleen Moss

So have you thought about getting your implants replaced or have you gotten them replaced?

Tina Conrad

I have not. It is on my radar to talk about actually I have like all new doctors because I'm in Florida. So I think that will but probably be like a consideration. My mom still has like her original ones too. So, but yeah, just like, um, I want to be transparent, like have those, I want to ask more questions. You know, like, I think, um, that's what's maybe great about our generation and below is like, we ask the questions, you know, we, we probe a little bit more. Um, maybe we're a little skeptical, but that's fine. You know, like that just means you're taking your own health into your hands. And I think that that's important.

So yeah, I want to do what's like best for me. I i don't know. I don't, I don't feel like I have to have implants like all of my life. I would be fine like with another route too. Um, so I just want to do what obviously gives me the healthiest outlook, um, on life in general.

Kathleen Moss

Mm hmm. Yeah, that makes sense. Yeah, I've met a few people locally who are in that spot where they're like 10 years out and they have been told in the past that their implants, you know, would last 10 years and they're just in that quandary of like, I don't know, should I get them replaced? And do I want to go through all that again? And it's an interesting little crossroads to reach, you know, especially as you're aging, this person in particular that I'm thinking of is quite a bit older than me. And she's like, I don't have use for them anymore. So maybe it's not worth the trouble. So interesting to think about all of those choices that we continue to have in this and this story.

Tina Conrad

Yeah, yeah It never, never, it kind of goes away, but it never goes away. you know oh So yeah, yeah. You never know.

Kathleen Moss

Yeah. I wanted to ask you about your spiritual life. Your podcast site has a really clear kind of progression into more and more talk of spirituality and especially within the Christian tradition. And I know that your spirituality, your beliefs and your faith have really informed the way that you look at your breast cancer experience. And so I wanted to ask you about um a scripture passage that you feel is central to your story and has given meaning to your breast cancer experience.

Tina Conrad

Well, actually, like just to set it up a little bit, I had had like a kind of a pain in like my arm, and so I had gone in to get some scans done. And then I was awaiting the results, because everything seems to take forever. And I had met my cousins, we had come from a very Catholic, um you know very religious upbringing. So to kind of meet them and spend time with them was was kind of very fitting.

And there was just a beautiful church in this town of, we were in like ah Covington, Kentucky. It was very near um Cincinnati. But anyway, um my one cousin and I decided to go to Mass and like, you know, go in and to this just beautiful, gorgeous church. And so we sit down and, you know, I did want, you know, time to kind of reflect and pray because of, you know, everything that was going on in my life. And I heard this verse, like this was like literally the the only like one of the Bible things that they read, but they talked about um the woman who touches the cloak of Jesus. And in it says, “but Jesus said, someone has touched me, for I perceive that the power has gone from me. And when the woman saw that she was not hidden, she came trembling and falling down before him, declared in the presence of all the people why she had touched him and how she had been immediately healed. And he said to her, daughter, your faith has made you well, go in peace.” And this was like the passage that they read and my cousin just you know turned to me and she said, well, if that's not a sign, I don't know what it is. And so we kind of had a moment you know just in church too. And so it was just it was very special and obviously the results came back and you know and they were good, but I have felt throughout my entire journey, you know, God's hand in all of it. And, you know, even like leading up to my diagnosis, I saw the most beautiful rainbow I'd ever, ever, ever witnessed. And it was just this immediate sense of peace came over me. And it was feeling like um it it didn't even matter what it was right or wrong, or good or bad, or, you know, positive, negative, all that thing, but like, God was in control, and it was okay. And it was just this piece that like, I can't I can't really describe other than like I just felt, and you know, this overwhelming sense of peace. And so that was kind of like the start of my journey. And then obviously I did get, you know, the news that I had breast cancer, but I always felt that God's put me on this path um to help other women to, you know, to be a light you know for others and to share like his love. um you know and And for me, it felt um not like a punishment. And there were times where I was like, are you punishing me? like I did ask the questions. I did you know wonder aloud. But I felt going through it, I felt more like an invitation.

Because I hadn't been as close you know to God, you know up it to that point I've been very career focused, you know, very very um Focused on things that like to me mattered at the time and and I think it kind of turned my whole world upside down with cancer But it was also a shot shine a light on many beautiful aspects and in faith was definitely one of them and so just to hear this passage and you know, in in this church, in this beautiful setting, it just kind of made it all feel like a painful circle. And, um you know, so so that's just been very important to me as my faith and sharing that, you know, with others and if you're not sure what to do, just, you know, pray or just ask God for, you know, for help, you know, and it's okay. It's just really a conversation with God is, is what I consider prayer. And so, you know, I, I do like, I have a Holy Bible app, like on my phone, I try to do various plans. Um, there's great things like when I was moving and I was really stressed, you know, I searched plans um you know that helped me with that. There's been times where I've had like difficult you know relationships. I've searched things for that. And it's just really helped point me to you know various scriptures that have helped me through through parts of my life. So I just encourage people you know to to have conversations with God and and it's okay. you know and And I do believe that God listens, and if you're open to it, um he's He sends signs. you know For me, they they definitely seem to come in forms of rainbows, um but you know I definitely see and hear of different things you know from Him, just it just it's a beautiful thing.

Kathleen Moss

Yeah, I can relate to the massive gifts of peace that descend on us in the most unlikely times and without even asking for it, without even knowing that it's possible, of course, because we're so out of touch with the spiritual realm, usually, at least I am.

Tina Conrad

yes

Kathleen Moss

And so, yeah, I love that. I love thinking about the spiritual world as a place of gifts instead of a place of guilt or shame, which is so often the case for us. I think we learn when we're younger you know about, well, I did. I have to speak for myself. like yeah There's a lot of fear. There's a lot of um judgment in the church. and And so I have a lot of injuries around that. And i I think that it's common to feel extra vulnerable as a breast cancer survivor and as a woman um in the midst of the common beliefs about “the gospel of health and wealth.” That if you do right, then God rewards you with good health and with lots of money. It's really common, I think, here in America. I feel like it pushes people's buttons to talk about God around health.

Tina Conrad

Mm hmm.

Kathleen Moss

But at the same time, there's there's so much of spirituality that can give us so much trust and an ability to live with the uncertainty that we have to make peace with some way or another. There's so much stress involved um when you're living in the breast cancer community, when you're not turning your back on it, but actually continuing to be there socially in it.

Tina Conrad

Yeah.

Tina Conrad

There's what I would consider people who are just so devout, you know get a recurrence to get metastatic breast cancer and it just doesn't seem fair. you know But I don't think we can think about things maybe it's not like this, in this case, this black and white, where I feel like God loves you through all of it. you know And so um it's just the peace that he provides you know through it. And so like that's that was kind of hard. um I had a ah ah friend you know that um had lost a son who was four years old, and I was really in that, in those days, like struggling with my faith, like, why God would you do this, you know, to this, you know, young child into this family. And it was, it really hurt me. And, um you know, it's just out walking and just kind of asking these questions, you know, like to God, you know, on my walk. And it's hard to like, it was just crazy. But this frog just came out of nowhere and started jumping and like, just being ridiculous, almost to the point where it made me smile and laugh. And I talked to my brother who was like really close friends with this family. He's like, that son loved frogs. like He just loved frogs. And so like to just put a little bit of levity on like a really tough situation, I feel like it's only something, like I can't explain that. like It has to be you know like something greater than greater than this world. And I've just had so many breast cancer sisters you know that I've lost. And it always seems like it's like three days later, I'll see a feather or something that's really reminiscent of like what they meant to me. and And so it's also given me peace you know that that they are someplace where there's you know a message or there's a sign or there's a bit of love or something you know that will help me through a hard time. And so that, I guess, is what my faith means to me, is just the sense of peace, you know even even in really difficult times. um And again, I don't know that it always has to be like four walls of a church, but it's just this relationship and invitation that God, you know I felt cancer provided to me that has helped me through so many experiences, not just cancer, but you know through throughout um the past 11 years, it's been it's just been a relationship with God.

Kathleen Moss

Yeah. Yeah. I'm happy to hear you tell that story. It makes me happy. I know it's it's tricky stuff and every single one of us has a different story to tell with regard to our faith. And you know, some people just get really triggered and really angry about it. But um I'm happy to be able to provide a platform for all of those different stories to be told and mostly just to hold it in mystery because as I get older, I realize how little I know and how little I can know. And it's nice to believe that someday we will understand much more than we do and now.

Tina Conrad

Yeah, yeah I agree. And I think we'll go you know we're all broken here on this earth, I feel. And I feel like there's a place where there's just true love. you know And you know I have not had kids, but I can only imagine like how a parent loves a child. like I do feel like that's how God loves me, you know is unconditionally, no matter my faults, no matter what I do, that I feel like his love you know is is always there. And so I think to go, in my mind as a Christian, I feel like to go to a place where there is just pure love, like that gives me hope, you know, each and every day.

Kathleen Moss

Yeah, definitely. There is a spiritual aspect to the community of sisterhood that we're a part of that I still haven't been able to put words to, but it is really powerful. it is the idea of solidarity of any sort, um coming through a struggle of any sort together with a common understanding side by side, shoulder to shoulder. There's nothing else like it that I've ever experienced and it is truly spiritual. um Is that part of your story and in terms of like how you created your your podcast. I feel like that's why I created my podcast is to transmit some of that out into the airways.

Tina Conrad

Yes, like the sisterhood. Like, it's amazing. um I've met such amazing friends, I've vacationed even with, you know, people who are breast cancer survivors. So, like, it runs deep, like, it's, it's really amazing. um Even when I started my podcast, um I met a great friend, Jen, who lives in New York, we've met, we've become, you know, not, not only like Instagram friends, but like in real life friends. So, I think it's the sisterhood is just it's just amazing. like it's like nothing you've ever experienced. And to have that podcast that I had, you know um to have others share their story and to watch their load just lighten, because for many people is the first time they were sharing their story like on on a public stage you know and so to see that lightning was such a gift you know for me to help, you know, um provide something where they could, they could share and they could talk about it and and they could feel lighter and freer. And then you know to to build this library of of women and then

you know, I know other women's that like are just going through it now and to to be able to say like, hey, I'm here whenever you need to talk. But there's also this like library of of women sharing their stories, you know, in in various episodes that you can listen to it whenever is convenient for you, you know. um and And I do have a lot of people that will go through, you know, each and every episode and or or ones that sound interesting to them or are facing something that they're facing, which is what you're doing, too, is building this like amazing library of voices and stories and you know hope. and And we can all connect with them in in some way or way or manner. And so I think that that's what's such a gift is to share that light and that love you know with others and and to see that support like in action is really important.

Kathleen Moss

Yeah, definitely. I want to talk a little bit about your podcast so people know where to find it. It's called DJ Breast Cancer and you have a hundred episodes now. So a lot, a big library that folks can just binge right through. And like you said, it is mostly women telling the particular part of their story that centers around their diagnosis and how they dealt with that in the aftermath and It's a powerful, powerful podcast and it's it's such a great contribution to the breast cancer community. Thank you for that.

