Hi. I had a lumpectomy on my right breast last May and five days of radiotherapy in June. My skin is very pale and it’s still possible to see the slightly darker skin where I was zapped in some places. I’ve been taking Letrozole since August. In mid-December I had a mammogram and ultrasound on both breasts ahead of schedule (it was supposed to be this April), as I had some lumpy areas in the left breast I was concerned about. Fortunately everything looked ok in both breasts. Over the last two weeks I’ve noticed a red/purple area of what looks like broken skin and also bruising along the inside curve of my right breast and it seems to roughly follow the outside line of where the radiotherapy went. I looked at a photo I had taken of myself a week before my mammogram in December and I can see that the red marks/bruises were very faintly there then, but not distinct enough that I noticed them. I have an appointment arranged with the hospital next week, but I’m very worried about what these increasing marks might mean. The radiated breast feels a little warm and slightly larger, but I think it may have been like that since the surgery and radiotherapy, but now I’m paying attention to it. I’ve been doing my pre-radiotherapy exercises daily, as I feel like I’m stiffening up inside and around the breast. It’s uncomfortable to sleep on the right breast side lately, but it has never been particularly comfortable to do so since surgery. I was wondering whether it was possible for radiotherapy to have late side effects like these: red/purple marks and bruising, slight warmth, feeling slightly bigger and stiffness. I had baffling dermatological issues several months before I was diagnosed with breast cancer and it was thought that it was probably due to lack of oestrogen. I wonder if that could be what has happened or perhaps having the mammogram sooner than expected has bruised the skin? I just wondered if anyone has had any skin issues several months after radiotherapy? Sorry for the rambling post. I’m very nervous. Thanks.
Hi @sam1
I finished radiotherapy on both boobs a year ago and still have tenderness in the chest area. I did a scar workshop with a charity and the lady who had also had BC herself and been a cancer rehabilitation therapist said radiotherapy is the gift that keeps on giving and that some symptoms can continue for months, develop weeks, months or years later. I didn’t get much redness during or after radiotherapy but I have noticed a change in the skin over the year, red blotchy/mottled with more veins showing through, but nothing stands out for me to get checked.
I live in Wales and there is no support apart from physio (I went to one who didn’t know much about cancer treatment so pushed to see a cancer physio which has been more successful). Across the border in North Bristol and South Gloucestershire there is a ‘Late Effects Radiotherapy’ service that is a self referral. I’m wondering if something like that may be available in your area.
I have also continued with my post surgery exercises as I was told it can help less lymphoedema and stretch the muscles, ligaments and tendons in arms and shoulders. I massage the whole chest area including the armpits and the bra line as well as manual lymphatic drainage once a week as advised by the lymphoedema clinic for prevention. I swim once a week, doing front crawl and back stroke to stretch lengthways and breast stroke widthways.
I see you are seeing your team next week and hopefully they will take a look and give you some advice or refer you for relevant help.
Hi.
What you’re going through sounds very similar to me too. I had lumpectomy and lymph nodes removed last May and on Letrozole now. The inner side of my breast has swelling and pock marks and seems larger than it was after the operation. I also have a ‘suntan’ underneath. I asked the consultant about it and when they did an ultrasound, I have lymphoedema in the breast and underarm so I now have an appointment with the clinic to see what I need, and exercises specifically for lymphoedema to do. Strangely there’s no swelling in my lower arm at all.
My support nurse and the Prehabilitation team have been great and I’m now having sessions with the occupational therapist to help with the fatigue and coping with side effects and also been referred to the national exercise referral scheme. It may be worth talking to your support team for more advice.
How are you getting on with the Letrozole? x
Thanks so much for your helpful reply. x
Thanks for your reply. The Letrozole is tolerable (fingers crossed) so far, but I’m counting down the months (years!). How’s it going for you? x
I thought it was going ok to begin but 3 months in I started getting awful joint pain in my knees and fatigue, and recently my back and shoulders have been aching like mad too. I spoke to the oncologist back in December and we agreed to try another two months before deciding if I should have a Letrozole holiday and either go back on it or change to something else. My next appointment is on Wednesday this week. I’m not sure if I should just put up with the side effects or risk different ones or worse ones on something else.
It seem like the end of treatment is a long way away at the moment doesn’t it? It’ll probably feel like it’s flown by when we look back on it.
