Hi, I have had lumpectomy surgery 6 weeks ago, successful removal and clear lymph nodes. The oncologist said I am low risk of recurrence. I will be invited for 5 days radiotherapy at some point. I have read the possible side effects and am concerned about fatigue mainly especially anything long term as I am very active particularly with swimming. I will have an annual mammogram as extra insurance. I had no complications or pain post surgery and was back to driving within a week and swimming after four weeks. Has anyone out there decided against radiotherapy or had it with no or minor side effects please?
Hi @Supernan
I just wanted to say that I did have some fatigue and some redness / itching after radiotherapy last year . I know my fatigue was prolonged by the family problems I was having at the time and I know of people who didn’t have fatigue or only for a few days .
I am a keen open water swimmer and even with the fatigue I was able to start gentle swimming 7 weeks afterwards ( though I was still having an odd day of fatigue at that stage) .I’m not a pool swimmer but I think I would have been able to restart in the pool a bit sooner than that. The Radiotherapy team advised me to avoid swimming of any kind for 4 weeks to allow the skin to recover.
If you go for radio it’s important to do the post- surgery exercises and moisturise well . I’ve been told that radio continues to work in the body for up to 6 years so I decided it was worth it - I’m glad I did as I abandoned hormone therapy due to side effects ( that might not turn out to be the right decision but it’s the one I made ).
I’d advise you to fully discuss it before making your decision, I haven’t had any lasting ill effects from radio and the treatment wasn’t unpleasant .
Take care
Joanne x
Hi, thanks for your reply. I think I’ve already decided not to go with the Tamoxifen as have already been through the menopause with lots of side effects and don’t want those symptoms again. I feel I ought to go with the radio as a precaution so your reply is a great part of my research. As I haven’t felt ill at any time with no symptoms prior and no pain to speak of post surgery I didn’t want to then get a load of side effects with the radio. Thanks again?
Hi @Supernan I also had the hyperfractionated course of rads over 5 days, last November. I found it to be the easiest bit of all the treatment and had no skin breakdown and only about 10 days of fatigue. I had no qualms about having radiotherapy as it was explained to me that surgery was the most effective treatment, followed by rads, followed by endocrine treatment. The histology of my tumour was Stage 1 Grade 1 ER+ PR+ and HER- so not a high risk of recurrence. However I am aware of two women who had the same histology who quickly went on to get metastatic cancer which frighten the bejassus out of me. Guess it depends on how risk averse you are. I am taking Letrozole too but may well not finish the full 5 years, I shall suck it and see. It’s all a gamble ultimately.
Hi, thanks for those thoughts. A few symptoms for a short while does seem a price worth paying.
Hi again @Supernan
Following what Tigress said about hormone therapy , I wasn’t trying to suggest that it should be an radio or HT situation .I was thinking a little along those lines for myself only because my cancer as well as being S1 G1 Er+PR+ and HER- was tubular which rarely spreads outside of the breast . My Surgeon said that if I didn’t get along with HT he felt it would be reasonable to stop it. I gave it a go for 4+ months - I was on Anastrozole . I’ve since discussed it with a BCN who felt my decision to stop was reasonable as well . I’m lucky to be in this position but that doesn’t mean I couldn’t get another kind of ER+ cancer which HT should protect from .
So to sum up I would discuss it with your treatment team . We moan about HT a lot on here because this is a safe place to have a rant / help each other but a lot of women take it without having significant side effects .
