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Long term effects of radiotherapy

13 REPLIES 13
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Re: Long term effects of radiotherapy

Bless you, am so glad your on the mend. Yes its crap this bc thing just when you think youve got it nailed it sneaks up again. Trying to push it into the cancer box in the back of my head but i think its stuffed full. Just a few more weeks of jumping on it and itll be better. Take care lovely lady xxxxx

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Re: Long term effects of radiotherapy

Suez, I couldn't agree with you more - cancer treatment really is the gift that keeps on giving, isn't it? i had my treatment in 2012/2013, and have logged on to the forum today because of a post-radiotherapy issue with my breast that is now causing a continuing problem.

I burned quite badly under my breast during  the radiotherapy - the area where the breast meets the ribcage - despite using industrial quantities of aloe vera gel (I honestly think the way your skin responds to radiotherapy is genetic, and that nothing you put on your skin will make any difference). It took a long time to heal, but for the next 6 years did not cause me any further problems. Then, about a year ago, I started experiencing soreness under the breast. Google revealed that women with heavy breasts often get sweat rash/yeast infections under the breast, but my other breast was completely unaffected. So I started bathing the affected area mulitple times a day, wearing only cotton bras, and applying antifungal/hydrocortisone cream - all of which intermittently helped, but the soreness kept coming back.

Then, 3 weeks ago, over the course of a day, my breast seemed to undergo a kind of spontanous combustion: at first it was a bit itchy and generally uncomfortable, so I had to take my bra off,  thinking maybe I had become allergic to the detergent, but gradually it hurt more and more and I started to feel quite ill. When I undressed for bed I was horrified to see that the whole breast had turned bright red, and there was clearly something horrible happening. I thought it might be shingles. it never occurred to me it could be radiotherapy related.

We went to A&E first thing in the morning, and as soon as I said to the doctor that I had had radiotherapy on that breast, the response was 'Ah well, there you are then'. There was a soft tissue infection - cellulitis - in the breast, and this is apparently not uncommon in women who have had radiotherapy for breast cancer.

It was explained to me that radiotherapy causes permanent damage to the lymphatic system in the breast tissue, and the lymphatic system is what protects us from infection. i was given very strong antibiotics and told that if they didn't start to work within 3 days, they would admit me to have IV antibiotics.

Happily, the antibiotics did work, and I didn't have to go back, but it took a couple of weeks for the breast to heal completely and look normal again. But it still keeps getting sore underneath, and I am absolutely terrified of getting another serious infection. I did some research in the medical literature, which says that it can be a one off event, or become a chronic problem.

The physical experience of this was very shockiing, and distressing, but it has also really affected me psychologically. In 2012/13 had a lumpectomy, chemo and radiotherapy, and then took Letrozole - Satan's Own aromatase inhibitor - for five unpleasant years. Once I finished taking Letrozole it was wonderful - I finally felt free of the cancer and all the horrible treatments, but now I feel as if it has crept up behind me and gone 'BOO! you didn't think you'd finally escaped, did you?'

I'd finally learned to manage, and live with, the fear of recurrence, but I had no idea that the radiotherapy could have damaged me in a way that would come back and affect me so badly all these years later. i thought I had researched everything about breast cancer treatment and its after effects, but this was something I somehow missed.

Sorry for the long whinge, but I really needed to vent about this. It's made me feel so vulnerable again. I was a bit miffed a couple of months ago when the NHS Coronavirus service informed me that I was medically classed as 'vulnerable' and should stay at home, as I'm not medically 'frail', and go to the gym, and didn't see why having had cancer 7 years ago would make me more vulnerable to the virus, but once I got this infection it struck me that if I had had COVID 19 at the same time it could have been very nasty indeed.

Now I realise that cancer treatment can continue to affect us, long after it finishes, in ways we may not be aware of, and am somewhat chastened and more ready to listen to medical advice.

Anyway, I do realise that in the great scheme of things what has happened to me is not a huge problem, and that I would be dead by now were it not for the cancer treatment, horrible though it was. But I would like to warn people that this is something that could happen one day, so that they might recognise what is happening and seek treatment for such an infection immediately. 

