Desmoid fibromatosis found in breast of 19 year old female

Posted by beckyolson33 @beckyolson33, Jun 10 8:13am

My daughter has gone through her GYN to a dermo, had an ultrasound, biopsy of the tumor, followed by months of testing on that biopsy for inconclusive results. She was then sent to our breast cancer specialists here in Idaho. They agreed it needed to be removed in full, but referred her to leave Idaho and have the surgery done elsewhere. We are now traveling down to the Huntsman cancer center in SLC Utah. Just finished an MRI after the initial meeting with the breast surgeon and the breast reconstructive surgeon. My questions: has anyone else heard of this type of tumor? Do you know if alternatives to surgery have been successful? Chemo? Radiation?

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beckyolson33 | @beckyolson33 | Jun 22 4:55pm

In reply to @gently "How large is the tumor? My understanding is that desmoid fibromatosis doesn't spread from one breast..." + (show)

Sorry I missed this question amongst the other posts. The tumor is up to 4.5 cm and extends into the subcutaneous tissues but otherwise confined to the skin.

The tumor isn’t spreading but it can recur in other parts of the body. We haven’t had the surgeon explain the MRI to us yet, so the similar tissue in the left breast might not be anything to worry about. So many unknowns at this point still. The waiting is agonizing.

bmb | @bmb | Jul 1 11:07pm

In reply to @windyshores "I had to read about this kind of tumor https://www.mayoclinic.org/diseases-conditions/desmoid-tumors/diagnosis-treatment/drc-20446388 So it is non-cancerous in the..." + (show)

I know a person who is doing well aprox 3 years post operative after surgery for removal of an abdominal Desmond tumor. Surgery was followed by chemotherapy. She’s had regular PET scans that have all been clear.