Take care
Joanne. X
Morning. I had my surgery 11 weeks ago lumpectomy for grade 1 er+ no lymph node removed and clear. I will be starting my radiotherapy this Thursday. But just wanted to say about tamoxifen. I had previously been through menopause and was 18months into HRT when breast cancer was found under routine mamogram. I am one month into my tamoxifen and although I have had little bursts of anxiety (literally about an hour) on Two separate occasions, weird metallic taste one day, I actually don’t have any effects of the tamoxifen apart from hot flushes that are not unbearable. I was most worried about the HT but for me the hot flushes are a small price to pay for a little extra piece of mind x
Hi @JoanneN I don’t think you implied a choice between either Rads or HT but in fact I am aware through talking to women both at my radiotherapy clinic and at the local Maggies, that oncologists have recommended to some people that they should have radiotherapy in case HT isn’t tolerated, which I inferred your point to be. The one thing I’ve learned is that there are as many variables in treatment as there are people to be treated!
I’ve met a number of women living with secondaries and I know myself well enough at 67 to know that I could never be as optimistic and brave as they are. So that’s what drives my decision making. If I knew I could have five or ten good years before succumbing to recurrence, I’d give up the Letrozole this instant but now knowing of two women who only had a few months before it hit them - mainly because the cells must have spread well before the primaries were discovered and treated - I just can’t risk it. They now face much worse treatment than the one I’m on so I suppose that’s why I promote a long term view. Nothing is ever guaranteed though, every permutation of outcome could apply to each of us. Endocrine treatment can be tough for many, but not all, women so I completely understand the choice you have made. Your bravery in taking that decision means it deserves to be successful.
Hi, thanks for your response. I was told by my oncologist that I wouldn’t start radiotherapy treatment for 24 weeks from diagnosis at QA Portsmouth. A friend I made going through the same process at the same time is having hers within 9 weeks from diagnosis at the same hospital. At first I assumed the long wait was due to backlog of cases but it seems not. Is it the case that lower risk can wait longer as they’ve said not to start Tamoxifen until after radiotherapy?
Hi @Supernan all I can tell you is what happened to me last autumn and that is I had a small IDC with DCIS amounting to 14mm, stage 1, Grade 1, Er+8/8 PR+6/8 HER-. In surgery I had clear margins, no spread to lymphs and no LVI. So a good outcome according to the surgeon. I waited 10 weeks from surgery for 5 sessions of rads. This equates to 16 weeks between diagnosis and radiotherapy. I had started endocrine treatment (Letrozole) two weeks before radiotherapy. In talking to others throughout the process, this timing seemed fairly typical.
My advice is, if you haven’t already, call the Breast Cancer Now nurses on the number at the top of the page as they will be able to advise better than any of us. I would say, however, if your MDT is ok with this timing, then it will be fine. It’s just an absolute bummer for you as now you have made the decision to proceed, no doubt you just want to get on with it.
Thanks so much for responding. I will give them a ring.
Hmm … I should contact your BCN and see if you can get clarification . You could always ring the helpline here as well and ask if there’s been a change to the pathway. It’s definitely not due to backlog ?
Did your Oncologist mean date of diagnosis from your surgery results or from your clinic appointment when BC was originally diagnosed ?
From my own experience and having contributed to / read some threads re radiotherapy on here that seems a longer than usual wait and I don’t know why you wouldn’t be allowed to start Tamoxifen in the meantime. In my area the hormone therapy was already prescribed by the surgical team before we even got to Oncology. It was also my experience that the Oncologist good as she was actually didn’t know everything about the radiotherapy and I think it’s the surgical team who refer you for that as well not the Oncologist so I would get in touch with them via your BCN . You could also check with your GP as to whether they’ve received instructions to prescribe you a hormone therapy.
Joanne x
Hi Supernan,
Like you i have had a lumpectomy and I too am very active, I started scuba diving again about 2 and half weeks after my surgery. I had my 1st radiotherapy today so I can keep you posted if you like? I am snorkeling with blue sharks in Plymouth on 5th August so I need to be ok ?
Hi, it would be great to see how you get on with your sessions thanks. I’ve been told swimming will be out for another 4 weeks after radiotherapy. I’ve left a messages for breast support nurse to ring me to see if she can find out why my wait is so long for RT compared to others. I realise everyone is different though. Good luck!
