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Topic: Mammary Fibromatosis

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Oct 10, 2015 09:42PM

ekaren wrote:

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)."

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.

Dx: mammary fibromatosis
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Dec 6, 2015 03:42PM - edited Dec 6, 2015 03:44PM by aldunc

What did you end up doing? I just had surgery Wednesday to remove a 1 cm fibromatosis tumor from my breast. I'm waiting for final pathology results now. We "watched' the tumor for 60 days after the initial biopsy and diagnosis. It showed signs it was growing so my doctor recommended it come out right away.

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Dec 7, 2015 06:55PM Moderators wrote:

aldunc, sorry to hear about what you are going through. Please let us know the results!

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Dec 28, 2015 09:06PM LauraMcGee wrote:

I was recently diagnosed with breast fibromatosis, so am trying to find as much info as possible. Have scoured the web. I have a bilateral excisional biopsy scheduled on Wednesday morning. Was surprised at how few posts I'd found in forums out there, but still wanted to query this group. I've already had the core needle and have a positive diagnosis for this and understand it's not common. I have a list of questions I've put together for the surgeon before the procedure ... Things I didn't think about when I was processing the news in my surgical consult. Any advice from those who have dealt with it

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Dec 29, 2015 01:21AM ekaren wrote:

To follow up on my surgery, I had a lumpectomy on Oct 30. Since I found the lump myself and noticed it growing (although I thought it was a bruise or pimple), I did not wait for surgery. Good news--same diagnosis after surgery. Not so good news--the margins were not clear. My tumor is so inferior that the biopsy showed that it had actually gone into the abdominal tissue.

So now I will have exams every 3 months and either mammograms or MRIs every 6 months. It's hard to even image this area with mammograms, so that will be worthless for me. And while ultrasounds are the best bet, it will be hard to be able to tell the difference between a tumor growth or scar tissue. I just have to remind myself that it is benign.

@LauraMcGee, since I have a physiology background, I went to sites like Medscape to get my information.

This is a layman's summary (attempting to be humorous):

A good article is Fibromatosis: The Breast Cancer Imitator:

One word of caution, if you start looking at the case studies, realize that there is a good chance you will see photos of people with extreme cases. For example, sometimes the sizes of the tumors are so large that most people would have sought medical attention before it got to that stage. Otherwise, the images can be quite shocking.

From what I learned from a lot of reading, there are two choices:

  1. Watchful waiting: This isn't "not doing anything"; instead, it serves a purpose to determine the rate of growth.
  2. Lumpectomy or mastectomy to remove the growth and surrounding tissue, if necessary. Most cases I read about required a lumpectomy, but some with rapid growth or in young women opted for mastectomy.

From everything I've read, radiation, chemotherapy, and tamoxifen are no longer considered for treatment.

Personally, I wouldn't opt for being in the watchful waiting group for too long (i.e. over 6 months), since I have a family history of breast cancer and knew that I wouldn't have the final definitive diagnosis from the needle biopsy. The true diagnosis is from the excisional biopsy when the lump is removed. In a small, but statistically significant amount of cases, the final diagnosis is different from the initial findings. That means that it could still be some kind of benign growth--just not this rare type, or it could be malignant.

If you have the option, I would go to a large regional cancer center.

@LauraMcGee, you said you were having a bilateral biopsy--did they find fibromatosis in both breasts? If so, that is very rare.

Dx: mammary fibromatosis
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Jun 6, 2017 06:37PM - edited Jun 6, 2017 06:38PM by 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.

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Jun 6, 2017 06:58PM MTwoman wrote:


I am so sorry that you find yourself here in search of information for your daughter. The poster has not been back to these boards since Dec. 2015 (her last post above), so I wouldn't expect that she will read your post. You may want to start a new thread under the same category, although it might be better suited (and get more responses) under the "benign breast conditions" as this condition is technically not a less common type of cancer but a rare type of benign breast condition. Good luck connecting with others that have info!

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Jun 8, 2017 03:31PM lgibson wrote:

Thank you, good idea.

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