Waiting on pathology: Desmoid fibromatosis tumor

Hey! Thank you for asking. I did receive my pathology. Then took another week to get a game plan. (Just found out this past Fri). The good news is that is NOT cancer. I’m very grateful and relieved. The bad news is that it is mammary desmoid-type fibromatosis. Extremely rare finding which is why it has taken so long to get answers. Jacksonville sent it to Rochester for confirmation and typing. Only a handful of cases are found a year. Accounts for only .02 % of all breast tumors. Very aggressive but benign. Involved both inferior and medial margins. My surgeon summed it up like this.
“This was discussed in detail with our expert sarcoma pathologist, medical oncologist and my breast surgery and sarcoma colleagues. There is certainly a potential for local recurrence, need for medication and even potentially a future mastectomy.”
Apparently it has a high rate of reoccurrence (about 1/3 of the time). One of the few benign diseases that are handled by sarcoma doctors. Repeat diagnostic mammogram in May with physical exam (by my surgeon at Mayo) followed up every 6 months for a minimum of 3 years. I hesitated to post this because I’m struggling with wrapping my head around it. So many on here are fighting something that is a danger to their lives so I don’t want to sound whiny. I’m lucky in that regard. But I now have an issue that could cause lots of issues including a radical mastectomy. It doesn’t have the ability to metastasize but can grow into the chest wall and ribs. Because it is so rare there is limited information available and few studies. Less than 1500 desmoids a year in the US and mammary only account for less than 10% of those. The desmoid website doesn’t even discuss it. So……I will find comfort in the fact that it won’t kill me and learn to learn with a wait and see pattern. They know it’s still in there and in the 7 months it had already caused a retraction big enough to completely suck up the lower half of my breast……..I will just have to see what the future holds I guess. Grateful that I’m close enough to Mayo for all future care. Thank you again for checking on me! Sorry for the long post.

Hey! Thank you for asking. I did receive my pathology. Then took another week to get a game plan. (Just found out this past Fri). The good news is that is NOT cancer. I’m very grateful and relieved. The bad news is that it is mammary desmoid-type fibromatosis. Extremely rare finding which is why it has taken so long to get answers. Jacksonville sent it to Rochester for confirmation and typing. Only a handful of cases are found a year. Accounts for only .02 % of all breast tumors. Very aggressive but benign. Involved both inferior and medial margins. My surgeon summed it up like this.
“This was discussed in detail with our expert sarcoma pathologist, medical oncologist and my breast surgery and sarcoma colleagues. There is certainly a potential for local recurrence, need for medication and even potentially a future mastectomy.”
Apparently it has a high rate of reoccurrence (about 1/3 of the time). One of the few benign diseases that are handled by sarcoma doctors. Repeat diagnostic mammogram in May with physical exam (by my surgeon at Mayo) followed up every 6 months for a minimum of 3 years. I hesitated to post this because I’m struggling with wrapping my head around it. So many on here are fighting something that is a danger to their lives so I don’t want to sound whiny. I’m lucky in that regard. But I now have an issue that could cause lots of issues including a radical mastectomy. It doesn’t have the ability to metastasize but can grow into the chest wall and ribs. Because it is so rare there is limited information available and few studies. Less than 1500 desmoids a year in the US and mammary only account for less than 10% of those. The desmoid website doesn’t even discuss it. So……I will find comfort in the fact that it won’t kill me and learn to learn with a wait and see pattern. They know it’s still in there and in the 7 months it had already caused a retraction big enough to completely suck up the lower half of my breast……..I will just have to see what the future holds I guess. Grateful that I’m close enough to Mayo for all future care. Thank you again for checking on me! Sorry for the long post.

@tanyakem
I hope you received good treatment. I realize this was a couple of years ago but since this is so rare I was hopeful you might be able to offer some insight about treatment options. Although my situation is different. The Desmoid tumor identified in my breast is only 1/4 inch. I have been waiting several months to see a breast specialist in the Cancer Center at the University of Michigan. From everything I have read and the opinion from my PCP concurred that because of the size they will probably elect to “wait and see” and just monitor the growth. How did this turn out for you if you don’t mind? Despite my being grateful it is not cancer it is very anxiety producing.