Tina Conrad

Thank you. Yes, the first season was my story. And then I started to share other stories. um And for a time, I was very scared to share metastatic breast cancer survivors. I just felt like it wasn't my voice to be shared. um But I really had met an amazing podcaster, Emily Garnett, who just touched me in my heart in so many ways. um And I just felt like you know she she died in March of 2020, so right as COVID was like starting. She didn't die you know related to COVID. She died you know due to breast cancer. But I just wanted to share their voices. And she she was just very much an advocate of how How can we build a bridge between early you know stages and late stages if we don't talk? you know And so I just wanted to do something to honor her. And so you know I did devote a whole season to metastatic breast cancer. and you know And it's very disheartening, because many of those guests are no longer with us. you know And that was you know just you know several years ago. And it's I think that's what keeps me up at night and makes me want to do more, makes me want to drive research, um because we need more time. We need more options. We need more choices. We need more trials. like All of that is so very important to me. You know, so that we we can honor those women and do more for them. Like, it's not enough. like And so we have to keep pushing the science forward.

Kathleen Moss

Yeah. Is Emily's podcast still available to listen to?

Tina Conrad

I haven't tried lately. I felt like many things kind of had started coming down, but it was called the intersection of cancer in life. Um, and she's just an amazing woman.

Kathleen Moss

As we wrap up, I just want to ask you what I often ask my guests if we have time at the end of each interview, which is what would you tell a newly diagnosed patient that you wish someone had told you?

Tina Conrad

Actually this is something that someone did tell me and it was very helpful, um which is kind of create like a central communication hub. Like it's very exhausting to try to keep up like, Oh, did I text that person? Did I text this one? Did I email, you know, all of this. So my aunt had told me like start a blog, like, or a Caring Bridge kind of site, like they have a free, great site, but it's just a place where everyone can have a way to access your information and it doesn't exhaust you. like Cancer is exhausting enough versus like worrying if everyone's like keeping up. like You have a place, they can go to it, they can find your daily or however ah much you wanna update. um And I think through that, like writing became so important to me um And I encourage everyone to write. There's so many feelings you're going to go through, and I think it's just important to write them out. It doesn't mean you have to share it. like I know we're both very much advocates of wildfire contributing and I encourage you to contribute and to you know do all of that. But if if you're scared or you just you're angry and you want to burn it, like go ahead and burn it. I don't really care. I just think that there's something so powerful about releasing a lot of that feelings and emotions. So there's kind of a practical sense of like sharing your, you know, updates with everyone so it's not exhausting you. But then there's just this beautiful part that comes with it, which is writing. And, you know, for me, it was poetry and rediscovering this love of poetry. I used to write poems when I was like in high school. um and And I just kind of rediscovered it. And and it just, you know, ah it it's just a great way to get in touch with your feelings. And for me, um it's almost then like I'm, I have more control over my feelings because I don't let them have control over me. And so it's this relationship of kind of give and take. And I'm like, okay, I'll sit with you for a day or two. Cause this is really bothering me. It's triggering me in some way, but I'm going to write it down and like, what, what is it? Like, what is really bothering me about this? And so, I try to definitely write it out. I keep a lot of journals, a lot of notes on my phone. um You know, you can just write it on a scrap piece of paper. You know, it doesn't matter, but I think that um writing is just so therapeutic. It's just very, very helpful and I encourage anyone. Again, you don't have to publish something or be this grandiose thing, but it's just very, very powerful to to have it and to even reflect back on things that you wrote from years past. you know So I'm 11 years out and to see things that how raw it was you know when I was going through it, um it's good sometimes to like kind of check back in with yourself and see how far you've come and that and that's great too.

Kathleen Moss

Yeah, the reason this podcast is called a breast cancer diary is that I started a diary video vlogging diary on Instagram and called it that and That was the most healing part of of my whole process. I needed a lot of healing. I was really angry. I didn't like the way that my surgeries turned out and the way that I was being guided by my oncologist initially. So I'm a huge advocate for writing writing things out or sharing, speaking things out. And just recently, I got a brand new appreciation for CaringBridge, which I hadn't really experienced very much but I had a friend with metastatic cancer. um She was in the breast cancer community because she was a pre-vivor when I met her and um had had prophylactic mastectomy but she ended up succumbing to a different type of cancer just this year in October. And she had been writing really regularly on Caring Bridge. And I was supposed to meet up with her in October just a few days after she died. And I had lost touch with her. And I assumed that she probably had passed and was just really longing to connect with her and hear about that that last period. And I could go back and read her entries on Caring Bridge and feel like I was connecting with her and her family through that. So that was a huge gift from her to me as her friend, just to have that closure.

Tina Conrad

Yeah.

Kathleen Moss

So I really, I'm a huge fan of that that technology now. And it yeah, it's wonderful that it is free.

Tina Conrad

Yeah, it's, ah it's beautiful. It's a great gift to your point. that just helps so many. you know like it It helps people through it and process their feelings too. I think people can comment. you know So it's it's a great way for everyone to stay connected in this day and age.

Kathleen Moss

And I'm glad you mentioned your poetry because I know you're contributing a book of poetry to my raffle giveaway that's going on now for the opening of season two. I'm offering for folks that are willing to send me a screenshot of your rating and review of this podcast, um enters your name in the raffle to win some wildfire magazine issues or Tina's poetry, and then some some wearable art as well.

Kathleen Moss

ah So be sure and and rate and review and send me your your screenshot at my email address at kathleenmoss@protonmail.com If you'd like to read some of Tina's poetry, I look forward to sending that out.

Tina Conrad

Thank you.

Kathleen Moss

Yeah, thank you for contributing! All right, well I will hope to talk to you again soon Tina and I hope that you're settling into your new home and really nicely and able to hibernate there this winter, even though you're in Florida.

Tina Conrad

It's such a, it's a different it's a different life, but it's good. It's it's really good. so So yeah, looking forward to um no snow and to, you know, more sunshine.

Kathleen Moss

Good for you. You deserve it.

Tina Conrad

Thank you.

Kathleen Moss

Talk to you later.

Tina Conrad

Thank you.

This episode is an update from my personal story. I had a recurrence scare in November/Dec/January of 2024 and 2025, and this is the way it's sorting itself out. Always something to learn! --Kathleen

Transcript:

Welcome back to season two. Today's episode is episode three of this new season. And as promised last week, I will just be talking about my own story this week. I had a recent recurrence scare and I think it's resolving nicely. It's kind of an interesting non ending that I'm at right now. I really thought that it would be all understood by now, but it's still a little bit of a mystery.

But, um, at least my pathology came back okay, so that's good. And I, uh, Wanted to share this, not because I think it's so interesting or profound, but because I think it's good. You hear a lot of stories of recurrence that don't end well or that end with cancer, and you don't hear a lot of stories of recurrence scares that do end well.

And I think a lot of us keep our recurrence possibilities really silent because we don't want to worry people, and that's a really good intention and probably a good plan, but When we do keep them completely to ourselves, it can really eat away at us. And so I want to encourage people to tell their stories and be open and willing to upset people or worry people.

It's been really hard for me to do so. So I'm not saying it's easy, but I just want to set that example for anyone else out there that struggles with this. I know a lot of us have quite a few recurrent scares in our journey. So it's unfortunately something that happens pretty often for a lot of us.

So I'll tell my story briefly. Started in early November. I had a little lump about half the size of a dime and maybe two times as tall as a dime on my chest right in the center and thankfully it was in a really easily identifiable spot because I had still have a floral tattoo on my chest, and it was right in the center of one of the roses on my chest.

And so I went to see my oncologist. I actually happened to already have an appointment with her set up, so I didn't have to scramble to set one up. And it actually was still there when I got there, and she felt it too. And as the days passed, uh, through mid November, it got a little more tender, a little bit more painful to the touch.

And then suddenly, one day, it was gone. And she did order an ultrasound, but that ultrasound took many weeks to set up. I won't go into all the reasons why, but, uh, it was quite delayed. And before I even got to that ultrasound that she ordered, STAT, in early November, I was ordered an MRI from months prior, just on a regular schedule, to do an every other year MRI for surveillance.

because I still have a little bit of breast tissue, um, possible in my Goldilocks mastectomy side. And so I'm eligible for an every other year MRI, which is nice because I really like the idea of doing surveillance as much as I can. So that came up actually before the ultrasound. I did finally get the ultrasound set up for mid December.

Um, but, um, The MRI came up beforehand and it was in the first week of December and by that time, the lump had completely disappeared. I had no thought of it. I actually never really got worried about it because I've had so many little false alarms on my chest. I've had little bumps and lumps and, um, cysts and, like, Just tiny little skin things that are irritating.

I've just gotten used to having those. I've never had them ever before breast cancer, but I think it's pretty common to have them after. And so I've had so many false alarms that I've just been kind of numbed to them. And so I wasn't worried about it, didn't think a thing of it. I thought I had completely resolved until I got the call from the MRI.

um, assistant, the radiologist assistant saying that there was something on my MRI and they wanted me to come in for an ultrasound. So I said, well, I already have an ultrasound set up. So that's perfect. I don't even have to wait this time. So um, I did have that, assistant person who called me, read me the orders from the radiologist because I knew it would be really hard to get access to that.

And I knew I'd be worried about that. And so that's something I'm really glad that I did. Unfortunately, she didn't read me the whole thing. She summarized it in her own words and got it way wrong. And so, which is a good thing. In the end, it was a blessing because I was a lot less worried. Um, there were actually two areas of concern on that MRI.

One was in my chest wall and one was in a lymph node. So as soon as I heard from her about this, I went and felt for my lymph node, and I felt it right away. It was like the same tender kind of lump that I had felt in my chest, the same feeling had kind of migrated into my underarm. And from then on I felt it just about every day just to kind of keep track of it.

And Pretty soon after that, I did have the ultrasound just a few days later, and so that was good. The radiologist that I go to for my ultrasounds now, is not a part of my hospital system. She has her own private clinic, so she runs her own radiology clinic and imaging center. And so, um, she always does this, which is amazing, but she offered to just go ahead and biopsy.

it with a needle right on the spot, um, because she did see concern. She did, uh, rate it as a BI RADS 4, which is suspicious. She called it a lymph node. She said she would do a little needle biopsy, and I said, No, I really want to wait, talk to my oncologist. I don't want to jump into anything. I think I might want to have the whole lymph node out.

Mostly because I, I've had a history of lobular breast cancer and I know that needles can miss that in biopsies. Um, and then later on I was thinking about it and I thought, oh, I know another reason why I said no. It's because I have a reaction to titanium and I knew she'd leave a titanium clip in,

as a marker, and that would have been a really stressful decision for me on the spot. So it's really good that I had time to think about it. I had time to email back and forth with my oncologist who was on leave at that time. She was on vacation, but she was great at responding to my emails and I decided to have Or to try to have a surgical biopsy, which means you take the whole lymph node out as a whole with an incision, um, small surgery.

