Fibromatosis

lgibson

My 22 year old daughter was diagnosed in January with mammary fibromatosis in both breasts. We have no history in our family of breast cancer or colon cancer(which I understand could be a risk factor) . They watched the tumors for approximately 2 months and took her off birth control in case that was causing them to grow. It was determined that the tumors were continuing to grow. In light of the rapid growth, she opted for surgery about 10 days ago to remove the tumors from both breasts. They just received the pathology report back and it seems they did not get clear margins on either tumor. They are also watching two more suspicious spots near her chest wall. I am trying to find out more about this illusive tumor and find a doctor who knows more about it in an effort to help my daughter educate herself on further treatment. She is currently living in Denver and although her doctor is a cancer specialist, she has only ever treated one case of mammary fibromatosis in her career. At the very least I would like to find other doctors that she can collaborate with to determine the best course of treatment. Any help would really be appreciated.

MTwoman

So sorry you're here with concerns for your daughter's breast health Igibson. Here is a site that gives good and credible information:

http://breast-cancer.ca/fibro-osis/

There are a number of specialty breast clinics/hospitals in Denver, but as you've probably been told, mammary fibromatosis is quite rare (0.2% of all primary breast tumors), so there might not be an expert in that field, specifically. An experienced breast specialist would be as good an expert as you may find. Frequently, with little known phenomenon, experts are willing to call colleagues and consult. I'm hoping someone else with some more info can come along and help. Good luck!

Kaos11

I was just diagnosed with fibromatosis yesterday. I have an appointment with the surgeon in 2 weeks. Obviously there is not a lot out there and it's hard to find a doctor who has seen this.

How is your daughter doing

MelissaDallas

Here is a good recent write up on NCI site:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53958...