Mammary Fibromatosis

I was just diagnosed via needle biopsy with Mammary Fibromatosis. I went for an annual check up. I pointed out to my ObGyn one small lump I had under my left breast for the last month or two. I thought it was a deep pimple rubbing against the band of my bra. Due to family history of breast cancer (mom twice and several aunts) and age (47), she wanted me to start having screenings every 6 months alternating mammograms with MRIs. I had an MRI one week which was BI-RADs IV and then ultrasound, mammogram, and needle biopsy when they changed it to BI-RADS V.

I received the radiology and pathology report online before I could speak to the doctor.

DIAGNOSIS: Benign spindle cell perforation compatible with mammary fibromatosis. Imaging and pathology results are concordant. Note that this finding does have irregular margins by ultrasound.

Pathology comment: Conservative excision with negative margins is generally recommended for inframammary fibromatosis as the proliferation can have a regular fingerlike extensions at the periphery, and the chance for local recurrence if not completely excised.

Of course I was doing back-flips hearing the word benign. My doctor's recommendation was to see her back in 3 months for a check up or that I could have it surgically removed. She seemed surprised when I wanted to consult with the surgeon.

I have a physiology background so I've spent my share of time on PubMed and Medscape. This is a rare little bugger, but can be locally invasive. I know my doc is setting up a consult with the local surgeon, but I think I'm going to opt to go to a larger cancer center where someone may know more about this.

"Fibromatosis is a benign entity without metastatic potential but carries a significant risk for local recurrence (5). It accounts for only 0.2% of all breast tumors and 0.3% of all solid tumors (4). The calculated lesion occurrence at BUMC is also 0.2% of all breast tumors. Between January 1, 2009, and March 31, 2011, there were four documented cases of breast fibromatosis among the 2174 breast tumors biopsied. The patients ranged in age from 13 to 83 years. Most cases occurred in young, premenopausal women, but cases have also been reported in men (3, 4, 6)."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC352376...

I'm just surprised that I have once again been diagnosed with something very rare. Last year I had emergency surgery and 1/3 of my colon removed for cecal volvulus--my surgeon sees about one case a year and it's usually someone in her 80s. Almost 20 years ago, I was diagnosed with syringomyelia--a cyst in the middle of my spine--and had surgery to stabilize the spine, but it couldn't be removed.

I have searched the forums and have only found 3 people diagnosed with it and one person's diagnosis was changed after the lumpectomy. Seeing that it is rare, I thought I would post on here to see if anyone else has had experience with this. The treatments in case reports range from lumpectomy to mastectomy and radiation--not exactly what I expected for a benign tumor.

I am trying to come up with questions to ask the surgeon.

1. Since this is inferior to the inframmary fold, does it involve breast tissue, muscle, fat, and/or bone?

2. Since it is small (less than 2 cm), would a waiting period before excision helpful in determining whether it is fast growing?

Any other suggestions for questions or advice are welcome.

Thanks in advance.