And I couldn't find, at first I couldn't find a surgeon that would do that. I talked to one surgeon and her staff and she said no. And then the second surgeon I talked to was my actual first breast cancer surgeon. She had done my first mastectomy and she said yes. So we scheduled it, it was just a week later, it was a week ago.

And a week and two days, a week and three or four days ago from now. And I had to go under anesthesia and it was just really clear. She said she remembered where it was. She didn't even like feel for it to see where it was. She just drew a little line on the edge of my, where my chest meets my underarm.

And she did the incision. And at the end of my surgery she told my husband, I think I got it. I didn't see it, but all I saw was scar tissue, so I wouldn't have seen it. Um, but I believe it was inside. What I did get had to wait a week for pathology and just a couple days ago Pathology came back. I Went in to see her.

I had scheduled an appointment to go over pathology and just before I went in to see her I did peek at my chart, which I am NOT Now, I am regretting that. I'm not thinking that was a good decision and I think in the future I will try really hard not to look at my chart to find my pathology report before sitting in a room with a professional because what it said was no lymphoid tissue detected.

So basically it said nope. We didn't get the lymph node and I was flipping out. I was like, Oh no, I just went through all this surgery. I didn't anesthesia, all this recovery, you know, everything all for the sake of not getting a single thing. We missed it. It's still in there. I showed up to her office just a couple hours later and with that attitude of like, Oh, Dang, let's get an ultrasound and make sure it's still in there.

And she said, Oh, we can't have an ultrasound. Um, you're all inflamed from the surgery. You'll be inflamed for at least a couple months. We'll do it in about three months. And I was like, I can't wait three months to find out if this thing is still in me.

Can you do it a little sooner than that?

She said, yeah, she could do it in two months, but no sooner than two months. So I was like, Oh man. And she said, I really don't think that it's still in there. I think it never was. There never was a lymph node in there. And at first I was like, I mean, It was in there and then it just went away right before surgery because I felt it in there.

And she was like, no, I think it was maybe something else that looked a lot like a lymph node. And, um, just was really, really convincingly looking like a lymph node on both the MRI and ultrasound. And I said, well, all they found was fat and scar tissue on the pathology report. So how could those things be?

And then I showed her my latest ultrasound. which had just happened less than a week prior to surgery. It was just three days prior and it said that I had blood flow detected to the lymph node that they were supposed to take out. And I was like, there's no blood flow. That goes to fat or scar tissue.

Like that doesn't make sense, right? Like, and she couldn't really answer that, but I came out of her office feeling really, really confused. Like my head was just spinning and I knew I should be grateful that pathology said it was benign tissue. There was no cancer. That's the result that I was desperately wanting.

But I, the fact that I couldn't understand the story and the narrative, I couldn't put it together. It was another puzzle that I couldn't solve, was really frustrating to me and I'm sure it would've been to anyone. And so that's kind of where I'm at now. Um, it wasn't as black and white as I thought it would be.

For the first 24 hours after my meeting with her, I was thinking, I'm pretty sure there's still a lymph node in me and we're gonna find it in two months. Um. Then, you know, I went to bed and woke up the next morning and thought, you know, maybe she's right. Maybe there's some other explanation. I need to keep learning.

I need to keep asking people who would know. So my oncologist might know. I'll talk to her about it. I have an appointment with her next week. Talk to other breast cancer survivors. Maybe they've had this weird situation where they had something that looked like a lymph node inside of them. And uh, One of the things I really started to do was kind of blame myself for not getting that titanium marker, which is kind of the protocol for these situations.

You want to mark the lymph node before you take it out. And yet this surgeon had said she didn't need a marker. I was willing to get one when I went in with her, as long as she was willing to also take out the whole lymph node along with the marker. She said she wouldn't even need a marker. That was really reassuring to me at the time, but then I thought, oh man, how stupid was I if I'd only had a titanium marker put in?

I would know if there was still a lymph node in me or not. It would be really clear that either what they took out with the marker was not a lymph node and we thought it was, or they didn't get the marker, so they didn't get the lymph node. Very black and white. This is kind of kicking myself and really appreciating the wisdom of protocol, but Over the days, the last few days, I've had more insight and I think now I'm realizing that I can create the narrative for myself.

I don't know what's true, I may never know what's true, that may really drive me crazy but I can create a narrative of what is the most plausible, the most likely situation in light of the fact that I have a strong body that has incredibly strong markers right now. I'm not. having like high cancer markers or anything like that.

All my inflammation markers have been low prior to surgery. So I have every reason to think that my immune system is strong, my body is strong, and my body is able to fight off anything that would be concerning. So worst case scenario is there was a lymph node that was concerning and it was starting to build a blood supply and that would have been really worth worrying about. Maybe when it started to build the blood supply and my body started to detect what was going on, my immune system came in and zapped it and it was all just necrotic tissue and it just showed up on the pathology report as necrosis and fatty necrosis because it was just that. that my body had killed the lymph node, and it was no longer recognizable as a lymph node.

I don't know if that's even possible, but I definitely will run it by my oncologist. But that's the narrative that I'm going to tell myself, because I can. And because I have nothing else that is Conclusively true, that I can tell myself. Uh, which is so often the case in these situations. You don't get the black and the white, you get the gray.

You get more complexity instead of more simplicity. And that can be frustrating. So that's kind of where I'm at now. I'm still kind of wondering if there's a lymph node in there. I can feel without pain and kind of feel around and I don't feel a lump anymore. So that's part of the reason why I'm thinking maybe it's not.

It is really confusing to think about that. Last ultrasound report saying that there was some blood flow and I would like to talk to my radiologist and I'll get to when I get that next ultrasound. So I will get to pick her brain about that as well, which will be really good. So I'm very fortunate I have access to all the people that have all the information.

Just need a little, wait a little while and get that information. Um, and just be patient. And then I'll maybe have an even more convincing narrative to tell myself. But I just realized, like, this time around, you know, in my mastectomy experience, I had this little journal. It was like a little travel journal that fits in your purse.

And I used that to note all the facts and diagnoses and terms and research that was important to me and my journey and decision making. But I didn't write a narrative in it. I didn't, Tell my story and this time I have a bigger travel journal and I'm calling it my surveillance journal for the rest of my life after the initial occurrence and I'm gonna write in there all the facts and dates and figures and you know diagnoses and terms But I'm also gonna write the story.

I'm gonna write it in my own words I'm gonna write what I believed and what I told myself Um, because I think that is even more important than keeping track of what happened in a clinical sense and a literal biological sense is what did we tell ourselves about what happened? How did it feel? What did I notice?

What were the things that were standing out to me? Because my intuition is the most important intuition in the room and my story matters. Even if it doesn't make the doctors do things differently. In this case, it actually did. My story and my desire to have a whole lymph node dissection through surgery was actually granted.

And that's another part of the story that I'm really glad for because I was heard and people took me seriously and, um, they did things a little out of the ordinary because of my story, because my story mattered to me. So that's something I brought out of this kind of flustering, confusing, um, recurrence scare besides the fact that I'm just grateful that I am a well individual now.

I am not sick as I feared that I would be. And then I've also been kind of struggling with The idea of when these things happen, it's so freaking awkward to like think about who I want to include on my updates every week when I get new information. And I hate putting that email list together. And so this time instead of just assuming that my closest friends and family wanted to be on an update list and putting an email together and forcing it on them like I did in my mastectomy, which I think is pretty fair, This is not a mastectomy, it's a little less intense.

So what I did is I waited for people to hear my story in person from me. And then if they said, keep me updated, I'd say, would you mind if I put you on an email list because I will forget to individually check in with you. There's too many people that want to be updated and I know I'll forget someone.

So if you don't mind, I'll just stick you on that email list and I'm going to write an email update. And they'd always be fine with that. So, over the weeks between November and January, while all this was happening, I added people to that email list. And yet, I still felt a little bit, like, overly verbose, overly worrying them, maybe not having permission to give them all the nitty gritty details.

And so, I've decided that in the future, another approach that I'm going to take is, I'm going to do, like, it's called a Caring Bridge blog it's like a, an online, a free online resource for people who are sick, who just write what's going on with them. And the people who really care, who really do want to know, will either subscribe to that and get a notification each time a new thing is written, or they can just check in when they get worried about that person.

And maybe they won't get worried about that person until they die. But. My insight recently was my friend died. She was down in San Francisco. I was going down to San Francisco. I told her I'm coming. I'm gonna come see you. It doesn't matter if you're sick. She had metastatic cancer. It wasn't breast cancer.

Um, and, and then my email or my text messages started to not getting replies. So like right when I left to go down there, I didn't hear back from her. And then I didn't hear back from her and I thought, oh my god, she's, she died. I know she died, I just feel it. And I chose not to check in with any of my friends who were on Facebook, cause I don't have Facebook on my phone, but, I figured it would be on Facebook but I decided to go ahead and enjoy my trip in San Francisco and wait till I got home and then I would ask a friend who was on Facebook, um, and I think I was in the airport when I asked my friend, have you heard anything about Susanna?

And she said, oh yeah, I'm just checking now and it does say that she passed away a couple weeks ago. Anyway, Susanna had a CaringBridge blog and I had been checking it. I didn't have it set up for notifications, but I did know how to access it. And I'd read a couple of her entries just prior to my leaving town.

And I thought it was such a gift that she made that blog, um, because I could look back as far as I wanted and hear as many details as I wanted about her sickness and her struggle and being in hospital and everything. Um, And I could only, you know, do as much as I want and no more, but it was so nice to hear her whole story from her perspective at the end of her life in a way that was concise and didn't exactly have an end because you never know.

And she got a very intense infection at the last minute. So she didn't really know that she was dying, but I thought it would be nice to be able to leave that. It sounds morbid. It sounds like you're, you know, overly focused on the future maybe, but I think it is. It's kind of a gift, like, so I decided to start a CaringBridge, and I'm not gonna write much in it because not much is going on for me right now, but as I do work on how to resolve the stress that comes with these kinds of things, and I, my guess is that I'm gonna just kind of take my surveillance into my own hands and spend some money that insurance would not reimburse me for, and go to get a diffusion weighted MRI, which is much more specific than a typical MRI.

Or maybe I'll find an amazing liquid biopsy that's actually proven to work. Some of them are showing promise, but a lot of them are just not there yet. So I want to record those things too, because I don't want to be like slammed with a shocking diagnosis the way that a lot of my friends have been. I want to be tuned in to what's going on.

And I think I am to some degree, but It'd be nice to do so biologically and insurance doesn't pay for the things that would really help me do so in a way that would give me a lot of peace of mind. So at least I can track that on my caring bridge blog. And I think Then it won't be quite as shocking for me, and it won't be quite as shocking for others that really care to know what's going on with me medically.

