Sarcoma Sisters – Détails, épisodes et analyse

SARC (Sarcoma Alliance for Research through Collaboration) is a non-profit organization dedicated to the development and support of research for the prevention, treatment, and cure of sarcomas – a cancer of the bone and connective tissue of the body.

Dr. Kopp and Dr. Allen-Rhoades join Dr. Scott Okuno, SARCs Chief Medical Officer, for a conversation about the history of the Sarcoma Sisters and how they are hoping to help patients and loved ones navigate their sarcoma diagnosis through their podcast.

Dr. George is a medical oncologist and Associate Professor at Harvard Medical School. She is the Clinical Director at the Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Institute with over 20 years experience of treating patients throughout the world with sarcoma. She is actively involved in the clinical research and works to develop new clinical trials focusing on therapy for metastatic soft tissue sarcoma.

In this episode we discuss:

• What led her into medicine, and what led her into taking care of patients with sarcoma - it included one of the first targeted therapies for a sarcoma subtype, GIST (Gastrointestinal Solid Tumor)
• What is Leiomyosarcoma including how is it treated, and challenges to the current treatment paradigm
• What is the Count Me In (CMI) Leiomyosarcoma (LMS) Project
• What the hope is to learn from CMI LMS
• How the CMI LMS project helps current and future people living with LMS
• What does Dr. George see as the next big thing for treating LMS  
• Here is the Link to the Count Me In Leiomyosarcoma Project

music: Rosepigg

photo:  nine koepfer 

Dr. Allen-Rhoades and Dr. Kopp discuss the topic of second opinions for your sarcoma. 

Discussing common questions and concerns of second opinions:

• Tips on deciding if you need/want one
• Types 
• Issues with too many
• Unnecessary concerns - you're not cheating on your oncologist
• why it is important to discuss with your oncologist
• Tips to getting the most out of it
• How the pandemic has made them more accessible 

music: Rospigg

photo: Markus Winkler

We talk with Dr. Safia Ahmed a radiation oncologist who specializes in caring for adults and children with sarcoma - she works with our sister Wendy at the Mayo Clinic!

Dr. Ahmed is a Senior Associate Consultant in the Department of Radiation Oncology at the Mayo Clinic in Rochester, Minnesota. And she is an Assistant Professor of Radiation Oncology - Mayo Clinic College of Medicine and Science.

She has giving numerous lectures and research presentations on a variety of radiation and sarcoma topics including late effects.

In this episode Dr. Ahmed breaks down all things in radiation! How does it work? What are the different types of radiation and how do they compare? What are the side effects are radiation? What is the maximum dose of radiation? And so much more!!

  music: Rospigg photo: NCI

Dr. Fitzhugh is an associate professor and interim chair of the Department of Pathology, Immunology and Laboratory Medicine at Rutgers New Jersey Medical School and the Department of Pathology and Laboratory Medicine at Rutgers Robert Wood Johnson Medical School. She is an expert in the pathology of sarcomas. Dr. Fitzhugh also has interests in the recruitment, retention, and promotion of Black and other underrepresented groups in medicine to pathology as well as racial disparities in treating patients. Dr. Fitzhugh is a celebrity pathologist and has >21,000 followers on Twitter - find her at @DrFNA. And check out her article: Through My Eyes: The experience of a Black woman in pathology

In this episode we talk about all things sarcoma pathology and also Dr. Fitzhugh's unique experience as a Black woman pathologist and her platform #blacklivesmatter   We discuss: 5:30 what does a pathologist do?   12:30 why pathology diagnosis takes time and the steps pathologists take to determine sarcoma type   14:00 why second opinions are needed   16:30 The variety of sarcoma tumors    18:00 why it is so important to get the diagnosis right    19:00 pathologists have big hearts   22:18 : breaking down IHC/working up a tumor   25:30 growing and karyotyping tumors and genomics   30:00 FISH breakdown   33:15 why is tissue an issue?   34:45  Sarcoma is a team sport and including families    38:15 how is pathology changing with new technology    43:00 Dr. Fitzhugh platform - women of color in medicine    44:00 Convincing minority children pathology is where they want to be - letting future generations know the role of a pathologist   46:30 meaningful impact of having black role models in pathology    49:45 Dr. Fitzhugh finding her voice   50:25 Trolls on Twitter and assigning value to black people   54:00 Bubba Watson update   music: Rospigg photo: CDC

We talk with our sarcoma brother and world-renowned sarcoma genomics scientist and pediatric oncologist Dr. Brian Crompton.

