Has anyone out there had the same ‘long-term’ side effects after BC lumpectomy and 5 days radiotherapy? About 5 months after radiotherapy finished (no side-effects at the time or straight after) I started getting what I can only describe as bruise-like sensitive places on the treated breast. Nothing visible - just felt like I had a load of individual bruises on my breast! They woke me up at night and once I even dreamt I’d broken a rib as I’d been lying on the ‘bruise’ under the breast!
I got to see my surgeon 1 year after surgery and he told me that caffeine was probably the culprit! He could feel small lumps and bumps and explained about how the breast tissue changes with the effects of radiotherapy and that it was now being affected by caffeine. 
Give up all caffeine (even decaf)and in 4 weeks the pain would go!
I gave it up and it took at least 6 weeks but the ‘bruises’ did go. 
I then decided 1 decaf coffee a day wouldn’t do any harm - and it didn’t for a few months, but the bruises came back! So now - NO caffeine! I love my substitute Whole Earth ‘Wake Up’ coffee alternative!
I do still get low level, burning/shooting pains in the breast, and discomfort when lying in bed but I think most of that is down to scar tissue just behind my nipple (bad place!) and under my arm - do we have that for ever???
I am interested in your treatment of stopping all caffeine for this problem. I noticed a month or so ago that my breast seemed to have some tender spots that I am sure I did not have before. I have been trying to decide whether they are a response to radiotherapy or some other cause. I might try cutting out caffeine and seeing if it has any effect.
Thank you for replying…Interesting that you have similar sensitive spots. People I know who have had BC have not had anything like it, but they had the old 3 weeks radiotherapy, so I’m wondering if this is a new symptom of the 5 day regime? The breast care nurses didn’t seem very interested - just came out with the standard symptoms in the book and asked if paracetamol worked.
My surgeon said I should go ‘cold turkey’ and give up caffeine suddenly - warning me about headaches for a few days. He was adamant that 4 weeks would then stop the pains. This method was so that I would clearly see that caffeine was the cause of the pains and that then it was up to me what I wanted to do. It was important that I know the cause of the pains to allay my understandable anxieties.
In fact it wasn’t quite so clear-cut - it took about 6 weeks and it worked very gradually but some spots went and the most sensitive spot got less sensitive - so that I wasn’t constantly aware of the low-level niggle of discomfort! That’s when I thought decaf might be the answer! After a while I realised that the ‘bruises’ were back so it’s back to my Whole Earth substitute - which I carry in a little jar in my handbag!
I’d say it’s well worth a go at giving up caffeine - but you’ll have to give it all up at once! No decaf or Coke or even painkillers with caffeine. Then you’ll know if it’s the culprit! And the experiment is only for a short time!
I wish I’d got more info from my surgeon - for everyone else raises their eyebrows in sceptical surprise when I mention it, but I think at the time I was temporarily in shock at the idea of giving up my morning coffee!! (I’m not without pains in my breast now, but they’re inside the breast and different - maybe nerve damage…Ho hum!)
PLEASE let me know how it goes!?
Just a correction and warning about coffee substitutes….
I started drinking Whole Earth coffee ‘substitute’ and the pains like bruises started to ease off and even go. But like I said, it wasn’t clear cut because some seemed to come back intermittently, and some pains I put down to nerve damage. Turns out the ‘wake up’ version of the Whole Earth drink which contains GUARANA, (which is very nice) has MORE caffeine in it than average coffee!! No wonder the results of my experiment weren’t clear cut! Every so often, when I’ve bought a jar with guarana, I’ve been zapping myself with caffeine again!
I feel so stupid, but to be fair to myself, it isn’t at all clear from the labelling!
Never give up…