So that's kind of my resolution coming out of this. I'm not saying this because I'm sharing my CaringBridge blog with you. I haven't decided to do that yet. It might be searchable, but right now it's set as private, and I haven't written much on it anyway, so. Uh, if anyone wants to ask me to be added or to be given the invitation, absolutely ask me.

My email address is KathleenMoss at ProtonMail. com. I'd be happy to add you, but I don't know that I'm willing to put myself on a searchable directory or something like that yet, because I'd like to be able to share really, really honestly. And, uh, Um, maybe do so there instead of on Instagram because of the way that the social media networks are headed.

I'm just not as fond of Instagram anymore and certainly not Facebook. So I may just replace some of my deeper sharing and put it in that direction. And that's all I have to share today. Uh, next episode, actually the next two episodes will be interviews because I took this little pause to talk about myself.

I thought I would go ahead and do two interviews in a row next week and the following week. And they're both other breast cancer podcast hosts, uh, Tina Conrad is no longer a host. Her podcast is no longer active, but there are like a hundred episodes. So you can listen to her at DJ breast cancer and Christina Miner is also hosting currently, she still has an active podcast and hers is called Our Scars Speak. So if you're interested in those, um, and want to listen to them in preparation for my next two interviews, uh, go ahead and look those up. They're great podcasts. I've really enjoyed both of them and I will talk to you next Sunday when I'm interviewing Tina.

Talk to you then.

The topic of breast surgery and skin conserving surgery has been a real trigger for me in the past since my first plastic surgeon kept refusing to take the extra skin off of my chest as I requested. The fact that I could talk to Lisa about this without getting emotionally worked up was one good sign--and then I had two other chances to talk publicly about my flat denial story in the past month as well. When it rains it pours!

Transcript:

 Happy New Year and welcome to season two of A Breast Cancer Diary podcast. Last week, I aired my first episode of season two with Lisa Sylvester, founder of the project Still.Me or “STILL project.” She is just now coming out with her new book or two different books, actually the compendium and the anthology of her photography and storytelling project, called "Project Still Me". And the website is project-still.me if you want to look it up, um, it's now available for sale. So on the day of the last podcast episode airing, it was the day before it was available for sale. So if you heard that podcast right away as it aired, you may have been too early to purchase her two different books.

So just want to remind you to go back and do that now if you intended to, those books are ideally for the eyes of patients and surgeons, and we talked a lot about the idea of reaching out to surgeons to help them to understand the second half of the story, the half of our lives that happens after we interact with them.

Uh, a lot of breast cancer survivors have different things that happen, um, whether they explant or go on to really appreciate their new bodies. Their surgeons don't always get to hear about it. So Lisa's mission in this project, which was an amazingly ambitious and talent filled project of mostly photography and, publishing and graphic design,.

This is meant for the eyes of surgeons, especially, and hopefully, we can all come together to partner with these surgeons of ours to get it out in the world and allow them to use it as a tool in their consult rooms prior to surgery. And all of the women in the STILL anthology are, flat. They went flat either after having implants or just straight to flat after a mastectomy.

And so it's just another alternative to the very, strongly pushed option of, of having implants. That's so common right now. Lisa has been working with Kim Bowles from Not Putting on a Shirt and getting connected to a very special conference coming up this spring called ASBRS. It is a special conference that is just for surgeons.

At this time, unlike some of the other breast cancer conferences, They don't allow advocates into this conference, so there's not an open door for advocates or patient advocates, um, to come in and have a voice. So, unfortunately, we flatties won't be able to attend that conference unless we're doctors, um, especially surgeons.

I think, even if you were a doctor and not a surgeon, you probably wouldn't attend that conference. But it is in Vegas this spring, and the hope is that surgeons will be at least open to the idea and will see some of the images in large scale format. Um, they're going to have them in big posters at the conference so that they're hard to miss.

They don't have to walk up to a booth or a table to look at the book. They'll have, they'll see the posters in large scale format and hopefully some surgeons, um, some of them already are big fans of going flat. They can appreciate going flat, but a lot of surgeons are really pushing implants, and there's this kind of common narrative that's going around.

I'm not sure where it started, but, um, there's a belief among surgeons that women are way more, mentally well in the long run if they have implants because their bodies look more like their natural bodies or, the bodies that they had prior to mastectomy. And that is, A really great assumption. I mean, it's a natural assumption that I would agree with if I hadn't been through this, um, and talked to so many women with implants, many women with implants are very, very happy with their implants, but

many women with implants are not and the truth is that many and most of us who are flat are very happy with our new flat bodies. And I actually had a chance to testify to that in person, um, with my knees knocking at the big breast cancer global gathering in San Antonio this last month in December. I wasn't planning to take the mic and talk to a room full of surgeons, but I just happened to stumble into, um, a talk, uh, about a couple of different studies and I didn't realize going in that the studies were about this topic of mental wellness post mastectomy and, with skin sparing and tissue sparing mastectomies being preferable for women's wellness and mental health as the argument.

And I haven't looked at the details or the methods of the two studies mentioned. They were studies out of Japan and the UK, but the outcome of those two studies was arguing for saving as much breast tissue and skin as possible for the sake of, of long term mental health and wellness of women patients.

And that kind of, you know, triggered me a little bit and made me wonder if those studies were well administered or if they were asking leading questions, which, you know, those kinds of studies almost are guaranteed to be doing. If you agree to do that kind of study, you're kind of going in with the expectation that you're going to want to praise your personal doctors who've saved your life and saved you from breast cancer instead of criticizing them and the work that they're doing.

So, It's really hard to be objective as a patient in that kind of study. It's a questionnaire based study, usually, and it's not done personally. It's not done within the context of community, which is where a lot of our body image healing happens in the context of community. But if you're doing a little survey and you're isolated and alone and you haven't had conversations with other survivors about body image issues, then you may not have even broached the question before.

So it's a much deeper issue than what these surgeons were, um, you know, optimistically thinking. And the sweet, sweet man who was presenting the data was just so well intentioned, I couldn't possibly be critical of him. I did wanna tell the other side of the story because he was really arguing for pressing women to save as much breast, tissue and skin as they possibly could.

And so many women do not want to save their breast tissue, number one, because they don't want to fear their cancer coming back in that breast tissue, which is a legitimate fear. Um. And so I got up to the mic and said, I am just one person, but I'm very happy with my flat body.

And I want to tell you that there are a lot of us who are pleased after going flat. There's a lot less anxiety, a lot less fear of recurrence, whether that's legitimate and rational and based on data or not. It's true. And without any breast tissue, I feel lighter and more comfortable in the world. And I.

didn't take long to get used to my body and I'm heterosexual, female presenting, married to a man who is male presenting. And I'm very, very happy with this flat body of mine. And I had to fight for it because my surgeon wasn't willing to give it to me when I asked twice. And the third time I went to a new surgeon and got what I wanted, which was flatness.

And of course, you know, I was super nervous, shaking. I didn't want to stay in that room a minute longer than I had to. And the man that I was addressing was very gracious and kind in his response. His motto was, think twice, cut once. Meaning, think twice about taking that extra tissue and skin and then cut.

And I told him, I would like for you to think twice and ask once and cut once, but asking is really important. And that's something that was not truly done for me and so many of the women that I've talked to that have been denied flatness. So that was a big kind of marker in my life as an advocate and, activist. I was really uncomfortable the rest of the whole day, walking around knowing that some of the people in that dark ballroom that I had spoken up in, probably knew me where I hadn't looked at their faces.

And I felt really uncomfortable in one sense, but also very gratified. in another sense. And actually this last week I had another really amazing opportunity to speak up about my experience of flat denial with my former surgeon, not the plastic surgeon that denied me flatness. That would have been extremely intense.

And emotional for me, but the other surgeon who was in the room, my breast surgeon, who I think knew that I wanted to be flat both times. I'm not 100 percent sure that she knew that because most of my conversation about wanting to be left flat was with my plastic surgeon in a one on one consult with her.

So I wasn't really resentful towards this breast surgeon of mine. But I didn't know if I'd ever have a chance to talk to her in a clinical setting again. Unfortunately, I've had a little recurrent scare, and so I did have a chance to talk to her this last week. And I told her very clearly that I was very unhappy with the outcomes that I was left with on both of my first two surgeries with her and that plastic surgeon.

And I asked her if she still used that plastic surgeon, and she said she did. And so I pressed her to really think about it and I gave her some literature from Not Putting On A Shirt and Stand Tall AFC to point out to that surgeon in particular about how women who say they want to go flat really want to look, we want to look flat without any extra skin.

And so I was very direct with her and kind, and I think I got my point across, and I still trust her enough to go into surgery with her. Uh, this week, I'm going in on Thursday for, uh, a surgical biopsy, uh, for at least one lymph node. I feel another lymph node kind of, you Coming out too, so I may have two lymph nodes that are taken out, but we'll see what comes out of that.

I thought that my own personal breast cancer diary was over, but we may be having some diary entries about my continued experience here soon, both on my YouTube channel, Estrogen Diaries, and here possibly, because I don't want to leave you in the dark about what's going on with my personal diagnosis and my own story as I'm telling other people's stories here.

So the other thing that I talked to Lisa Sylvester about last week in the episode that aired on Sunday was her BRCA2 mutation, and I also wanted to address that. Two, two topics I wanted to talk about today. First was breast surgeons and plastic surgeons in particular. Second one was the BRCA2 mutation because I hadn't had, I don't think I've had it a guest yet that had um, prophylactic mastectomies because of the BRCA2 mutation.

And I talked to Lisa a little bit about her kids and the fact that they would eventually get tested for that same mutation. Just wanted to describe a little bit about what BRCA2 is. There's BRCA1 and BRCA2. They're both mutations in a very good gene. BRCA is not a bad gene, it's a good gene that we all have.

Um, you And if you have a mutation in it, it means that gene is broken. So the, the gene itself is a, a cancer DNA repairing gene. So it repairs the DNA that would lead to cancer or further cancer growth in specific cells. Um, it's kind of a, a self fixing bit of DNA. And that gene is, is a really, really life giving gene.

And for whatever reason, some individuals have developed mutations that can be passed down from father and grandfather, mother and grandmother, and they don't hit everyone. Of course, it's not guaranteed. They're going to be passed down to you if your mother or your grandmother had them. But once you know that someone in your family has had them, it is very wise to get tested these days.

And not everyone, but some individuals who are testing positive for that mutation. So that broken. bit of DNA of genetic, um, machinery do choose to have prophylactic mastectomies, which is a preventative mastectomy, to ensure that they don't ever get breast cancer by taking out all of the breast cells, the breast tissue.

And it also puts your, uh, ovaries at risk of ovarian cancer, that mutation. So some women go as far as having their ovaries removed as well. And that's a really intense and personal decision. Um, it's something we may talk a little bit more about with others who come on the podcast. But for now, I just wanted to define what that mutation is, how it works, uh, why it's a little bit scary and why so many women are sacrificing their breasts because of it.