I had my lumpectomy surgery and Radiotherapy two years ago now and can say that I wouldn’t have considered not having the Radiotherapy. It is what kills any rogue cells that might be lingering. The Radiotherapy did not impact my life at all and I had 10 sessions. A little redness started after five but nothing to worry about. I was back to sea swimming as soon as my scar had healed. The Radiotherapy didn’t impact it at all. Indeed, I think the cold water probably helped. I do have fatigue now but that is mainly due to the hormone therapy I am on and will continue for another 3 years. In spite of the fatigue it causes, I would not consider not taking it as it gives me that extra change of survival but the radiotherapy was absolutely vital in my opinion.
Hi,
I had surgery for DCIS (10cm), and it was recommended that I have 5 radiotherapy sessions. I didn’t want to go through radiotherapy and I was given a lot of time to decide. My pathology report stated there was presence of necrosis, so between that and the large size I decided to go ahead with it.
I seriously regret my decision, and wished I had just waited for my next scan. I have a lot of pain in my arm and rib area, and find it difficult to move my arm without feeling as if something is about to tear. I’ve had my final post-treatment appointments with the breast surgeon and radiation oncologist, where I told them about the pain. Neither were able to offer any help, other than use NSAID gel. I was hoping for some advice on how to treat the radiation damaged tissue, other than what I was already doing, but the focus seems to be on treatment, and not in any way on post treatment side effects.
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Hi @Arran
So sorry to hear that you’re dealing with this. Have you tried contacting the Helpline to see if they can help . Forgive me if you’ve have tried this already but have you spoken to your GP ? There are other options for dealing with persistent pain than NSAIDS . Anti - depressants can help some people , not because of their anti- depressant effect but because they desensitise the nerve endings. My partner was on Amitryptylline for a few weeks for stubborn head and neck pain following a head injury and it did help him . I know quite a few people who have been helped with acupuncture also.You’re right about the emphasis being on treatment - my experience was that any problems I had with my treatment ( Anastrozole was the problem ) were spoken about in language that made them sound like a mild nuisance which was not my experience. You may need to pester everyone you can if you want to get help. - it’s not fair but there it is. Also had you considered speaking to MacMillan - there may be some services in your area which might help.
Take care
Joanne x
Hi Joanne,
Thanks for your reply.
I’ve been to my gp, who suggested amytryptilene. I’d rather not take a systemic drug to mask the pain, and was hoping for some advice on treating the cause. I found massage helps but I can’t get in deep enough to the rib area.
I like your suggestion of acupuncture so I’ll definitely look into that, thank you.
Take care x
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Hi @Supernan, I realise this post is a few weeks old now and you have possibly made your decision. Just wanted to say my situation was quite similar to yours: lumpectomy in April, clear margins, clear lymph nodes, no LVI. I was strongly advised to have radiotherapy as the next step, the oncologist did not even seem to expect a discussion. I had significant reservations as I am very active too, and was worried about any lung damage. I also have seen close-up what the late effects can be as my mother’s chest was ravaged by radiation after breast cancer. Admittedly this was half a century ago and I do know things have significantly improved, but it is my personal ‘baggage’ that I carry with me. I would have accepted radiotherapy if the cancer had spread to my lymph nodes, but seeing I was lucky that it had not I asked for a mastectomy instead, which would achieve the same (or better) risk reduction as radiotherapy. I had that done at the end of June and have fully recovered and am back to my normal active life. They found more DCIS in the breast so I am very glad I had it removed.
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Hello Arran,
The pain you describe sounds more like that caused by the surgery, not Radiotherapy. You should have been given arm exercises to do after the surgery which really help in stretching out the damaged tissue. It is really important to do the exercises and I am still exercising my arm every day even over two years since my surgery. It really does help. If I don’t exercise for a day, I really notice the stiffening and discomfort the next. Exercise is the only thing that will help you. If you were given exercises to do and have stopped, I would start them again and just keep going.