More about Desmoid Tumors
The National Cancer Institute says desmoid tumors are most often found in the abdomen, shoulders, upper arms and thighs, and that most do not shorten life, though they can be painful and hard to get rid of.
Keep reading about Desmoid Tumors
Most desmoid tumors that are not inherited carry a change in the CTNNB1 gene, which NORD says is found in up to 85% of them. Changes in the APC gene cause the desmoid tumors seen with familial adenomatous polyposis and about 10-15% of other cases. Both changes lead to a buildup of a protein called beta-catenin, which pushes cells to keep growing. A biopsy confirms the diagnosis.
Because some desmoid tumors stay stable or shrink on their own, NORD and the National Cancer Institute both describe careful watching with regular MRI or CT scans as a common first step. When a tumor grows or causes symptoms, options include medicines, cryoablation, surgery and radiation; NORD reports that the tumor returns in 20-30% of people after surgery. In November 2023 the FDA approved Ogsiveo (nirogacestat), the first medicine approved for desmoid tumors, for adults whose tumors are progressing and need systemic treatment.
What are the symptoms of Desmoid Tumors?
These are common symptoms of Desmoid Tumors, and how strong they are varies from person to person.
- A lump or swelling, often painless at first
- Pain when the tumor presses on nerves or muscles
- Trouble moving a limb or limping
- Belly pain or bowel blockage from tumors in the abdomen
- Poor sleep from pain
- No symptoms at all in some people
Who gets Desmoid Tumors?
NORD says desmoid tumors are most common between ages 10 and 40 and about twice as common in women as in men, while children of both sexes are affected equally. The National Cancer Institute puts most cases between ages 15 and 60. They are more common in people with familial adenomatous polyposis (FAP), an inherited condition: NORD reports that 3.5-32% of people with FAP develop them.
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Which medicines are FDA-approved for Desmoid Tumors?
There is currently 1 FDA-approved medication for Desmoid Tumors.
Source: openFDA drug labeling data. This list may not include all treatments. Always consult your doctor.
How to get help paying for Desmoid Tumors treatment
Charity funds and drugmaker programs for Desmoid Tumors, checked at the source.
No charity fund for this condition is open right now. Funds reopen when they receive new donations; the foundations let you sign up to be told when one opens.
Side effects people have reported to the FDA
Side effects people have reported to the FDA
Real-world side effect reports from the FDA Adverse Event Reporting System (FAERS). Includes both FDA-approved drugs and investigational therapies from active clinical trials. Click any drug to see what patients reported.
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Diagnosis and genetic testing
How Desmoid Tumors is diagnosed
Most desmoid tumors are not inherited and carry a CTNNB1 change found only in the tumor. The National Cancer Institute says about 5-10% run in families, mainly with familial adenomatous polyposis (FAP), which is caused by an inherited APC variant and passed on in an autosomal dominant pattern (NORD).
Trusted Desmoid Tumors resources
Reputable organizations and medical references for learning more about Desmoid Tumors, including disease registries, foundation resources, and clinical guidelines.