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Real members of MyDesmoidTumorTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What’s Your Biggest Challenge In Managing A Desmoid Tumor? 🌱💪

A MyDesmoidTumorTeam Member asked a question 💭
San Francisco, CA

Living with a desmoid tumor can bring unique obstacles. Share what has helped you manage your symptoms or cope with the emotional impact. 💬 #Question

November 19, 2024
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A MyDesmoidTumorTeam Member

When there is nothing to do, "crying over spilled milk" doesn't make it better. Do what you can while you can

November 23, 2024
A MyDesmoidTumorTeam Member

Scar tissue. I had numerous tumors grow thru organs which resulted in over 10 major abdominal surgeries over a 15 year period. A doctor at Denver General Hospital removed so much scar tissue this past March that I lost over two pant sizes. I would see if there’s a way to minimize the buildup of scar tissue. I had so much it closed off the ureter to my right kidney and I now only have one functional kidney

December 10, 2024
A MyDesmoidTumorTeam Member

My grandmother used to have a saying - you can stay in bed and cry or get out of it and live your life. I choose to get out of bed. Days may not be great, but at least I am still alive doing what I can.

November 20, 2024

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