There have been. Celebrities that have sacrificed their breasts because of this mutation. And I'm sure there are celebrities that have not done so. Because there are plenty of people who have the mutation that have chosen not to give up their anatomy because of it. It's a tough decision. Something that you really should talk to a genetic counselor about because that's what they're trained to talk about.

And probably just a regular mental health therapist would be a good one to talk to you about it as well if you're interested and you're testing positive for BRCA2 or BRCA1. In the future, I'm sure we'll learn about other mutations that are passed down. Germline mutations are what they're called. Um, there are also a different type of mutation that happens inside your particular tumor and your particular cancer cells, um, that are not passed down from your

mother or grandmother, and those are called somatic mutations. So that's pretty confusing and really basic if you're interested in breast cancer science and studying some of the genetic studies that are going on right now. There's so many of them. A lot of why our cancers mutate and develop strength over time.

And come back and recur and develop metastatic strength is because they have that ability to mutate somatically. So within the cell, within the tumor. Um, so it's something that's happening just in that little microenvironment of the cancer. And we don't understand why or how that happens, and we're developing drugs more and more to address each mutation.

which is really, really hopeful. Um, it's amazing how fast we do move considering all of the barriers in place that keep us from moving fast in developing new drugs. I'm always in awe when I'm down in San Antonio at that conference that I went to last month, learning about all of the drugs that are being tested.

in a given point in time. I also learned a lot about, um, a, a really fun study on DCIS that I'm super excited to follow. It's still very, very young in its development. It's only two years old, but they did do preliminary data reporting on it. I'll, I'll do a video on that soon on my estrogen diaries, YouTube channel.

So stay tuned for that. The next guest that I'll have is Tina Conrad from. The podcast called DJ Breast Cancer, and she's no longer running that podcast, but she has lots of episodes and seasons to listen to, and I'm a fan of that one. It's just another storytelling podcast telling individual women's stories in their unique ways and unique perspectives.

So we'll hear from Tina, Her interview is mainly about, um, being a professional with cancer, with breast cancer and staying a business professional with breast cancer. Most of us bow out of our high intensity jobs as breast cancer survivors, but some of us stay with them and she was one that stayed with it.

And I'm just so in awe of that and I wanted to hear more about that part of her story. So she'll be my next guest, but not necessarily next week. I think next week I may do kind of a last minute update about my own cancer recurrence scare and how it turned out. I should know. Um, hopefully I'll know my pathology results by then, and hopefully this will all be behind me, but I can kind of tell the whole story from start to finish, um, in the next episode if there is anything to worry about and tell you my next steps and my plan, uh, just to let you know kind of more personally what my December has been like, it's all been within the month of December that I had an MRI and ultrasound, and now I'm having biopsies, so I will keep you up to date in my personal story in the next episode, I'm hoping, and in the meantime, I will be On, estrogen diaries, making videos about the San Antonio Breast Cancer Symposium.

So, watch that if you're on YouTube. And I will see you in one of those places very soon. Again, Happy New Year and stay well.

My instagram friend, Lisa, had a vision less than a year ago for a visual way to show the how the flat community has become a healing movement for women who don't want the usual reconstruction options post-mastectomy, and this week it is coming out into the breast cancer space as a work of art! I love that I can share the story of a vision come true and share it on the day before the end result comes into the world! Find Lisa's project on her website here: 

https://project-still.me/

Transcript:

Kathleen:

My guest today is Lisa Sylvester. She lives in Richmond, Vermont, and I've been following her on Instagram for probably about a year now. We're fellow Flatties and proud of it. And she's the owner of a company called Interrobang Design. She and her husband run this company. Small business in Vermont, and it's a graphic design studio, and she has a new project coming out of this graphic design business that I'm so excited to talk to her about today. I haven't really dug in with her about it just because I wanted to save the conversation for the podcast. So this is really, truly fresh, new information that I'm super excited to hear about. Welcome Lisa!

Lisa Sylvester:

Hi. Thank you. Well, I'm happy to be here.

K:

You're a previvor. So Tell me a little bit about how you found out about your BRCA2 mutation

L:

Yeah. So I have been having breast cancer and ovarian cancer scares like throughout my adult life and my OBGYN worried about me and at one point she said, you know, what do you think about doing genetic testing just so we can know if we are really have something that we need to be aware of, uh, you know, could inform my healthcare kind of thing.

And I was like, yeah, let's, let's just find out. And I thought it was going to be negative. I don't really have a strong. Um, family history of cancer. In fact, no breast cancer history at all and only one, um, ovarian cancer, um, person in my family. Um, my genetic counselor thought it was going to be negative two.

Um, and so we were all surprised when we came back with a positive for BRCA2. Um, so I'm the first in my family to find out about it. which was the can of worms everybody warns you about with genetic testing because that meant I now had to inform my entire family about this new, new this news.

K:

And how long ago was that?

L:

That was three and a half years ago. And I was pretty, I'm pretty, I'm a research monger. So like when I found out about it, I was like, okay, what are we going to do about this? And I knew what my options were before I had my consultation with my, um, doctor and, and, um, it was my genetic counselor and an oncologist actually, and, um, they were surprised that I wanted a mastectomy.

They actually tried to talk me out of it because they said they're really good at catching cancer early. I thought, well, I don't actually want to catch it. I would rather like nip it in the bud if we can possibly. So I felt like, um, the mastectomy was the right choice for me. Um, and they also pushed implants right at that initial consultation. And I wasn't sure that that was right for me either. And when I told them I was interested in going flat, that set off alarm bells for them as well.

K:

Had you ever met anyone that had had a mastectomy?

L:

Um, so, um, interesting story, when I told my mom about this, she was in her 80s, and my mom is a total caregiver, she likes to help people feel better, uh, but she was, like, had some dementia, and hearing loss, and as I was talking with her, I wasn't sure she really knew what I was saying to her, um, but all of a sudden she got upset It's up and ran outside and started talking with her neighbor who was trimming her shrubs for her.

And she came back in and she said, Suzanne, my neighbor had a double mastectomy and she'd be happy to talk with you. So she didn't know how to me feel better herself, but she knew who to put me in connection with to do that. So she marched me out to the driveway conversation with this woman who I barely knew about mastectomies and she showed me her scars and, and we had a long talk about it and she was the first person I met. in real life that had had a mastectomy. My grandmother, my mother's mother, also had one in her forties, but I was told it was not because of cancer. And I learned from, again, healthcare professionals that back then it was not uncommon for women to have mastectomies for other reasons. Um, so she had a radical bilateral mastectomy and wore prosthetics after that.

K:

When Suzanne showed you her scars, was she flat chested or was she, did she have…?

L:

She was flat chested, but she wore prosthetics.

K:

How did you feel when you saw her scars?

L:

You know, I had been looking around online, so they kind of, I knew a little bit of what to expect and they kind of felt right in line with that. So I wasn't surprised really to see them. It was like confirmation. Maybe it was like, Oh, okay. Yes, this is indeed what this looks like.

K:

And how did you find the flat community for the first time? How long did that take?

L:

Um, it didn't take long. So I first found, um, photos. Of flatties, just on the internet, just random searches um, and then I found not putting on a shirt and actually use their surgeon, um, directory to find a surgeon and, um, and then I think I found the Instagram groups, um, and I was like, wow. Here it is. There's where all the answers are.

Yeah, it was pretty compelling. Because, you know, the, um, the story that we're fed, right, is that, um, women need to have breasts. That women, like, women and breasts go together, right? They're not separatable, if that's a word. But, um, that we can't be whole or healthy or beautiful without them.

And it was those women that I found on, um, Instagram, I told a very, very different story in them. I saw strength and empowerment and beauty and femininity and, um, confidence. And I was like, this is not that trope. This is something very, very different. it was super compelling. And I knew once I saw that, once I found that community, that that going flat was right for me.

K:

Did you find them using hashtags or just, did you stumble upon them accidentally or?

L:

Hashtags.

K:

Mm hmm. And describe for our listeners that haven't experienced this phenomenon. What does it look like? What did you see when you went on to these different accounts and saw photos of women that had gone flat?

L:

I saw an incredible amount of bravery. Um, people that were just sharing their truth with, um, pretense. So it was about showing exactly who they are, showing their bare chests, telling their true stories, um, without doctoring it up to look pretty. It wasn't like the perfect Instagram photo. They were raw and real um, and it was just very, very compelling.

K:

What are some of your favorite accounts that you remember from way back?

L:

Um, so “not in the pink” was one of the first ones—just a fashion icon and what's not to love.

Um, and then, um, I don't, I don't, I'm, I'm really bad at remembering people's handles. So I'm not going to be able to come up with a lot of others. But there were a handful that were sort of, um, very forward, meaning that they were just posting frequently.

So seeing a lot of their, their content and, um, just really really liked what they were saying, um, liked the whole sort of body positivity stance that they were promoting, whether that was intentional or not. Um, it was people that were showing themselves without makeup, like I said, regardless of their size or their shape or else was going on, they were just showing their bodies as they were. And um, there was an honesty there that was just really, really important. Um, moving.

K:

Have you ever met someone from the flat community in person?

L:

Um, so this is actually a good segue into my story… so we have a small group in Vermont, a a small Facebook group, and I had actually met with a Flatty before I had my surgery and it turned out that she was my neighbor's cousin, um, my neighbor's niece. And, um. And I, she was so helpful. We sat and had coffee together in Richmond and, um, she, I, she's like, ask it, ask any question, just whatever you got, throw it at me.

And she was so helpful and, um, really reassuring. And I remember leaving that meeting thinking, holy cow, flat is really flat. Like her chest was so flat. it was startling to me. Um, and then, And then I was like, okay, it's okay. Like it was a little bit of a shock, right? flat, flat was. Then I met some other people from that group.

We try to get together periodically, but we're dispersed throughout all of Vermont. So sometimes it's hard to for us to kind of like, logistically get together, but we've had a couple of, um, you know, get-togethers, maybe a handful of people, but I've like, craved. Wanting to be around other flatties in real life.

Like I've always wanted to have that meeting a “flattie in the wild” experience. that just hasn't happened. And, um, I don't know. It was like last spring I got a from Stand Tall AFC saying, Hey, you should join us for one of our walks. And it struck a chord with me because I was like, I really do like crave this connection with other flatties. I am not a real big, like event person. So like the walk itself didn't really tick any boxes for me. I'm not like some of these big events and retreats, they don't really appeal to me. But, um, but I was really curious about this walk and, and wanting to be around other flatties. So I reached out to this Facebook group in Vermont and. Kind of said, Hey, anybody want to go to Massachusetts three hour car drive for this walk? Um, and I was expecting a no, because we've historically just had hard time gathering people together. somebody was like, yeah, I'll go. So we were off and running. And so me and another woman went down to Massachusetts and did this walk in Lowell, Massachusetts.