Dr. Crompton is an Assistant Professor at Harvard Medical School and an Attending Physician of Pediatric Hematology/Oncology at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. He is the Principle Investigator of the Crompton Lab where he and his team are harnessing novel genomic and proteomic approaches to improve patient outcomes in pediatric solid tumors. They leverage innovative technologies to determine prognostic biomarkers and validate druggable targets in Ewing's Sarcoma and Osteosarcoma.

In this episode Dr. Crompton breaks down the current state of genomics and personalized medicine and the future for us. We talk about all the things: genomics, liquid biopsies, ct-DNA, etc.

To read more about Dr. Crompton's laboratory and/or donate to his amazing research click here.

We talk with Dr. Andrea Hayes-Jordan a world renowned pediatric sarcoma surgeon and a professor of pediatric surgery and surgical oncology at the University of North Carolina Children's Hospital.  

Dr. Hayes-Jordan is the Surgeon-in-Chief of the UNC Children's hospital and the division chief of pediatric surgery at UNC.

If you want to know how a world class surgeon thinks this is the episode - take this episode in - Dr. Hayes-Jordan is amazing!

Learn:

9:20 - How she prepares when she has a new patient - specific considerations when talking with her patient and their families

15:15 - Explaining positive margins

36:40 - How she knows what a tumor looks like when operating

45:00 - Prepping physically and mentally for 12+ hour surgeries 

51:20 - The 3 most important questions you should ask the surgeon removing your or your child's tumor

watch the podcast video: Episode 7 - Dr. Hayes-Jordan 

Music: Rospigg

We talk to the amazing Dr. Corrie Painter  Dr. Painter is the Associate Director of Operations and Scientific Outreach for the Broad Cancer Program and the Associate Director of Count Me In. Corrie shares with us her own Angiosarcoma story and how her diagnosis ultimately led her to her current position at the Broad Institute where she is leading the charge on the Count Me In patient driven projects that are pioneering how cancer research is done and making impacts on finding cures in rare and metastatic cancers.   The Count Me In projects include the following cancer types:

• Metastatic Breast
• Angiosarcoma
• Metastatic Prostate 
• Stomach and Esophageal 
• Brain Cancer - any type 
• Osteosarcoma 
• All tumors types

Open to all people in the US and Canada. If you or someone you know is interested in joining click this link: Count Me In       Breakdown of specific topics:  5:00 - description of Angiosarcoma  6:00 - length of time to Corrie's diagnosis with sarcoma  7:30 - sarcoma treatment  12:00 - journey of Corrie's cancer treatment:Yellow brick road laid out in front of you on your way to Oz - With Angiosarcoma - We didn't even have bricks - we didn't even know what bricks were 15:30 - connecting to work together to build that road 22:30 -  Broad Institute and Count Me In: beginning with metastatic breast cancer 28:00 - Building and some results from the Angiosarcoma Count Me In project  38:00 - what is count me in - how does it work to take part? 40:00 - key is building with patients involved 50:00 - the power of people giving their history directly to scientists for research 52:00 - the closure/space available for loves ones 54:00 - the power of loved ones - making a difference in angio sarcoma 57:00 angiosarcoma turtle mascot - slow and study - we will get there and win the race  

Music: Rospigg

Artwork: Randall Ruiz

Lisa is joined by Donna Bell in episode 5: Fertility 101.

Donna Bell is a Nurse Practitioner at MD Anderson Cancer Center and an expert in onco-fertility. She cares for pediatric, adolescent and young adult patients in the pediatric leukemia/lymphoma division and she helped to start and leads the onco-fertility consultation service.  

We dive deeper into the meaning of the fertility terminology used and:

• Why the initial conversation matters
• Burden parents of patients with sarcoma carry
• Information overload and squeezing in the fertility conversation
• All you need is one good man – this is true for marines and sperm
• Why yearly fertility follow up is so important

And so much more!!!

We are joined by Dr. Abha Gupta in episode 4: Sarcoma and Fertility.

Dr. Gupta is a sarcoma and onco-fertility expert.

We discuss female and male fertility and:

• Do you even want to be a parent? And if yes – is it important if your future baby is related to you?
• What's the rush – why fertility question needs to be asked when someone is first diagnosed with cancer and is there a rush?
• Balloons/marbles = ovaries/eggs
• Push and pull of AYAs (adolescents and young adults) and their parents
• Changing your mind – loss and regret  

And so much more!

Music: Rospigg

Artwork: Tucker Good