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Fibromatosis of the breast

Posted , 3 users are following.

cheryld33
cheryld33

Hi,

I found a lump on my breast 8 weeks ago and was referred to the breast clinic last week where I had a mammogram, ultrasound and biopsy taken. I went back today and they told me I had fibromatosis which is a benign breast tumour. I have to have a operation to remove the tumour but have been told that its extremely rare and that they don't know how to treat it until they have removed it and do another biopsy. Has anyone else had this? Been reading on the internet (I know I shouldn't!) and it says in some cases you need reconstruction, chemo and radio. There just seems to be very little to refer to.

 

0 likes, 9 replies

9 Replies

  • dambudzo
    dambudzo cheryld33

    Posted

    Is there an information advisor within the breast clinic? There was at the clinic I attended and I was able to make an appointment with her to discuss my queries. Failing that, the Macmillan nurses at the hospital might be able to help? (They have information on some benign tumours as well).

    best wishes

  • Lin36
    Lin36 cheryld33

    Posted

    Hi Cheryl.  Like you I found a small lump in the top of my left breast back in July 2005.  Since then I have had 2 big operations, a course of Tamoxifin, 15 chemo treatments & been a guinea pig for the use of Pazopanib.  My oncologist tells me that surgery is now deemed not the best route.  My tumour now extends around the right hand side of my rib cage with another bit down into the bit below my ribs.  I experienced terrible side effects from the Pazopanib but with doses reduced it became bearable .  The good news however is that it has been the only thing that has halted the growth.  I have been off it for 10 months (the first break from treatments since 2008!) & my last MRI in June showed it still stable.  I know everybody is different but perhaps refer your consultant to the paper co written by my oncologist Dr Heather McCarty Belfast City Hospital Cancer Centre.  She played down the side effects but the drug has definitely helped me.  Of course it is expensive & I was lucky that I was part of a trial.  It is used more usually to treat advanced kidney cancer. Hope you get somewhere with your treatment quicker than I did but the rarety of the condition works against us
    • cheryld33
      cheryld33 Lin36

      Posted

      Hi Lin,

      Thanks so much for replying, there really isn't anything on the web at all and think my surgeon is a bit perplexed. I had surgery to remove my tumour on Friday, all went well although in the space of 3 weeks my lump had doubled in size to over 4cm so was growing really fast. He seems confident that they have got rid but I know from seeing some articles on the web it has a high risk of coming back. Did yours come back after the initial surgery and in what time frame? Such scary stuff isn't it? 

  • Lin36
    Lin36 cheryld33

    Posted

    Hi Cheryl.  Hope you recovering well.  My tumour when first found was about the size of my small finger nail.  I was referred to an orthopaedic consultant after 8 months of fighting.  He specialised in lumps.  After the biopsy showed it wasn't cancer but AF they decided to follow the wait & monitor policy.  That was from July 2006 to my first surgery in February 2008.  The tumour was removed from my armpit & was about 5cm in diameter.  In March 2009 they removed the tumour from under my shoulder blade & it was the size of the surgeon's fist.  At the end of that year, he admitted defeat & referred me to the Cancer Centre for radiotherapy.  I was told there that by this stage the AF was to extensive & too deep.  They then tried Tamoxifen.  The consultant wouldn't listen to me telling him that the tumour wasn't hormone receptive & that it was now growing into my lower side.  I complained & was given a new oncologist - Dr Heather McCarty.  She tried chemo but this didn't work.  I was sent to The Royal Marsden & it was them that suggested we try Pazopanib.  Keep on at them to monitor you to make sure that if there is any regrowth they catch it early so that you don't end up in my position.  I'm right handed & have very limited use in my shoulder. I had to give up my managerial job after 25 years so my life has changed drastically.
    • cheryld33
      cheryld33 Lin36

      Posted

      Lin,

      That sounds awful. My doctor has been very hands up and said he's never dealt with fibromatosis before but he's said that I'll be monitored quickly for life. He said as I was young (34) he would try and minimise scarring so he went up through the nipple. I'm also very large chested which complicated things as as they have had to remove a fair bit I'm a bit hollow now so need to wait for the swelling to settle down to see if I possibly need any reconstruction work. I'm healing well but just worried that it's going to come back as think that's where the problems will start. Think I will mention to him about that paper although doctors do hate being told don't they! 

  • Lin36
    Lin36 cheryld33

    Posted

    You are so right about doctors.  At times I feel I have known more about my condition than they did!  Maybe mention that you happened to start a conversation with me by chance & the trial that had been done which seemed to suggest Pazopanib works.  I believe it has now been licensed for use for sarcoma which AF is classified under so it should be available if you need it.  All the very best for you recovery & if you ever need a chat please contact me.  I'm a 50 year old mother of 3 by the way.
    • cheryld33
      cheryld33 Lin36

      Posted

      Thank you, you have been so helpful.  Can I just ask what AF stands for? 
  • Lin36
    Lin36 cheryld33

    Posted

    Hi Cheryl

    just couldn't be bothered typing Aggressive Fibromatosis every time

    • cheryld33
      cheryld33 Lin36

      Posted

      Ahhhh! No worries. Will let you know how I get on. Thanks for all your info. 
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