Has anyone had a desmoid tumor in their mouth, specifically in the lower jaw lingual mucosa?
Your concerns about the diagnosis are understandable. Desmoid tumors in the head and neck are extremely rare, making up only about 10-15% of extra-abdominal cases. This means roughly 162 people in the U.S. are diagnosed with head and Show Full Answer
Has anyone had a desmoid tumor in their mouth, specifically in the lower jaw lingual mucosa?
Your concerns about the diagnosis are understandable. Desmoid tumors in the head and neck are extremely rare, making up only about 10-15% of extra-abdominal cases. This means roughly 162 people in the U.S. are diagnosed with head and neck desmoid tumors each year.
While desmoid tumors most commonly affect people between 15 and 60 years old, especially those in their 20s and 30s, it's important to remember that you can still develop a desmoid tumor outside this age range. Being 74 doesn't rule out the diagnosis. Given how rare desmoid tumors are, misdiagnosis is actually quite common. Studies show that up to 30-40% of desmoid tumors are diagnosed incorrectly because they can look similar to other conditions like lipomas and sarcomas.
Because of this, getting a second opinion is strongly recommended. Consider asking your doctor about having your biopsy reviewed by a soft tissue pathologist who specializes in diagnosing sarcomas and rare soft tissue conditions. These specialists have more experience with desmoid tumor tissue samples and can perform the specific tests needed for accurate diagnosis.
If the diagnosis is confirmed, finding a sarcoma specialist experienced with desmoid tumors will be important for determining the best treatment approach.
December 31, 2025
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