Hi, I had a lumpectomy on 20 March to remove what turned out to be a Fibromatosis. I had this done under local anaesthetic and I have had little or no loss of shape since this surgery.
When I went back to clinic I was told that I would need a further op under general anaesthetic to “shave the edges” for complete clearance as the Fibromatosis would come back.
I have had this done today and I am quite distressed at the results it has left. I have lost quite a lot of tissue (which I can’t afford to lose!), my breasts are now uneven and there is a deep crease in my operated breast.
At no time was I told it could be this drastic and was told it was a very simple procedure just “to shave the edges to prevent recurrence”. When I mentioned it to the nurses once I had come round they said that scar tissue had been removed from the previous op.
I have a follow up appointment with my surgeon (a lady) in 2 weeks when I will obviously discuss this with her but I wondered if anyone else had experience of this and whether they do do recon on cases like this?
Any advice would be great. Thanks for reading this.
Sandra xx
Hi Sandra
Not had personal experience of this as I had a mastectomy but I have heard of it from other women. Policy varies from hospital to hospital and case to case, sometimes they do not get lear margins after second excision and the plan needs rethinking anyway. Discuss your concerns with the surgeon, there is a range of things they can d to make a better cosmetic appearance. Be sure to let her know how this is affecting you and as a word of comfort, you will have lots of changes in the appearance post surgery before the breast finally settles.
Very best of luck and hope you fell better soon.
Love
Jane x
hi sandra
im sorry to hear you story .my story is very simular to yours i was told at the age of 19 that i had mutliple fibroadenomas in both breasts and that my best bet was to have a masectomy and reconstructon this didnt happen but three lumpectomies later and 27 fibroadenomas i now two have misshapen/ un even breasts it is really hard and very upsetting have you spoken to your gp they might be able to wright a letter to you suregon just to explain how much it is affecting you im very lucky as i have been working with a pshcoligst for a year it looks like i might have to have another lumpectomy and then have something done to improve the shape of them .
take care and get well soon
from katy xxx
Hi Katy & Jane
Thanks for your comments and I know I am so much more fortunate than a lot of people.
I think I probably need to wait and see how the swelling settles down over the next few days and then maybe write to my consultant as often I don’t get to see her in clinic and it is one of her registrars instead.
I feel I need to discuss this directly with her so there is no confusion as I feel I wasn’t told the complete picture by her registrar at clinic before my op.
I will keep you posted.
Keep well both.
Sandra xx
Sandra - your loss is not trivial or less than anyone else’s, it is bafd for you and for all of us, so you don’t need to minimise your suffering. I think that it does make sense to let it settle and in any case they rarely do anything quickly. Next hurdle for you is results and I hope all is good - do flag your concerns early. In my experience if you don’t they think you are okay with it.
Kepp well Katy and Sandra
Love
Jane x
hi sandra and jane
thankyou jane thats very kind of you ,sandra that would be a good idea keep us posted i will let you all no how my appoment goes next week .
take care to you both
from katy x
hi sandra how did your appoment go
from katy xx
Hi Katy, thanks for thinking of me and I was going to do a new posting today.
I went back to see my consultant who said that she hadn’t been able to get completely clear margins with me being so small as it would have left a definite indentation. I have now been transferred to the top specialist for fibromatosis, Keiran Horgan, at the Leeds LGI. Apparently fibromatosis is so rare (and is completely different to fibroadenoma) that they only see about 1 case a year.
I have been trying to research this on the web but there is so little on it and have scared myself silly. On one site it said that some people need a total mastectomy but then have to wait 3 years for recon in case it comes back. It is a very aggressive tumour, albeit benign, and mine had already spread into my muscle.
My appointment has come through for Monday 15 June so I am feeling quite tearful at the moment but just trying to keep busy.
I will keep you updated following my appointment but hopefully they will just keep an eye on me with scans etc to make sure it doesn’t come back.
Sandra xx
Hi again Katy
Sorry, so busy moaning about my problems I didn’t ask how your appointment went.
Need to focus on someone else instead of myself!!
S xx
hi sandra
im so sorry to hear that it must be very frighting for you my thoughts are with you .
thankyou for asking about my appoment at least you might get some prober answers from this new suregon i have changed consults 3 times . my appoment didnt go very well they didnt really wont to listen to what i had to say and i have now been put on tablets to help and i now have to wear a mascetomy bra as i have been to nearly every shop in my local area and they have turned me away because they say they cant help till i get something to even my breasts out even though mine are only fibroadenomas they said they will do something eventally ( years ) because im only 23.
did you know that you can phone the breastcancercare helpline they might be able to give you some advice and they will listen to you .
i hope you get the answers you need and some prober help and you dont need to aplogize to me it can be very diffucult when you have no one to relate to .
take care and get well soon
katy xxxx