And it was super empowering. It was. It's rainy and cold and, you know, we're walking topless for three miles throughout Lowell, Massachusetts. And, um, but, but just beyond all of that, it was just the conversations that we had together and the sort of instant connection that we had with each other that was really beautiful. Um, but it was at the end of that walk where one of them said, you know, I really wish there was a billboard right there in Lowell, Massachusetts, talking about aesthetic plaque closure for breast cancer awareness month. And I think I was just then becoming aware of the work that's needed be done around AFC, around it being offered consistently about it being done well for people. and so that really struck a chord with me when she said that and I thought, well, you know. I don't really have an interest in doing a billboard. We don't have billboards in Vermont. And I kind of like that. And, um, but I'm a designer. So I was like, there's lots of ways that we could create awareness first that apply closure. that's where this whole project started.

K:

Okay, let's get into the project. It's called Still.

L:

It is called still. Yeah.

K:

Tell me about the name.

L:
Yeah. So, I'll give you a little bit of history, um, and how it connects with the studio for us. So, um, we, we do in our studio, what are called “no money fund projects” where we—with other creative colleagues we work with and know and love—usually on a non client based project just for fun. No one gets paid, we get the band together, we do this great project and we create something really beautiful. so my thought was, instead of a billboard, let's do some sort of publication, let's make it a no money fund project. Let's invite my creative colleague friends to see if they would want to be part of it. And um, Yeah, and this publication can be used to create awareness of a stuffed fly closure. That was the idea. There was nothing more to it than that. It's not an especially meaty idea, but it was sticking and kind of nagging at me. And so I put the, put the idea in front of a couple of my friends and I was, again, kind of expecting a no from them. This is a little different from the normal No Money Fund project. It's, It's, you know, it's an advocacy piece. It's a heavier topic. It's personal. I just wasn't sure whether it was going to strike the right chord, but I got an immediate and resounding, let's do it from them. So the next thing was to just, to really start working in fleshing out this project and, and the name was the first part of that. had kicked around a couple other names, which I cannot even remember anymore what they were, but this one just kind of stuck with me. Okay. And, um, it became a working title initially, and then I was like, this, this is it, this is it, because it, that's what this is all about, is showing our truth of how we are still, and, um, in hindsight, five months after the fact, six months after the fact, um, the right name because I cannot tell you how it's resonating with people, both within the breast cancer community and beyond, um, people get, get the idea, get the message.

K:

I love that it's, like when I first saw the word still, I was thinking still photography and then, you know, of course, then you realize as your kind of messaging gets out that you're talking about a different meaning of the word still. It's actually the meaning of remaining, remaining, um, certain things that a woman thinks she might lose when she goes flat.

L:

Yeah, yeah, That's exactly it that we are still ourselves and that's exactly what society and the medical community has told us we won't be right. or that's been the case for for many people. But, yeah, so just stuck and that was that was that so 1 of the 1st things we did, or the 1 of the 1st things that I did to sort of move this project along was to put together a style guide for the photo shoot. to develop the branding for the project and. You know, this is in my wheelhouse, what I do, and I was kicking around different, different ideas and trying out different directions and everything, and the logo that, that is today, um, just was, again, I, I've had this experience with this project where things are just sticking or pestering or poking at me, or just like raising their hand and saying, it's me, it's me, and the logo kind of did the same thing, like that logo, you know. I don't know. It just, it was the right logo for the project.

K:

So tell me how you gathered women the first time you did a photo shoot. I don't know how many photo shoots you've done?

L:

We've only done one and it was, um, it was a little hair raising for me. I'm not a big social media person, but, um, I was working with Christy Raymond at Humankind Casting. And she's STILL’s executive producer and she's got a lot of casting experience. And I was kind of thinking she would just kind of take the reins and go with it. But, um, I had this connection to the community and she's like, you know, really, we should be doing this through your social media. So I was like, okay, here we go. And I was looking for six to twelve flatties for the project. Six was my minimum for getting it off the ground. Eight to twelve was kind of the sweet spot where I felt I could get the diversity that I was looking for. when I thought about this publication. In the hands of a person who's making reconstruction deci decisions in that exam room with their, with their surgeon or physician, want them to see something that they can identify with. So I wanna show women of all ages, sizes, and colors. So as they're flipping through this, they're not seeing what anesthetic closure looks like, but what it looks like on a lot of different people. And, um, so that again, they can identify it with it. And when I think about like the hope that this project can provide. It lies there because when you, you know, when you're going through something difficult like that and you're on, uh, you're feeling pressured to make decisions, there might be a timeline that's factoring into it, it's big and scary, um, finding that one thread of hope that you can grasp onto can mean the world, right? So eight to 12 was kind of where we were going. And again, we just did the casting through Instagram and Facebook.

We ended up getting, I'll add that it was, um, we were shooting in Worcester, Massachusetts. We had this gorgeous studio that gave their space to us for the shoot. And so I was expecting a local response because again, it's a no money fund project, so people would have to be able to get to the studio and to the shoot on their own means. And, um, So I was expecting local and I'm like, I don't know how many flatties there are near Worcester, Massachusetts. Like, what's this gonna, how's this gonna work? We got an international response. We

K:

Oh my goodness.

L:

All over the country, all corners of the country, and as far away as Europe that submitted casting submissions for this project.

K:

Wow. I recognized Farhana from Texas and I saw Linda from Massachusetts, so I didn't know how far it went, but that's crazy.

L:

It is crazy. We have, um, we have someone from San Francisco. We have two from Texas. We have Florida, Michigan, Illinois, Pennsylvania, uh, Massachusetts, Connecticut, and Vermont. Yeah.

K:

Was it a one day shoot then, or?

L:

A one day shoot and shooting 12 people in one day is a big, a big task, getting them through wardrobe and hair and makeup, having their photo sessions. And then the other piece of that day was that we actually interviewed them. So, um, they were interviewed after their photo sessions and those interviews became the foundation for the text for the book.

K:

Mm hmm. Is it a text heavy book?

L:

It is not. So, um, a photo heavy book. The, so the photos are. I can't wait for photo for people to see these photos. photographer is an internationally published fashion photographer, and his eye, his vision is just incredible. We're, I was just so thrilled that he said yes to doing this project. And so when we were casting, we had asked people, what, what are your top three still phrases? How, what are your top How are you still yourself? And so everybody has their still phrase. And then what we did was we had them work with our wardrobe stylist who put together looks that exemplified those phrases. then when they got on set, we actually had a huge piece of Plexi with the still logo printed on it. And then we had people actually paint their words on the Plexi, um, to complete their still phrases. And then, uh, so we had, know, we had these people who, who had their, um, The sprays that really resonated with them, right? They're painting it. They're wearing a look that complements that and then we're taking pictures that just really pull all of that out. So when you, for example, um, we have a flatty Emily from San Francisco who is still fierce and if you can just take a glance at that photo and get fierce from it, like those messages just come through so beautifully in the photos. So the text is, really You know, you marry a compelling story with a compelling photo, and then you've got a sort of a powerhouse of a, of a communication happening, right? Um, and these stories, so we ended up doing two, two publications. Um, it, when we saw the stories and the photos, we realized this needed to be more than just this little booklet that I was envisioning. we did, we designed a 132 page art book, basically. Um, called the still anthology that shares more of their story and in their own voices. So it's not heavily edited. It's very much their own voice, um, and it shares the good bad and the beautiful and they're very real. and then in the compendium, which is the smaller booklet, that's a 36 page booklet.

That's the book that's for healthcare providers. that book is, um, even lighter text. So we've, um, really focused that text to be about like what influenced people's decisions to go flat, what that transition was like for them, what challenges they had around going flat and what, what life is like for them as a flattie. so, um, so it's more of a synopsis in that piece.

K:

Okay. Are you planning to sell the anthology as a way to raise money to print the booklets? Yes.

L:

We are so, um, yeah, so this will all be launched on January 6th. We have a store that's going up on the still website. We'll be selling the anthology and the compendium and digital downloads for the compendium. And, um, what we're doing for healthcare providers is we're offering the compendium, um, at no cost for the digital download and printed, um, copies at cost.

So, um, if they wanted to buy, you know, a stable of, of compendiums to hand out to their, um, patients, we can get those copies to them. at a discount. Um, yeah, yeah. And the, and because this is, this project isn't, isn't about making money, the any proceeds that we make from selling these books is really just to cover our out of pocket expenses.

K:

Cool. And it's a black and white project. So that makes it easy to print out in black and white.

L:

Well, the photos are black and white, but the book is not black and white.

K:

So when you give a physician a digital download, do you picture them printing it in their office?

L:

So what I wanted to do was really just make this as accessible as possible and remove as many barriers as possible for people to actually use this. um, the reason why we're providing a digital download is because we can just give it to people, right? And they can spread it however they want and they can either share a QR code or, um, to their patients for them to download it themselves.

They might want to have a handful of copies that they just have in the office for people to look through there. they can, they can manage it any way they want to depending on how their practice works. Um, so really, like I said, just trying to remove as many barriers and make it accessible to them to be able to get to it and actually use it and share it.

K:

And then the big question, how much energy and what kind of strategy do you have around getting physicians to actually use this tool?

L:

So, you know, that was the big question. I was like, I am a designer. I don't really know how to do it. Like, this project has been, like, has pushed me out of my comfort zone so many times, like, over and over and over again. And, um, You know, the pathway is just opening up. So, like, if I'm patient and ask the right questions and all of that, I'm getting the answers that I need to move forward. with distribution, you know, I was thinking it was going to be largely grassroots, like, we would get this into the hands of the flatties that I'm connected with through through social media and ask them to take this to their physicians and start spreading the word that way. That was about as far as I got with it.

Um, and that's happening. I already have people like saying, Hey, can you, me know when this is ready. I'm going to take it to my doctor. Like people are lining up to do that. I have physicians that are hearing about this, that are saying that, yes, I want this in my office, let me know when it's ready. And then, um, can I share some top secret news?

K:

Yeah, please.

L:

So, uh, we have been invited by the ASBRS, the American Society of Breast Surgeons, to exhibit at their annual conference in Las Vegas in the spring. So this is going to put this book in front of 1, 700 breast surgeons.

K:

Wow. Are the ladies in the book going to be there?

L:

Well, we've got all kinds of things in the works for this, for this event, and none of them have been formulated yet, but I wouldn't, I wouldn't be surprised if some of them came. Yeah.

K:

I would. Yeah, that's so exciting. Oh, I just want to say right now, thank you. That is, I mean, it's one thing to have a beautiful book full of photos as a flatty post surgery, but to imagine The possibility that I could have had that book in my hands pre surgery... It is such a gift. It is so important and so rare and it takes a lot of forethought and those professional skills that you've gathered, those professional people that you've gathered in order to carry that off well. So thank you so much for that.

L:

My pleasure. This has been a real joy to work on because, obviously, that personal connection, right? Have I found out about AFC on my own. I cannot tell you how many people have come up to me and said, I had to find this on myself, it shouldn't be this hard, or I was talked out of this, or I was told. two weeks ago, someone told me that, um, they're, they were interested in going flat, and their surgeon said no because, um, studies show that the outcome for women is better if they have reconstruction. Meaning implants or flap surgeries. And you know, that's, that's part of the problem. That's part of the problem, right?

