Fibromatosis Diagnosed and Change of Consultant

After finding a lump in my right breast I had it removed on 20 March as 2 core biopsies were inconclusive. I went back 2 weeks later to be told it was fibromatosis which is a very rare but aggressive benign tumour and they needed to operate again to get completely clear margins. I thought this was just routine and on 8 May I had this operation thinking I could put everything behind me after this.

First of all, having small breasts anyway, I was so upset after the op to find that I was quite misshapen but after a week that sorted itself out.

When I went back to clinic I was told that my condition was so rare that I was being transferred to Mr Keiran Horgan at The LGI in Leeds as he knew more about this type of tumour. Also, my surgeon was unable to get completely clear margins due to my having small breasts as it would have left a definite delve. She also said that some of the tumour had gone into my muscle but I think she may have been able to get some if not all of that out.

My appointment at Leeds has now come through for 2 weeks tomorrow and I am absolutely bricking it. There is so little info on the web on fibromatosis and with having small boobs I would be totally devastated to lose what I had. Also, on one of the US websites I saw it said that that particular surgeon would not do recon surgery until 3 years after the removal of the tumour/margins in case of recurrence.

I have been quite positive each step of the way with my other two operations thinking that it will be sorted with this/the next one, but this time I am finding it so hard and am so emotional about it.

Thanks for reading this.

Sandra xx

Hi Sandra,

I think I saw another post by you a few days ago on a different thread?
I’m sorry that you are having such a hard time of it…the two week wait thing really is a form of torture….

Well, I don’t know anything about fibromatoses, but I’m hoping that I might be able to offer you a ray of hope about recon. Have you seen the threads on here about lipofil or lipostyling? It is still a very new procedure, but you could try asking your new team about it. Try the search facility; there are several threads on the subject. Apologies if this is already something you have heard about & ruled out.

I’m still waiting for my breast to settle down after my segmental mast. from last October (!) But I always assumed that I would have to wait at least 12 months before even thinking about whether I would have any more ‘work’ done…

Hopefully someone will come along with some more specific help for you soon,



Thanks for your reply and you are right, I did post to the reconstructive surgery heading on Friday as after my second op I had such a loss of shape at first.

I hadn’t heard much about lipofil etc but I assume that this is a bit like liposuction where they take fat from thighs, tummy etc and implant in your boob. This may be OK for me but I am so tiny I only weigh 7½ stone and I am a bit scared of having 2 operation sites on me, however, anything would be better than being without a breast or being lopsided.

I need to just wait 2 weeks and see what they have to say but what is scaring me most is that my initial consultant said I wouldn’t hear anything about an appointment at the LGI for about 2 months but not to worry. I know I shouldn’t complain but when an appointment comes in 2 weeks I’m thinking that I need some serious work doing.

I have been so positive in all my other appointments thinking that tis time I’ll get the all clear that this time I just can’t summon up the optimism to be hopeful - I suppose I can’t b disappointed that way.

Excuse my ignorance, but what is a segmental mast? Have you had to have a mastectomy and then recon? If so, how have you coped with this?

S xx

Hi Sandra,

Yes, lipofil is a bit like liposuction, so if you are very slim I don’t know if it’s appropriate. My only contact with people who have had it is through the threads on this site, so you could try asking some of those who have posted about it. I first heard about it through someone I know who lives in Japan ( I believe that the patent holding co. is based there….Cytori…I think) so I would guess that it has been used on petite ladies…?!

My surgery was not a mastectomy, it involved taking a long segment, like part of an orange(!) & mine was at a vertical, 12:00 position if you know what I mean. Neither my surgeon or my BCN could give me any real idea of what I would look like afterwards, & that added a further layer of stress to my op. (I’m fairly ‘petite’ too!) So I felt reassured about the idea of SOME form of recon at a later date. At this point, I’m still waiting for things to settle down though, but it does look pretty good so far.

It sounds like your surgeon has followed protocol by NOT removing more tissue than (I guess?) was “agreed” with you before the op? As far as I’m aware, it is generally considered best allover treatment practice to conserve as much of the breast as is possible. It sounded to me from your post like you might be offered surgery similar to mine, or some other method, which might not mean mastectomy, so that’s why I brought up the lipofil.

I can’t really offer you any help about your waiting times for your appointments. It’s just hard!! My own hospital, though wonderful, is constantly overwhelmed and it is a real source of despair amongst all of us who attend the clinics. I hope that the two weeks go quickly for you & that the appt. goes well….let us know how you get on.


Hi L

Thank you so much for your post and your reassurances. At the end of the day I will just have to wait and see what happens a week on Monday but I am so lucky to have been given an appointment so quickly but, diversely, that is what scared me so much as i didn’t expect the appointment to come through for a couple of months.

It makes total sense what you say about surgeons not wanting to take more breast tissue than was agreed and this was one of my really big fears before my first op that they might have to take most of my breast away and I could wake up like that. Deep down, I think this is the main reason I wanted it done under a local rather than a general anaesthetic.

I’m compiling a list of questions (in my head for now!!) that I need answers to and I will let you know how I get on after the 15th.

You take care.

S xx