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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.
March 20
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MyDesmoidTumorTeam

Are there any new treatments for desmoid tumors growing on the spine and abdomen?

It's important to clarify that desmoid tumors are different from neurofibromatosis tumors. Desmoid tumors grow in soft tissues but don't involve the myelin sheath or nerves in the same way.

For desmoid tumors specifically, there are several Show Full Answer

Are there any new treatments for desmoid tumors growing on the spine and abdomen?

It's important to clarify that desmoid tumors are different from neurofibromatosis tumors. Desmoid tumors grow in soft tissues but don't involve the myelin sheath or nerves in the same way.

For desmoid tumors specifically, there are several newer treatment approaches available:

Targeted Therapies:
- Nirogacestat is the first FDA-approved targeted therapy specifically for desmoid tumors
- Tyrosine kinase inhibitors are another targeted therapy option
- These treatments focus on specific proteins that help tumors grow, often with fewer side effects than traditional chemotherapy

Other Treatment Options:
- Chemotherapy (used alone or in combination)
- Hormone therapy like tamoxifen
- Radiation therapy
- Cryoablation (freezing the tumor)

Current guidelines favor active surveillance (watch-and-wait) as the first approach rather than surgery, since desmoid tumors often return after surgical removal.

If you're dealing with tumors related to neurofibromatosis rather than desmoid tumors, it would be best to discuss treatment options specific to that condition with your healthcare team.

March 20

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