So I've been talking a lot with, um, Kim Bowles, not putting on a shirt and she's showed me studies and everything. And there are actually studies that conclude that it's psychologically harmful for a woman not to have breasts. There are other studies that disprove that but that thinking persists, right?

And obviously I kept, when, when that woman told me that, I was like, okay. That's a surgeon who's still thinking about that old study, or still stuck in thinking about that old trope that we're fighting against. Um, because the truth is different. Um, what we've experienced is different. And that's not to say it's this way for everybody. I know that there are women that go flat and then decide to, um, get implants later, or do flap surgeries later. There's no one right way, and I'm not pushing aesthetic block closure as the thing to do. But what I'm pushing is It's being given the option. So even if somebody gets this book and they look at this and they see these beautiful photos and they read these compelling stories they decide that flat is not for them, that's great because even then we have helped them see all the options and make an informed choice.

The STILL statements that the models have made really apply to most women who have had mastectomies. They have the same kind of insecurities, regardless about whether they are going to still be in a certain way or fully feminine and all the ways that they see themselves before surgery.

K:

So I think the message is still really powerful. It's a little bit more stark, maybe, um, being that the women, the models are breastless, but the messaging is very poignant and meaningful, I think, for all of us.

L:

Right. And that's what I mean, like this is resonating with people outside the breast cancer community because anybody who has been through a significant challenge like breast cancer or these big surgeries. Right. There is that concern, like how, what's my life going to be like afterwards? So what am I going to look like?

Am I still going to be me? And so that, that, that thought that you are still, um, after going through hard things is incredibly empowering.

K:

Definitely. Yeah. I feel like I've been tabling this last October, September, October for a stand tall AFC. And for the first time, I've been engaging with women who have implants, but had never even contemplated going flat and weren't given that option. And I would say a good number of them are perplexed by The idea of going flat, um, and then there's also a great number that I'm surprised each time that have implants and are very unhappy with them, not just because they're sick, like typical kind of breast implant illness kind of symptoms, but they just don't feel themselves anymore.

And they're desperately looking for an excuse to solve that problem. And I never imagined, I mean, I had so many reasons to go flat. And I had so many physicians telling me I, I should just get implants, but I, I'd never entertained the idea of implants. I always knew I was going to go flat myself, but I thought I would feel disfigured afterward.

And to be able to tell these women that going flat and feeling themselves will not also include that necessarily that stigma or that belief that you are not whole or you're disfigured I just love being able to share that message with all my heart, you know, it's just, it's such a big truth. Um, I think it's, it's not a natural truth. You wouldn't naturally assume it if you were sitting alone without exposure to other women that have gone through it, but it's so important.

L:

You’re making me feel like, so anxious to get this book out here because these, these, these exact things that you're talking about are spoken about in this book, like this idea of like, like one, one young woman. So I have like, an incredible age range. So our youngest in the book is 31 and our oldest is 70 and, you know, it's different.

Like, I went through this in my late fifties. I had already had my kids. They were out of the nest. Um, So my considerations were very different than somebody who's in their 30s who might be a family, right? And, um, so anyways, like, we have a young woman who was planning a family and, um, she was very, she's very athletic and she, she says, I thought I was going to be like a Frankenstein. Um, so the people, exact, are actually really beautifully voiced in this, in this book about implants, about how am I going to look, am I going to hate myself, am I going to, am I ever going to adjust to this, and how do I adjust to this, and all of that is captured in these 12 stories.

K:

How did you pick the women? I imagine you had a lot to pick from.

L:

We did. So, um, so again, I was diversity that I was looking for. So I was looking for that, that really lovely cross section. The one thing that we did not do that. If we do this again, I should say, when we do this again um, I didn't really ask for their stories about, you know, how they got to be, to be flatties. So I had asked whether they were survivors or previvors. I'm trying to remember what else I asked them, but, but we didn't ask for any specifics about their, their journey in that respect. So when we got to the interviews and, um, and afterwards we were reading them, I was like, wow, these are all like, everybody's got a different takeaway.

Like it's really amazing. And actually, my daughter, my youngest daughter, Nora, she's, she's, she's led the interviews and is doing the copywriting for the book. And, um, she, she said, boy, mom, you and Christie did a like really amazing job, like casting these 12 people. They're so different. Like divine intervention right there.

Like, I don't know, even know how that happened because, um, it was really, truly luck of the draw from that perspective. But we were looking at things from an aesthetic standpoint. Like I wanted people with different hair, like I didn't want all blonde people. I want it like to be different hair colors and different haircuts and different body sizes and types and different, even different scar types.

Like, you know, some different scars heal differently on different people. So we wanted to show like, what does the. Thin line, you know, incision scar look like versus a keloid scar. Um, so wanting to be able to show those differences as well. So we were looking at more of those sort of differences. visual nuances when we were selecting than we were story.

K:

But it came out that the stories were diverse, too.

Not only were they diverse, so they, they, their commonalities for sure between them, you know, several of them, but their takeaways are all really unique and really compelling.

K:

So you said you're maybe going to do this again. What is that going to look like?

L:

Uh, well that's, that's to be determined, but like it just has become clear to me that this is not a one and done project. Um, so the, I have. I've been getting a lot of feedback from people in the breast cancer and flat community about the project. you know, comments about things that I've posted or messages that people have sent me. And it has been 100 percent positive. for one. So 99. 9 percent positive. person told me that they were frustrated that they couldn't get to the photo shoot because they were, they were, um, they had some health concerns and they had some financial limitations that prevented them from being able to come to the shoot. And so it was an accessibility issue and, um, they said, you know, my story is, deserves to be told. The truth of the matter is we cannot tell every story. There's no way we can, we could do that, which is again, by that diversity is, is important, is but, um, but we've only told 12 stories and. I think there's, there's more to share out there. So I'm, I'm seeing this as volume one, what we're working on right now, and volume two will come down the road. And I'm not sure what that's going to look like. we've talked about the idea of maybe even getting surgeons involved in the project to, to actually show, show a surgeon and a patient. I, I don't know how we get around HIPAA and all of that, but like, we'll figure that out. like to, because one of the things that I heard, um, Is that surgeons don't see this. They do their surgeries and they move on and they don't see what life is like for people afterwards. Um, they, they know what the studies say.

They know, um, tidbits that they hear from people, but for them to actually, like when I was talking to ASBRS about this project, you know, they were like, we don't see this. This is really interesting for us, us to see. And wouldn't it be interesting for the surgeons to be telling their side of the story as well. Um, so, so I thought, I thought that's interesting. So we're gonna put that in our back pocket for now because I don't have the bandwidth to take that on. But like, so something like that, but but it could also just be a very different to the book from a visual standpoint. It could be. focus, we could broaden it to include other reconstruction. I'm not sure. I'm open to anything right now, but right now it's a flat advocacy piece and a flat advocacy project. So whatever we do is going to stay rooted in that. We'll just have to see what path opens up for a volume two when we get there.

K:

Do you have a dream of making any of the STILL shots, uh, a billboard? You were talking about billboards….

L:

Not a billboard, but we are doing a poster show—a traveling poster exhibit. So there will be 12 international size posters, which is about 36 by 50 inches of each of the flatties and there's going to be a video companion piece that goes with that and we're going to be working to get that into galleries and museums around the United States.

So, so that's going to be If you think of it in two parts, like, or if you think of like the mission of STILL, creating awareness of aesthetic flat closure and promoting body positivity and flat visibility, um, the books do do all of that, but I think the posters do it from a completely different perspective and are gonna hit a completely different range of audience. Um, and that's where I feel like that, that normalizing flat and the body positivity and the flat visibility, those pieces are really gonna be You know, accessed through this poster show.

K:

And what kinds of galleries and museums are you targeting for that?

L:

I again, I'm, I'm open to whatever, whatever. We're just going to, we're going to start, I think, focusing on New York and Boston just because we're too busy. East Coast right now and see where we can get it from there. so I'm very much focused on getting the books released on January 6th right now, and then once that's, those are out and about then I can, um, shift more, more of my energy towards getting these posters exhibited.

K:

Great. Yeah. Hopefully listeners will have connections for galleries and museums that they can turn you on to. That would be great. Are the posters pretty durable? Are they like vinyl or cloth or what are they made of?

L:

I think I'm going to print them on canvas. I still need to do some research about what's going to be best. I'm thinking about like what's going to travel best, what's going to pack best, all those sort of nuances about putting a show like this together. So there's a lot of logistics and little details to take care of that on the sort of functional side of things that are beyond the, um, you know, what does this look like and what did these posters actually communicate and say to people?

K:

That's great that you have all the participants from so far and wide, too, because they can do a little bit of promotion locally for their own communities, too.

L:

Yeah. Yeah. And we have a, we have a PR person on our creative team, so she's, she can help with that as well. And yeah, we're just going to work our networks and see what we can dig up.

K:

So fun! That's great! Wow. Well, I wanted to ask you a little bit more about your personal story. We talked about the fact that you have two daughters. I don’t know if they're grown daughters or teen daughters, but tell me a little bit about how you worked through with them whether or not to get tested for the BRCA2 mutation.

L:

When I first found out, you know, they flood you with information about what to share. I got a packet from my genetic counselor that had all the information and all the results and multiple copies of it that I could just parse out and, and send to family members and everything, which we did. And um, so I have a son and two daughters and we let them all know that, that this is a thing in our family and that they can get tested if they want to. And um, And, um, my older daughter, she's 28, she just, she did, she got tested right away because she was at that age where if she was positive, she would have started, um, screening at that age, and she thankfully was, was negative, so that's great.

My youngest daughter is 24 and she is waiting until next year to test because again that's when she would start screening if she's positive but, um, and then my son is holding because for him, he would, you know, the big, the biggest concern with him is prostate cancer and protocol right now is that they would start screening for that when he's 40 and he's just turned 31. He'll be 31 this week. So he's, he's on hold right now. Plus he was like going through a move and a big job change at the time. So it just wasn't the right time for him. But, so two kids have not tested yet. One has, and I've just been really open about my, my own, um, thinking about all of this and why I've made the decisions that I've made and understanding that they are going to make their own decisions and that's fine. But lets just share the information, right, and be very open about it and so that they can feel comfortable asking questions or, I don't know, just, there's no need to be closed about this. Let's just share what we know and share what our experiences are and, and then support each other through whatever decisions we, we choose to make individually. But my daughters, you know, they saw me go through this mastectomy and my youngest actually came—none of the kids live in Vermont anymore, so one's in New York City, one's in Boston, and my son's out in Seattle. When I had my mastectomy, my daughter who lives in Boston, my youngest, came to visit me and everything, so she saw, she saw what you go through after mastectomy and, and all of that, and you know, and she's, she's told me, you know, if I brought a positive, I'm probably going to do the same thing that you did, so, like, for me, it's about being a role model for my kids, and, and that's, and being a role model is not about making it all look easeful and pretty, it's about showing how it really is, and being honest about it, and being vulnerable. And so that's what I've been trying to do, do with them. And so when they said, when I told them about STILL, this project and this photo shoot, they were like, “we want to be there.” And I was like, great, I'm putting you to work because like, again, this is a big task to get 12 people through this process in one day. You know, there are a lot of places where things could get tripped up. And so having extra hands just made sense. Nora is, uh, she had just graduated from Mount Holyoke college with an English degree. She was the perfect person to do these interviews and do this writing. Hannah is, um, she manages a restaurant in Times Square and she's got a hospitality background. So she, that's what she did. She kind of was our hospitality director and just made sure that all the flatties felt comfortable and safe on set.

