I thought I’d got away lightly with radiotherapy - 5 sessions plus 3 boost sessions. This last week (5 months on) I have developed a band of fibrosed tissue underneath my affected breast. On closer examination I have bands of tissue basically outlining what was the radiotherapy target area. It is really painful and feels as if I’ve pulled a muscle in my side. It is agony to cough or sneeze and I can’t sleep on that side. I have transferred care since radiotherapy so have no radiotherapy contacts in Somerset. Just when I thought life might be resuming some normality. Any advice ladies?
Keep exercising. I developed a cord after slacking off at the gym for 2 weeks over xmas, did a stretch after a hot shower and snapped it - very painful. Could move better after though, so now I stretch daily and dont miss a week at the gym. If its more the tissues within the breast, I massage twice a day to break down the thickened orange-peel skin that developed. 6 months on for me, I still get differing symptoms, sometimes pins and needles in hand, or general arm acheyness ( no arm oedema, just breast). I did have 19 fractions in all, so more than youself in total. Todays new one, while busy at work, was a burning sensation where the tumour was. Every day can bring something new. Radiotherapy is the gift that keeps on giving, yet literature about it tends to play down long term effects to my mind.
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If you go and see your GP you should be able to get a referral to where your nearest radiotherapy department is. Good luck. X
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Give your breast care nurse or team a call - assuming you have one - you don’t need specific contacts
I’m seeing an onc. physio later this month as my cording is playing. Big thank you for the description of your symptoms as that’s what I’ve recently developed (couldn’t really explain it til I read your post), which was the reason I called my BCN and she requested the appointment for me.
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Glad my description helped! Contacted my oncology nurse and she’s contacting the radiotherapy late effects team for me. Hope all goes well for you
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I also thought that I had radiation fybrosis but after speaking with the radiotherapy department they tell me that if you had a mastectomy it’s highly unlikely that it’s fybrosis as the tissue would have been taken away.
I had my mastectomy mid October and finished radiotherapy on 24th December, I started back at the gym in February, doing pilates and yoga and swimming once a week, the BCN seems to think it might be that I’m doing too much exercise and the pain that I’m feeling are small muscles that are between the ribs.
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@juxined I had a lumpectomy and mammoplasty. I have an appointment at the Late effects team next week, so we shall see. I can actually feel the bands of fibrosed tissue 
I’ve also been hit with radiation fibrosis 5 months after radiotherapy, and now have mild breast and truncal lymphoedema. Here’s my action plan:
Stretching - find some exercises for cording online and stretch everyday…for life…to restore and maintain your range of motion. Jen McKenzie videos are very good.
Physio - get some reassurance & additional exercises from a physio who has experience of breast surgery.
Keep active - big arm movements help. I do pilates, gym work, walking, golf. Swimming also very good but not so keen!
MLD therapist - find a local MLD therapist who can help with fibrosis and scar tissue management as well as lymphoedema, if you have it. I’ve had 3 sessions of deep oscillation therapy and very soft cupping, and my skin is soft and supple again, a real game changer. My scars and the underlying tissues, including my cording, are also now softer.
Massage - The MLD therapist will also teach you some self-massage and skin stretching techniques, or find them online.
Moisturiser - twice a day
It’s important to get the fibrosis under control as it is a causal factor in lymphoedema. If you have one of those too, then there are Self Manual Drainage (SLD) techniques, Tripudio flows and compression garments & pads - I’m really just getting to grips with this bit!
Anyway, hope it helps. It feels like a full-time job to manage it all!
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I saw a consultant radiotherapist this afternoon from the late effects team. So impressed with her. Thinks I have lymphoedema in my boob- who knew, thought you could just get it in arms. She doesn’t think it is fibrosis at all
So basically just fluid- she had a nifty little machine which measured amount of fluid. Hoping that it can be massaged away- showed me how to do it. Also she thinks fascia is all stuck together in my side which deep breathing may release - so have a nifty little contraption to get me deep breathing, some kind of spirometer. Seeing me again in 3 weeks to measure if fluid gone down. So, so helpful. Referred for 3 sessions of hydrotherapy and also suggested acupuncture may help. She also suggested I wear a sports bra all the time, as it’s a kind of compression. I had been massaging, having looked at the online videos, but she said I’d been applying too much pressure. She suggested a baby brush instead!
Interesting, @gromit12 , thanks. I’ll keep those recommendations in mind. I was surprised by the breast lymphoedema - thought it was just arms too. My lymphoedema nurse suggested a small foam paint roller for my trunk, to roll along the bra line to my back.
My fibrosis showed on a PET scan and is in the skin, right lung and through armpit, with cording. Thinking of getting some lumpy foam pads to pop into my bra as it’s supposed to help massage the fibrotic tissue during everyday movement. I wear a sports bra most of the time too as I can’t wear an underwired bra anymore.
My MLD therapist also did some Kinesio taping to help with the lymphatic flows. The whole area felt well-supported and I had less armpit stiffness, but it only lasts 4-5 days before peeling off.
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Hi @juxined ,
I have to say that I think that’s bad advice from your radiotherapy team. I had a mastectomy too and I have confirmed fibrosis in my skin, lung, and through armpit, including cording, from radiotherapy. My armpit skin went blotchy red, so my oncologist ordered several scans including a PET scan to check for recurrence. You could request an ultrasound scan as fibrotic changes in the skin showed up on mine.
My experience is that there isn’t enough knowledge about fibrosis in the hospital teams as they’re dealing with cancer treatment, not the aftermath.
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Hi @limehouse ,
Thanks for this info. I phoned the hospital again and insisted that I get an appointment with the radiotherapy consultant, so will be seeing her in 10 days time, I shall report back.
The area where the drain was has always been tender, I’d have thought that 5 and a half months after surgery it would have started to become less sore, not worse, it’s also really tender all around the area where I had radiotherapy, especially under my arm. I did have cording prior to radiotherapy but exercises seemed to resolve that.
I’m hoping that my consultant is as thorough as yours was and I get to the bottom of what’s causing the tenderness.
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Hi @juxined ,
Good news about the appointment and hope you get some answers. I’ve learned that being proactive is the best course of action - you know your own body and if it feels right or not.
The discomfort you describe does sound very similar to what I experienced (and tbh still do 10 months after radiotherapy). If you do have fibrosis, then the gym, pilates, yoga and swimming you said you’re doing will be helping keep the skin, muscles, ligaments, tendons, nerves and other tissues in the affected area moving and flexible - and if not, then it’s good to do those things anyway!
All the best 
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