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Radiation Fibrosis Syndrome

Angel61Angel61 Member Posts: 22
edited September 2018 in General discussion
Hi everyone!!!! I was diagnosed with BC last year. I had DCIS and IDC......I had conserving surgery partial mastectomy with a flap reconstruction done......I had my yearly follow up in June this year and the mammogram and ultrasound picked up a mass....I had the biopsy straight away and it didn't contain any cancer cells......It was necrotic tissue. So I had to go back to Breast surgeon 3mths later which was last week....She said I was fine....I saw my radiation oncologist the day later for my routine check up......He told me I have radiation fibrosis syndrome.......I have pain daily and have trouble with the tendon at the front of my arm pit and pain in my arm, breast and left side of my breast. He told me it wont get better but will probably get worse and if I can't handle the pain he will give me medication which settle down the inflammation in the under lying cells which were damaged through the radiation.  I was wondering if anyone out there has had this and if anyone knows if I should just have the whole breast removed.....I would be grateful to hear from you.....I don't like the idea of living the rest of my life with daily pain and restricted movement in my arm. Thank you :)


  • lrb_03lrb_03 Member Posts: 1,201
    Hi @Angel61. Sorry to hear this has started. I had my treatment around 3 years ago. Doing great with range of motion for about the 18months. I had kept up my post surgery movement exercises for around 9 months. I did develop lymphoedema very early, both arm and breast,  so put a lot my discomfort down to that. My lymphoedema physio has been working on my shoulder for the last 12 months. I have stretches and exercises to do,  generally keep my movement going. The areas you have pain sound identical to mine, which my physio has long said was from radiation damage.  Maybe look up the Australian Lymphology Association website, see if there is a therapist in your area. I wouldn't trust anyone who doesn't have a good understanding of lymphoedema risk touch my shoulder, as they could potentially do more harm than good.
    Take care
  • lrb_03lrb_03 Member Posts: 1,201
    Oh, forgot to say, the pain I get in my breast is worse than my shoulder, and I've used a cheap TENS machine that I bought in Aldi, which worked well. 
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 110
    Hullo @Angel61, I had full mastectomy November 2017, recovered fine, no pain or swelling (after major node clearance) then 6 weeks radiation and now 5 months later have exactly the same as you. Nobody has ever given it a name but radiation fibrosis makes perfect sense. I doubt that further surgery would do anything to help. I have to stretch a lot every morning in the shower and often wake up with the discomfort/pain during the night. If your specialist can give you something to assist the cellular inflammation, try it. I haven't had any interest from anyone about this. Physio is only interested in lymphedema which I don't have. Right through this BC experience I have got the impression that all they care about is your survival. Quality of life ... Well, make the best of it if you can. There is no real effort to make it clear that you will suffer unspecifiable disabilities and just have to put up with them. You will never be the same. It has taken me a long time to come to terms with this and although I am grateful for being as well as I am and having some time still to do things I value, I do think there is far too much waffle and not enough simple honesty about the consequences of treatment and the extent of the unknowns. I hope things get better for you soon!
  • kmakmkmakm MelbourneMember Posts: 7,898
    I agree with you @Annski. No one ever spoke to me seriously about long term side effects with the exception of my BS, who touched on a couple. They do focus on survival first and foremost.
  • VangirlVangirl Melbourne CBDMember Posts: 311
    @Annski agree. Lots of talk about how treatments have come such a long way (which they have in terms of survival) but far less regard for the unwanted side effects both short and long-term.
    Going to ask my radiation oncologist about radiation fibrosis when I see him today.
  • SisterSister Adelaide Hills, SAMember Posts: 4,588
    Is this the same as the cording that you can get after surgery?  If so, maybe an oncology physio who does laser therapy can help you.
  • Angel61Angel61 Member Posts: 22
    Thank you ladies for your comments.....I have a wonderful lymphodema physio who I have been seeing since my surgery last year.....I have not had a problem with lymphodema but have had problems with the "cording"...this has now settled. Cording is not the same as "radiation fibrosis syndrome", Sister.....My radiation oncologist said the damage that is done causes shrinking and hardening of the tissue, tendon and muscle tension and inflammation of the underlying cells. It can not be cured only managed in regards the pain. He also told me that only 2% of women get this. I just wondered if having the rest of my breast removed and all the necrosis removed, would it make a difference....I will have to ask my oncologist and surgeon about that. Thanks again for your input  :)
  • lrb_03lrb_03 Member Posts: 1,201
    @Angel61, I, too, was told only a very small number of patients get fibrosis. I do "manage" it. Check with your surgeon and oncologist, but my feeling is that they wouldn't be able to remove all the fibrosed tissue. A large part of my pec muscle is fibrosed, so I don't think they'd remove that. Luckily, it's the least painful, really, just limitting in the way I can move my arm 🙄
  • Angel61Angel61 Member Posts: 22
    That's a relief to hear you are managing this horrible thing Irb_03.....I don't like the pain and the discomfort especially after I have done my housework or gardening....Anyway I will still ask my Drs what they think can be done in regards to removing this tissue.....I can only ask :smile:)

