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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.
A MyDesmoidTumorTeam Member asked a question 💭
April 13, 2025
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A MyDesmoidTumorTeam Member

As one who is on it, and have been since 12/28/23, see what your medical team has to say. They are the so called experts. If you don't follow a doctors advice I say why both going to them. If told to take it I would and if not then I wouldn't. Do your homework and be your own advocate. Good luck.

April 13, 2025
MyDesmoidTumorTeam

Even after successful surgical removal of a desmoid tumor, follow-up care and monitoring are critical because these tumors can grow back. Regular imaging tests like MRI or CT scans are typically scheduled every three to six months initially to check for any signs of recurrence. While Ogsiveo (nirogacestat) has shown promise Show Full Answer

Even after successful surgical removal of a desmoid tumor, follow-up care and monitoring are critical because these tumors can grow back. Regular imaging tests like MRI or CT scans are typically scheduled every three to six months initially to check for any signs of recurrence. While Ogsiveo (nirogacestat) has shown promise in managing desmoid tumors, treatment decisions after complete tumor removal should be made in consultation with your healthcare team. They will consider your individual risk factors and monitor you closely through regular follow-up appointments to determine if additional treatments are needed.

April 13, 2025

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