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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.
July 6, 2025
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A MyDesmoidTumorTeam Member

Thank you, I'll keep you posted!!💙

July 6, 2025
A MyDesmoidTumorTeam Member

She advised to make sure it's necessary before letting them take his leg. Some diet changes can help with the symptoms. Sending prayers

July 6, 2025
A MyDesmoidTumorTeam Member

I'm so sorry. The woman I know is much older and had this happen when she was 12. I had hoped technology has progressed since then. I'm sending prayers that another option is possible.

July 6, 2025
A MyDesmoidTumorTeam Member

He did have a biopsy, but I now wish I had gone to a specialist first because the first removal was from a plastic surgeon. He now that it has grown back is sending me to an orthopedic surgeon. Thank you for your feedback, it is appreciated!!

July 6, 2025
A MyDesmoidTumorTeam Member

Has your son already had a biopsy? A biopsy to confirm, if positive the next step is genetic testing for fap. This is important because I know someone who had one in her leg. Before surgery make sure you get a second opinion from someone who knows what they are doing. The woman I know did not and trusted the first dr. Because of this her leg tumor grew back and she had to have surgery to remove her leg.

July 6, 2025

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