Radiotherapy ILC

Hi
I have finished radiotherapy on 25th of July. Left chest wall and left collarbone, 40.6 grays in total over 15 sessions. Firstly I have damaged skin on my back? :flushed: Secondly - I feel worse with every day. Fatigue is so bad now I couldn’t make a breakfast. I’ve been send from 111 to oncology emergency number, to gp, from gp back to emergency number.
I’m sooo regretting going through this.
All doctors and radiologists were saying beforehand that I might be a bit tiredšŸ™„. Not a one mention radiation exit tissue damage neither.
Does it get better? Am I the only one who takes this so badly?
Living alone and having zero friends or family doesn’t help.
I feel like loser.
K

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Hello Kate

Sorry to hear that you are struggling with side effects of radiotherapy . I had a lower dose than you but was hit with fatigue 3 days after finishing and didn’t really get out of bed for the next 3 days and though it gradually improved it took nearly 3 months to go completely - BUT it did go . I felt sick and didn’t eat well either for 10 days but food and drink containing ginger helped. I had a very red oedematous breast for a while .
I’m sorry that you have been passed around - that’s disgusting and as a medical professional working in a hospital it infuriates me as a lot of people end up at A+E simply because of the experience you have had being unable to get help elsewhere .

However I would recommend firstly letting your BCN know about your back and if there’s a way to contact your radiotherapy centre for advice that may be an option. Some centres or BCN services provide skin care some don’t but might if you tell them you have a problem - which you do and as it is on your back it’s harder to see and deal with . They may be able to assess you in clinic. I’ve not heard of the skin on the back being affected before but from some posts and info I’ve read I think it can happen . In most GP services skin problems are dealt with by the District Nurse teams and once you get referred to them most people seem to get a good service - at the end of the day it’s a burn and would be something they have dealt with before . If you aren’t feeling up to going to a clinic it might be worse persevering with your surgery .

If you’re struggling to eat try to increase your fluid intake as the radiotherapy can dehydrate you - it may help both your energy levels and your skin .
Oh and you aren’t a loser - hang in there . Not everyone gets fatigue etc. but for those of us that do it’s seems to hit at different times but the effects peak after treatment is finished which is why you are feeling worse now than when you were having it . I saw an improvement after a few days and hope you do too. I found listening to Headspace helpful as well Xx

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Thank you for replying
It’s just if oncologist and radiologist were honest with me from a start I would prepare myself. Mentally and practically.
Did some shopping before, buy extra cat food etc.
Oncologist said it’s just like sunbed, radiologist said I’ll be a bit tired - I didn’t expect to be on my face for days.
I’m angry with myself for trusting them and not doing research like I did before - with double mastectomy and axillary clearance or abemaciclib. I was prepared but I was labelled ā€œchallengingā€ for asking questions, so I decided to let it go this time.
Now I feel like failure, I can’t even handle stupid radiotherapy :slightly_frowning_face:

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Hi @kateunlucky
You’re not a failure radiotheraphy is challenging and can make you feel exhausted /sore , sorry but I don’t think it’s like a sun bed . Unfortunately you haven’t been given the correct advice
Do speak to your breast care nurse tell them how you feel or breast cancer now helpline speak to one of the nurses sometimes just helps to talk to someone
Take care best wishes xx

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I get your disappointment, it can feel like professionals who dish out the treatments, but don’t have experience of it themselves, have played down side-effects. Maybe there’s an element of that as they dont want to put people off treatment, but also side-effects are very individual.
In my timeline I finished radiotherapy back in mid August 2024, but honestly didn’t start feeling like myself and struggled to get through busy 12 hour shifts until May 2025. I didn’t have too much initial skin issues - sore and raw in the bust crease. Didn’t notice any exit effects, but as radiation travels in straight lines, seems logical. I had 48 Grays over 19 fractions. I will say keep up or restart the post op exercises as I developed cording over xmas and again in March, which I feel is down to the rads as only had 1 SLN removed. Still got some breast oedema and have off days where more tired. I wasn’t that bad that I stayed in bed - there was a lot of couch & netflix going on though. Did manage to walk 20000 steps daily on holiday 4 weeks later where I travelled on my own and swam. I found 3-4 months later was the hardest time combined with work and the zapping shooting neuro effects ( gone now). What gets brushed under the carpet? I’d advise anyone who gets extra boosts because ā€œyou are fit enough to take itā€ as code for ā€œbut you’ll probably get some lingering side effects tooā€.

This isn’t a failure on your part it’s recognized side effects that can happen to anyone . I understand your anger with professionals ( even though I am one ) and with yourself for trusting them as I have felt the same - and felt stupid for letting myself be talked into a medical trial for all the wrong reasons but have been able to let go of most of my anger after recovering . I’m not stupid neither are you it’s simply the fact that this disease puts us all in the position where every choice you have to make have whether it’s to have this surgery or that one / have this treatment / don’t have it - they’re all crappy choices and you do the best you can in a bloody hard situation. Xx

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Hi @kateunlucky
Sorry you’re feeling like this. I finished my radiotherapy on 8th July and I feel exhausted every day. I haven’t had any days as bad as you where I couldn’t get up but by the afternoon I just want to lie down (but I have a 2 year old so it’s rough!!). They did mention to me about fatigue though.

In terms of the skin - I didn’t have any issues with my back but my chest was very burnt - the radiotherapy team told me to call them if I had issues with skin, they have clinics for checking in on skin etc post treatment and can give dressings etc. Have you tried contacting the radiotherapy department to see if they offer this service?

Be kind to yourself, you’re absolutely not a loser nor a failure for experiencing side effects! šŸ«¶šŸ» you’ll get there.

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