Sarcoma Sisters

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

Hanneke and Jim share with us their families' sarcoma story beginning when their daughter was diagnosed with Osteosarcoma at 7 years old.

This episode is relatable to all people and families with sarcoma, including advice for what to tell well intentioned people who give unsolicited advice:

"Just stand in my puddle with me. That's all I need right now. It's raining everywhere. Don't try to give me an umbrella, don't try to give me rain boots, just stand with me where I am"

Music: Rospigg

Artwork: Nick Nice

In this short episode we continue the conversation with Hanneke and Jim. They share with us their experience in survivorship land with their daughter who completed therapy for Osteosarcoma 4 years ago.

Music: Rospigg

Artwork: Jonathan Borba