I realized that I was bringing in 12 people, well 11, and myself, who had been through some pretty traumatic things and I wanted, I realized that the very photo shoot itself could bring up big feelings and so I wanted to make sure everyone felt safe on set and comfortable on set. We put together this community agreement that outlined like, should something not go well, like should something be said that feels harmful to you, or should, should something make you feel uncomfortable, this is how we're going to approach it, and this is what we're not going to tolerate, and this is how we're going to do things, so it was all kind of spelled out ahead of time. That community agreement was included in our photo release that we sent out and had everybody sign, cast and crew signed it. So everybody was on the same page. So Hannah was really there just to make sure, like, people were okay and felt good and work were doing well. And, um, and then she ended up sort of doing double duty and doing some photo assistant work while on set too, because it was, it was a very busy, bustling day.

K:

Has your daughter dealt well with the kind of anticipation of waiting a year and wondering What the future will look like?

L:

I think so. You know, I think for her, um, it just she has clarity about what she would do if she was positive. And, um, so I think she has, I don't, I don't sense that there's fear there. I'm sure she'll be happy to know and just know one way or the other. Um, but she, but I don't, I'm not sensing any sense of, uh, and in the way at this point.

K:

Luckily it's something you can get paid for pretty easily now, so,

L:

Yep. Yep. So that's all good. I think I think we're okay there for the time being. We'll just take it as it comes. Right? That's the best we can do, it was good to have them at the shoot and not only that they see, I mean they know my story,

After my surgery, when I was first able to take off those bandages, the drains are out, you're finally feeling human again. um, I remember thinking that I was really going to want to wear prosthetics. And so I was really eager to get my prescription to go to the place and get my real prosthetic. Athleta sells these really nice, it has a really nice, um, mastectomy bra and really inexpensive inserts. So I bought a set of A cups through D cups to just explore and see what I would want to wear.

And so I remember after my surgery, my daughters were visiting and we were trying on all these foobs. Like, it was, it was just so fascinating to me that how, like, not me they were, they were just, um, they felt awkward. I was like, I didn't like, do I have them in the right place? Like, is it supposed to be up higher or further? Like I can't tell, this doesn't look right. um, so we ended up wearing them as shoulder pads and butt pads and we're just like playing with them and stuff. But like, and we never, I've never, ever worn them. I'll donate them to somebody, but like, um, just became really apparent that I'm flat now.

That's who I am. And, and I don't need to put things in my shirt to do that. That felt almost dishonest to me. Like I'm not being myself. I'm not being true to who I am by wearing prosthetics. That's me. Everybody has their own feelings about that. But, um, but that's where I was. But boy, did we have fun playing with them.

K:

Aww, I love that. Yeah, I feel exactly the same. Even as a uni, I had, for nine months, I had a single double D breast. And I always just longed to be free of that prosthetic. Um, I did get used to using it, but I never felt good in it. And I felt so much better when I had my second mastectomy. And I did have those, those, those Athleta inserts I never wore. I got A's and D's because I thought D's would be matching my natural size. Never wore any of them out of the house. It was just so not okay with me.

L:

Yeah. It's, it was startling to me because I was so sure that's what I was going to want. And it really just, it didn't resonate at all with me after the fact. So, um,

K:

Well, we're getting low on time, but I want to ask you one more thing. You mentioned the dynamic of having all 12 of those women in the photo shoot. And I, I regularly volunteer with Daniel Rogers here in Oregon that does photo shoots with survivors and mainly flatties. And she intentionally has women come together two and three women at a time for a photo shoot because she believes that the power of
that experience as a shared experience is really, um, healing in itself. Like it's, it makes the photos more beautiful and joyful. So do you have any magical moments to share about the dynamic that was created that day?

L:

Oh boy, let me tell you. Um. That day rendered me speechless for weeks afterwards, um, literally could not form words or sentences to describe what happened on that set. So the night before the shoot, um, we loaded into the studio, we got the set put together, we did some test shots, things like that. then we did a meet and greet, we had the Flatties come that evening.

Not everybody could come, but most of them did. And it was the first time that we had been together. Many of these people I hadn't known on social media, but never had met in person. And, um, and some of them I hadn't known at all. And the moment they set foot in that studio, I knew them. It's like we knew each other.

We were connected. We were bonded. We were family of the best kind. And it was not like anything I've ever experienced before. It was profound. Um, it was it, and it, and it wasn't just the flatties, like the whole crew felt it too. Like it was just, that studio just with love and compassion and joy. so that shoot was not about trauma or loss at all. It was about joy and positivity and love. Um, you know, it was a long day. We were, we were shooting for You know, close to 12 hours maybe. And, um, there's a lot of downtime and they could have just been sitting around or they could have left or come back or, know, whatever.

But basically there was just this little huddle of flatties that stood at the opening of the set that were just cheering on whoever was having their session at the time. it was loud and it was joyful. And it was just, I don't know, I, I've not experienced anything like it. And I, and I imagine this is what people feel. People experience when they do go to these retreats and other camps and events and I had not experienced that before. Like I said, I'm not kidding. I was rendered speechless. I was, I was a mess. I cried for three weeks afterwards!

And, and, um, to put it in a little bit of perspective, My, my executive producer and photographer have been in this industry for 35 years, and they've worked with really incredible clients over those years. And they said at the end of the shoot that this was the best shoot for their careers. That says something.

That's, that tells you how impactful that day was. So the shoot, which was just meant to be a means to an end, to get these images and stories, to create these publications, shoot itself became a thing.

K:

Powerful. Yeah. I imagine that just having Lynda there, she's been to so many flat gatherings in person and experienced so much love and given so much love and that kind of experience just travels with you and it just continues to be imparted, you know, wherever you go, I think. And that's the wonderful thing about the flat community. It's, it's such a safe and affirming place to be. And it's so important to see each other in person for that reason. Wow.

L:

Yeah. Someone had their first flat hug with another flattie. Um, someone took their shirt off in front of other people for the first time. Um, one person left and said they threw out their prosthetics because they felt so loved and so confident after going through that experience that it changed their mind about wearing prosthetics. So it was profound. I don't have another word for it. It was just, it was life changing. It was beautiful.

K:

Oh, I love it. I'm so glad you did that. It's it's great to hear about all of the photography, um, experiments and projects that are happening all over for all kinds of breast cancer survivors and just how healing they are.

L:

Yeah. And what I love about, about these is that, I mean, obviously there are a lot of beautiful professional photos out there of flatties. Um, I feel like these strike a different chord there. Um, I think they're going to feel fresh to people. I hope they will. I think they will. They're very, they're very stunning and compelling.

Um, don't know something about the black and white. That's really striking. Um, I'll be curious to see what you're going to think when you see it.

K:

Yeah, well, share, share all the information with us. Tell us your handles. And then also, most importantly, how can we get a book

L:

Yeah. So the best place to follow this project is on Instagram at project still me. so I'm at, so this is flat and I started. of started talking about the project there and it's become such a thing it grew up and got its own Instagram. So project still me is, um, the Instagram handle. And then, um, the website is project hyphen still dot me. um, we're going to be launching a store on the site on January 6th and the books in all their versions. So the printed versions of the anthology and both the print and the digital downloads of the compendium will be available on the, on the website on January 6th.

K:

Do you know how much the compendiums will cost?

L:

The anthology is $40. The compendium is $15. (Corrected post interview!)

K:

Well, we'll be lining up and getting some for each of our booths at the Sand Hall walks.

L:

Yeah. That's the other thing we're trying. We're, we're, we've got a couple of organizations that are going to promote or offer links to this work through their sites and things like that too. So, where I think it's going to be a many, many hands make light work situation where we'll just tackle this from all kinds of angles and get this into the hands of the people that can make a difference.

K:

What are the names of those organizations?

L:

Well, not putting on a shirt is one of them. So Kim's been a super ally, great friend. She's just been so amazing and, um, and sharing information with me. And, um, and so they're going to be putting this on, on their website as well, and we'll see where else there's another, there's a magazine in Texas that is interested in 50 top cancer centers that they send their magazine to quarterly. we're looking for opportunities like that. And just, um, You know, just different, different ways and angles to get this into the hands of people are consulting with, um, women about reconstruction options.

K:

Thanks again, Lisa. This is such a great gift and I can't wait to hear what comes next for you in this area.

L:

Thank you. Thanks for the opportunity to share about it.

I'm jumping in here with a quick holiday tip in between seasons. I highly recommend "After Breast Cancer Diagnosis" if you're in need of a mentor... or if you're feeling ready to offer a mentoring ear to a newer patient. Find them at https://abcdbreastcancersupport.org .

Transcript:

I'm checking in today in between seasons because it is the holidays, and the holidays can be a pretty stressful time of year on a normal year, and this being an election year, it's extra stressful for some of us. And I wanted to share a resource. I am not affiliated with this resource except for the fact that I found my mentor through them.

If you're struggling and you need a breast cancer mentor, encouragement around your breast cancer story and just someone to talk to one-on-one, I recommend going to an organization called After Breast Cancer Diagnosis. Their website is https://abcdbreastcancersupport.org. And that's where I found my mentor.

They are incredibly responsive and very personalized in their approach to matching breast cancer patients with mentors. And at the time a couple of years ago when I went to them for help, they got me matched up with someone just like what I asked for right away, someone with my same diagnosis and someone with my same interests and advocacy.

And so if you're really struggling, ah especially around triggers with regard to your breast cancer trauma, I just wanted to recommend this if you need it.

I will be back in January with season two, and I have some great guests lined up for that season. And I hope you have a wonderful holiday season in the meantime. I'll talk to you soon.

Last week's interview with my fellow advocate Leslie brought up a few things that make Metastatic Breast Cancer Unique. In today's episode I'll reflect on things like "lines of treatment," "progression" and "dormancy" when it comes to mets and I'll also talk about some of the ways that science is progressing for metastatic Lobular Breast Cancer patients. 

Don't forget to rate and review the show and if you want to enter for a prize for doing so, email a screenshot of your review to me at kathleenmoss@protonmail.com

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This episode has not been transcripted.