  • PadleyPadley Member Posts: 7
    Hi folks. Got lots of sympathy, things can suck for sure, we get awful diagnosis, months of feeling ropey from treatment, and then you think - great, got through that, now can I get on with my life ?

    Yes of course ....  but .....it's just not back to normal ......

    Just seen physio, got lymphoedema in my breast, lingering neuropathy in my toes and fingers, (chemo finished12 m ago) and now..... likely fibrosis in ribs just underneath breast due to RT (finished 9 months ago). Of course I read that these (might) be an issue, but heck, do I have to have all three ?? 😊. However, got to say I am still alive, expecting a granddaughter on Christmas Day and well... lucky enough so far that simple OTC painkillers work well. And... relieved because there was me thinking metastases in bone or lung. Phew 😅. Mind you, I might think a little differently if I were younger and my original diagnosis wasn't quite so drastic.
  • MissyMacMissyMac Member Posts: 5
    Hi all, I’m new to this group. I want to thank you for sharing your stories, it has made my journey a little easier. I was diagnosed on 20th Sept. and have had 2 surgeries to remove 4 tumours. The largest was a 3.5cm lobular.  They removed a few lymph nodes and the sentinel node too, they were all clear.  I still have quite a large pocket of fluid near the second incision site.

    Could I ask for some advice?  I’m 11 treatments into Radiation and, from the sounds of your descriptions, I could be developing radiation fibrosis.  I have a tightening/burning feeling from my armpit to my nipple when I raise my arm and some random stabbing pains in my breast and underarm, just out of the blue.  The fluid pocket is very hard now too. Should I mention this to my doctor? Is it likely that it will worsen, given I have another 15 treatments to go?

    many thanks!
  • SisterSister Adelaide Hills, SAMember Posts: 4,588
    Welcome @MissyMac Do mention it to your doctor.  Always good to make sure that they are aware of everything.  I developed cording after surgery so I have been having laser, etc treatment at a specialist physio since then.  I finished rads in September, but the physio now thinks I'm showing signs of fibrosis as well so is working on that.  If you tell us your general location, someone may be able to advise of a good oncology physio near you.

    I'm glad that you have found this forum and that it has helped you get through this.
  • MissyMacMissyMac Member Posts: 5
    Thanks @Sister. I will mention it tomorrow.  I have a double dose so I can avoid having my final treatment on Christmas Eve. I’m in Newcastle, NSW.  I actually asked my GP to refer me to a therapist who can write an Exercise program for me, taking my current circumstances into consideration, so they might be able to recommend someone too.

    i appreciate your help!  Many thanks!
  • Chelley59Chelley59 Gawler SAMember Posts: 55
    My breast surgeon told me that radiothereapy can change the shape of the breast...has anyone experienced this?
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