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Topic: 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: Jan 23, 2013 05:46PM

Pepperdog wrote:

Having been diagnosed over here in the united kingdom, I did all the on line research I could find regarding this disease and it sounded so straight forward but somewhat scarey.  One operation down adn the test results back, bad news, no clear margin surrounding the excised lump, back in 4 weeks later for more tissue out.

Back for results and still no clear margin, back in after christmas and 3rd operation done, fingers crossed this has all of it and got the results this Monday to be told they found even more cells and less of a clearer margin than before.

As this is rare I am reaching out to anyone else who has this, I have to go in for an MRI to see if they are able to visualy spot the extent of the cells and do a 4th operation to remove the remaining bits, but they have said that is is likely a masectomy is more probable because the tests are not always clear and as they are having problems finding the edge of the disease, its possibly too big to leave in, whip out all breast tissue to be safe.

I have had 3 rotten operations, pretty fed up with it all and up till monday I didnt know what the future held for me, now I know and can prepare myself.  The first op was painful, the second one was excrutiating, the 3rd one I had so much fluid built up, it burst my wound opening and to this day I still have fluid coming out (although slower most days than the day it burst, yesterday was a bad one) plus a nice half inch hole in the wound site which is slowly closing.  They warned me each time that the pain would be worse, the fluid build up, the discomfort in the breast etc, and they were not wrong.  They have also said a 4th op will create even more potential issues and are hoping to put it off for a little longer to allow me to actually heal up a bit more before doing anything else, have to wait 6 weeks for the MRI anyway so hopefully that will help.

Not moaning, just cant believe that being told its not malignant and great news on that front, 5 months down the line I am still under going tests and facing another (at least) operation.

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Jan 23, 2013 10:22PM Moderators wrote:

Pepperdog, we're sorry you've been through so much with this! Using the Search function here, we see that there are a few other members who have mentioned fibromatosis, so you my want to connect with them by private messge in case they don't see your post.

Best wishes,

• The Mods

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Jan 25, 2013 02:08AM Pepperdog wrote:

thank you.

Its been hard to come to terms with what they have said this week and how complicated it will be getting.

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Jun 3, 2015 01:51AM - edited Jun 3, 2015 01:52AM by NATSGSG

hello @Pepperdog:

Hope this message finds you well and recovering....I know this may be a little late consider your thread was posted back in 2013. But I still wanted to stop by to share this link below that contains 893 scientific articles of fibromatosis of the breast that I hope those who visit your thread will find informative and useful to them too.

In the meantime, if you are interested to find out if there are immunotherapy treatment being used to treat  this disease, please consider visiting and/or writing to the Society for Immunotherapy of Cancer(SITU) to find out if they have begun using immunotherapy to treat fibromatosis, and perhaps even request to be put on their mailing list to keep you updated of any new developments?  Here's their link: 


Below is a VIDEO link discussing the use of immunotherapy in various cancer treatment (current hot cancer treatment topic). Fascinating to watch and good to know. 

Have a fantastic summer and sending you and everyone lots of wishes and enjoyment in your readings..@@!!@@

NATSGSG Dx 3/16/2015, IDC, Right, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Radiation Therapy 8/12/2015 Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Right

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