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Harlingen, TX
June 8
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MyDesmoidTumorTeam

Managing an intra-abdominal desmoid tumor that has led to complications like a fistula and infection is genuinely complex, and it's so important to be working with specialists who have desmoid tumor expertise — often called sarcoma specialists or oncologists.

Because of these serious complications, the treatment approach Show Full Answer

Managing an intra-abdominal desmoid tumor that has led to complications like a fistula and infection is genuinely complex, and it's so important to be working with specialists who have desmoid tumor expertise — often called sarcoma specialists or oncologists.

Because of these serious complications, the treatment approach will likely need to address both the tumor itself and the complications together. Here's a general overview of what may be considered:

For the tumor:
- Active surveillance is typically a starting point, but with complications like a fistula and infection, a more active treatment approach is likely needed
- Medical therapy (targeted therapies like nirogacestat/Ogsiveo or sorafenib/Nexavar, or chemotherapy) is often a first-line treatment for intra-abdominal tumors
- Surgery is generally avoided due to high recurrence rates and the difficulty of operating near vital organs, but may be considered if complications like blockages or organ damage are present When complications like a fistula or infection are involved, surgery may become more necessary — even though it carries higher risks in this location. Decisions like this are best made by a multidisciplinary tumor board, a team of specialists from different fields who review the case together.

It's strongly recommended to discuss these specific complications openly with a desmoid tumor specialist, as the presence of a fistula and infection can significantly influence which treatment path is safest and most effective for the individual situation.

June 8

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