Also, is there anyone out there who has had a similar problem with soreness under the breast, and found an effective way of dealing with it? I would be very grateful for any advice.

 

 

 

 

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Re: Long term effects of radiotherapy

Had chemo and radio post lumpectomy 5 years ago. Now on tamoxifen. Since then have had shortness of breath and become breathless lying on affected side. Recent xray shoed hyperinflation of lungs consisant with copd though gp thinks is related to radiotherapy. Bit fed up as googled pulmonary fibrosis and its grim. Am sure ill feel better in my head next week but atm so fed up with cancer and treatment x

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Re: Long term effects of radiotherapy

So sorry to hear that this was the result of your chat with the oncologist but at least they were very honest with you...when I asked about the side effects of rads my consultant shook his head and said there were none...which I know is b******t! I haven't met the proper onco yet but will be BOMBARDING them with questions before I go through with it...I almost feel a bit sorry for them.

 

Did they mention what kind of radiotherapy would be used and the dosage level? What sort of beam?  Are they aiming for just whole breast radiation or the superclavicular fossa (collarbone) area too?

Could you have externally target APBI (Accelerated Partial Breast Radiation) - doesn't cover the whole breast, focusses on where the tumour was removed.

There are other options such as brachytherapy (one type of APBI) which is a small radioactive seed inserted - you could research this? Some others on the forum have done this, it takes a much quicker time although I don't know the outcomes of long term effects so it could be worth asking.

 

If you are still trying to decide on your surgery option, have they talked to you about IORT? - Interoperative Radiation Therapy? One quick dose whilst you are on the operating table, can MAYBE mean no need for external rads?

 

It's a bit left field but you could also try asking about interstitial laser ablation or cryotherapy (used on skin lesions) - it will depend on size of cancer I think though.

 

I am trying to make similar decision and have been reading up (and getting confused!). I am no expert just determined to be informed.

 

Best of luck in your decision and future health

TS

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Re: Long term effects of radiotherapy

Sadly I have seen the consulting radiologist today who assured me I would definitely have lung damage from the radiotherapy 1cm minimum from top to bottom of lung.  Needs to say I am not happy as I've already got damaged lungs.

 

I said no to chemo because of this risk and now am having to consider saying no to my only other treatment option.  feeling very upset.

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Re: Long term effects of radiotherapy

Hi Leonie

 

Yes I am waiting to see the radiologist to discuss pros and cons and I must read up on the literature too.

 

Regarding my friend you definitely can see she has one breast much smaller than the other, but even in her senior years she tends to wear clinging t shirt tops 😄 and also she really doesn't care that one is noticeably smaller.  The hospital offered her a reduction in the healthy breast to match it but she refused that, I would too I think.

 

That's not to say everyone will have a noticeable difference in size of course.

 

Love to all the brave ladies 🙂Heart

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Re: Long term effects of radiotherapy

Hi Astra,

 

Try not to assume the worst is going to happen. Many women have no side effects to radiotherapy. I was hugely reassured once I spoke to my consultant in charge of radiotherapy. It helped it was a lady. Ask any questions you have to help alleviate the fear and stress.

 

We have to accept that we are never going to look exactly the same as before our ops but we are lucky we only needed lumpectomies. No one but you will see any difference in the size of your boobs as in clothes you won't be able to tell. I bet until she told you you didn't notice any difference in your friend's?

 

I think mine may be permanently tender because I can't stop cradling them and checking everything is 'ok'.......Just glad they are still there! 😊

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Re: Long term effects of radiotherapy

I have a friend who had 5 days a week for  4 weeks about 8 years ago, she found her breast did reduce in size, so she has one noticeable smaller than the other.  I've found that after lumpectomy and not had radiotherapy yet.

 

Also she found she didn't get tired until the end of treatment and that was travelling 1 hour 30 mins each way for each session, she is in her early 70s now.  She has said the breast is still tender to this day.  Have to say my breast is still tender from the surgery coming up 4 weeks ago, I guess its early day yet for me.

