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I had surgery for tumor removal in January 2023. Pathology report came back a few weeks later for desmoid and positive margins. I was told that I did not need any followup because the tumor was benign. 2 years later I have not had any follow-up. What questions do I need to be asking my doctors for continual care?

February 12, 2025
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A MyDesmoidTumorTeam Member

This site and www.dtrf.org is the best recommendation I can give someone. You need follow up. Had a doctor keep insisting I needed no more intervention. I fired him and the doctor after that. I found someone else who helped me start my dream team of 12 specialist. Make an appointment with your doctor to feel him out, if not comfortable you have options. Do not fire a doctor until you have a replacement.

Home - The Desmoid Tumor Research Foundation
Home - The Desmoid Tumor Research Foundation
February 19, 2025
MyDesmoidTumorTeam

It’s important to have follow-up care even if the tumor was benign, especially with positive margins, as desmoid tumors can return. You should ask your doctor about:

1. Regular imaging tests (MRI or CT scans) to monitor for recurrence
2. How often follow-ups should be scheduled
3. Signs or symptoms to watch for that might Show Full Answer

It’s important to have follow-up care even if the tumor was benign, especially with positive margins, as desmoid tumors can return. You should ask your doctor about:

1. Regular imaging tests (MRI or CT scans) to monitor for recurrence.
2. How often follow-ups should be scheduled.
3. Signs or symptoms to watch for that might indicate tumor regrowth.
4. Whether additional treatments or monitoring are needed given the positive margins.

Regular follow-ups can help catch any recurrence early and improve outcomes.

February 12, 2025

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