All the best for your treatment Xx
Good luck with whatever you decide to do. I hope your side effects settle down. Best wishes. x
I’ve been on Letrozole for a year and have terrible joint and muscle aches, fatigue as well as hot flushes and vaginal dryness. I have been prescribed painkillers and vaginal oestrogen (lowest dose). I tried Fezolinetant (Veoza) but it was private prescription and not on the NHS anytime soon, this worked really well for hot flushes and took most of them away. It became too expensive so I now have Oxybutynin which is eventually helping but not as effective as the Fezolinetant. I’m under a menopause clinic.
I also had a lot of shoulder and neck pain, had MRI which was clear as far as cancer but found two bulging discs, which is common as we age. I never noticed it before my diagnosis so am wondering if the Letrozole makes it worse.
I have a call with my oncology team soon and will be asking for a 4/6 week break to see if it helps with the aches and pains.
Hi . I had 5 sessions radiotherapy in May and by end of August I had swollen breast , a bit pink , heavy . It was my physio who picked up on it .
It was breast edema but it has improved , no swelling , still a bit of pitting and a bit firmer than my good boob .
I saw a lymph specialist privately .
Having radiotherapy is akin to having a red hot frying pan on your breast .
The fluid channels constrict and the lymph can’t get around , it pools , hence the edema .
Keep moving , any kind of exercise is good . She said swimming but I hate it !
Rebounding too .
Lymphodema society have massage videos
Keep a healthy weight .
Do your arm exercises each day .
Thx tightening is post surgery scar tissue / radiotherapy fibrosis .
Can happen for years afterwards .
I massage my scar to loosen the lumpy tissue .
Also , breathing exercises .
I was in major panic at first but it’s just something I live with now .
I’d ask to see your BCN to get it checks out for reassurance .,
Thanks for your reply. That’s helpful advice. x
Hello @sam1 ! Great you are doing the exercises. Keep on doing them: when I stopped (because I thought I was better) I then got cording. So it’s worth keeping as active as possible, especially stretching against the pain and stiffness. You were wondering whether can radiotherapy have late side effects. Although from what people say on this site, I think some people get away with few problems, I’ve had plenty. Like you, I have very fair skin. I’ve had massage therapy to deal with the hard flesh that resulted from surgery (?) or radiotherapy (? who knows). In my case the skin went black, as well as hard, and I thought I was dying. My specialist cancer physio (find her at the charity called Future Dreams, in London) says she thinks everyone should get access to massage services after surgery and radiotherapy. She normally works for private practice, and says it is offered as standard for people who are paying private fees. Don’t worry. The radiated breast will feel hot and stiff, and uncomfortable. But that is ‘normal’. Mine is now, after a year and a half: and I had the same days (5) as you. Apparently, this can often happen, even many years later. It’s not pleasant, obvs. Whether or not we should question this new ‘normal’ I don’t know - they are rolling the RT that used to take 5 weeks or more into five days. Higher intensity doses. Massage really helps, even though it is uncomfortable, given your surgery. I’m not dead yet…
@skysurfer Your post resonates with me and my situation. I finished 5 days high dose radiotheraphy a year ago after chemo. I still have ongoing issues and took a while to get the cancer physio I needed. I agree the massages should be for everyone. I was told to do stretches after surgery but nothing about massage which I think is wrong.
I also developed cording late on, it was diagnosed in November last year after complaining about it from a couple of weeks after radiotherapy.
The cancer physio gets hands on, where as my local physio. didn’t want to go near the boob or surrounding area. She demonstrated the boob massage on herself but massages all the surrounding areas. The pain and discomfort has improved but not gone away. The cancer physio also explained more about how chemo after surgery then radiotherapy has an impact on healing and that we think we should be better but it can take a long time, so be kind to yourself.
Hi there @naughty_boob. Thanks for your message. We’ve got to just keep hanging on in there! I do wish there was a sort of ‘survival pack’ they’d give you to read, which included the truth that radiotherapy effects go on longer than 6-8 weeks. That’s what the Macmillan leaflets say, so when I got black skin and a volcano of heat about 6 months later, I was really shocked and frantic with worry. I’m really glad you found your way to a proper cancer physio. I can honestly say that mine was an angel; perhaps we’ve found the same person! Good luck, and big hugs.
Thank you for your message. The late changes you experienced after radiotherapy must have been alarming. Did it take long for the skin to lighten up? The massage therapy sounds like a good idea. I assumed that the hard area in the operated/radiated breast was here to stay, but maybe it can be softened up? Thanks again for your reply.