 

I am also interested in the risk to lungs as I already have lung damage, I'm not sure what the potential percentage is of getting lung problems after treatment, or down the line.

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Re: Long term effects of radiotherapy

Thanks for posting that. It is very reasuring. That' s the one problem with these forums. Yes they offer huge support in times of need and going through treatment but that means ladies on here are all going through the same scary experience and fears.

 

The ladies who have got through the treatments and been able to get on with their lives don't tend to come on these forums. Yet these statistically are the majority. 

 

It's too easy when you are scared and worried to forget about the majority positive outcomes and instead think only about the negative ones especially when info is so readily available on the internet.. Waiting so long for radiotherapy doesn't help....the gremlins can take over and undermine positivity.

 

But we should be positive. It's amazing what they can do these days compared  to the past and things are getting better all the time. Hence more and more women are surviving breast cancer and leading long and healthy lives afterwards........boosting those positive statistics even more!

 

Look at Kylie Minogue. It's hard to remember she has been through this years ago as she is fifty and amazing! So is that 70 year old lady in the gym 🙂

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Re: Long term effects of radiotherapy

Hi, I was very very worried about long term side effects especially having radiotherapy for Dcis both sides. It now 5 days after and I feel I have my energy back. My skin is still a bit sensitive but is getting better by the day. My throat feels a bit funny but I suppose I was blasted from 2 sides so not unexpected.

 

The important part is that I have chatting to a lady in my gym for a while now, who was 70 last week. She still is very active, goes to the gym and had a lumpectomy after chemo 22 years ago on the left hand side. She is very petite and has very small boobs and refused a mastectomy when she was 47. The reason for the mastectomy was that she couldn’t have the lumpectomy as the lump was too big so she had chemo then lumpectomy then either 5 or 6 weeks radiotherapy on left hand side. Plus 5 years tamoxifen. Now radiotherapy 22 years ago was 50 gray from what I remember. Normally it is now 40 gray unless you need a boost. So much less radiation.

 

She has had no side effects other than a slight hardening of the breast. This lady might be an exception but very reassuring none the less. 

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Re: Long term effects of radiotherapy

Thanks Brumrunner, that is a huge help. I'll have a look at those links.

 

Hope we both do well in our recovery 🙂

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Re: Long term effects of radiotherapy

Hi

I posted this same question a few days ago!  (can you find my other posts I wonder?)

To cut to the chase, I have hauled in a few contacts (I'm a Dr), and it seems the 'view' now is that radioRx is felt to have minimal side effects, that, really, there is no point risking the major surgery of mastectomy.  this has immensely reassured me, and I think I am now much happier proceeding down this route: but, obviously, it is so personal (I keep staring at my boobs in the mirror wondering if I could stomach a mastectomy....).

You might find these articles helpful: https://www.cancernetwork.com/oncology-journal/decision-making-surgical-management-invasive-breast-c... (this is quite medical and detailed, so perhaps consider if you want to read this??). This link is a decision making tool (tbh it didn't tell me anything new, but it is useful as a starting point at least): https://www.researchgate.net/figure/Option-Grid-decision-aid-Breast-cancer-surgery_fig1_310666496 

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Re: Long term effects of radiotherapy

Hi Leonie,

Probably not much help with your question, but I had rads following wle 3 years ago & haven’t had any long term side effects that I am aware of. After the initial redness & some soreness, my boob looked & felt pretty much as it usually did a few weeks after treatment was completed. 

ann x

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Long term effects of radiotherapy

Hi Ladies,

 

Looking for some feedback from ladies who received rads who have had side effects years later e.g. Fibrosis, change in skin texture or hardening or shrinking of breast. BCN nurse assures me rad's these days not as harmful as in past and breathing techniques protect heart......But what about lungs?

 

Trying to decide between having rad's after WLE or mastectomy as concerns about both.

 

Any insight would be appreciated.