Has anyone any experience of Desmoid Fibromatosis Tumours?

[kaztuz]

I have been diagnosed recently with the above tumour, they are extremely rare and there is very little info out there. Although my consultant has sent me as much info as there is. Just wondering if anyone has had one or knows someone that has? They are not truly cancerous as they can't spread to other body parts, however they are not truly benign because they can be aggressive locally and can destroy healthy tissue and be devastating. Mine is wrapped around my femoral artery in my thigh.

[Sqad]

Never seen a case.

I cannot give you any more pertinent information than Googling and what you have described.

Wrapped around your Femoral Artery does cause treatment problems.

Keep me informed as I am as I am interested.