Understanding GIST & Desmoid Tumors

During this virtual presentation, Dr. Trent and Dr. Bialick discussed GIST and desmoid tumors to keep pace with the ever-growing body of knowledge about these disease groups, and the development of new tools and strategies to support this patient and caregiver community. A Q&A session followed the presentations.
For more information on Desmoid tumors, visit: bit.ly/Desmoid...
Learn more about GIST: liferaftgroup....
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DONATE to GIST research: liferaftgroup....

[@mc2643]

THANK YOU SO MUCH 👍

[@jannamaria7349]

Thank you so much for sharing this presentation. It has been immensely helpful to find all this wealth of information. Best wishes to these two great doctors! Good luck! 👍 🍀

[@mellowsunshine2724]

Do you know what is odd? My mom’s sister had a GIST. And I, her niece, have a Desmoid tumor. There has got to be something wrong in the family genetics. What do you think Dr. Trent?

[@LiferaftgroupOrg]

@mellowsunshine2724 We can definitely discuss that with you - please reach out with to [e-mail]

[@LiferaftgroupOrg]

Hello! Gastrointestinal stromal tumors (GISTs) and desmoid tumors are both rare types of tumors, and while they have distinct characteristics, there can be a genetic link, particularly with mutations in genes like KIT, PDGFRA (commonly associated with GISTs), and APC or β-catenin (associated with desmoid tumors). Genetic syndromes like Neurofibromatosis can predispose individuals to these kinds of tumors. It might be worth discussing genetic counseling or testing with your healthcare provider to explore whether there’s a hereditary risk in your family. Identifying a genetic predisposition could have implications for your treatment, as well as for the health of other family members. If you have any further questions or concerns, please feel free to reach out to me. Best, Toni (Research and Outreach Manager, [phone], [e-mail]

[@mellowsunshine2724]

@@LiferaftgroupOrg Thank you for this information. My surgical oncologist submitted the biopsy samples to Caris for molecular genetic testing. My GI doctor very recently referred me to genetic counseling at the hospital. I will be meeting a sarcoma doctor and medical oncologist for the first time. Thank you for offering your email and phone number. I might have some questions for you.