Radiotherapy effects or something else?

Hi bobof , I didn’t have quite the same experience but did have effects that I wasn’t expecting. In my case I had the standard (then) 3 weeks of rads. My nipple got sorer and sorer (it was also painful post op, I think from the injection of blue dye which for me was done while I was under the anaesthetic). The skin got the suntan appearance and very red underneath my breast but thankfully didn’t break down. Post rads the nipple stayed very painful and sensitive, and went almost black. Eventually, about 12 weeks after, a big scab came off (I thought the end of my nipple had fallen off! And sorry if TMI!). It felt much better after that though still sensitive. 
Re the armpit pain you are having, I had something similar down the side of my armpit post op - like carpet burn - very painful to touch and even if clothes brushed it. I think it was from nerve damage/ healing. I wonder if rads have stirred that up in your case? 
I had an oncology review, 10 weeks post rads where I asked among other things why my treated breast was now bigger than the other. Turned out to be lympheodema in the breast which is a lesser known side effect of rads. It’s permanent but manageable. Could this maybe be a factor in your case? 
I would contact the rads department to ask to be seen if that’s possible. I think I was told I could do that for a couple of weeks post rads, as they said if the skin did break down, GPs aren’t really used to seeing rads burns so better to come back to them. 
Hope you can get some answers, love and hugs, HFxx

Just to add, I’ve also read here of people who had some kind of contraction of tissue post rads and I think they were shown massage techniques to help with that. But obviously you need advice from a medical professional. Xx

Thank you so much HappyFeet1 - I think I am on the same pathway - my nipple seems to be hardening and changing colour and also permanently sensitive, the pain that is sensitive to touch and I definitely also have some  breast oedema. I really appreciate the details as now I won’t freak (as much) if my nipple turns black and falls off - sounds grim…

Am seeing oncologist this week so will see if can be referred back to radiotherapists. 

Really appreciate the answer as haven’t seen many posts about problems with radiotherapy, so was worrying. 

Love and hugs back to you on this beautiful Spring day xx

Hi bobof , just to add some more detail, and I agree it’s better to hear these stories because you realise that not everyone sails through…. When the big dark scab came off I realised that the nipple was then inverted. Apparently this can happen post op as stuff has been moved around and scooped out, which can pull the nipple inwards. So don’t panic if that happens. I did ask about it at a later appointment (and always better to ask) and this was how they explained it. At one of my follow up mammograms the radiologist pointed it out as an inverted nipple (that wasn’t before) can be a red flag, but I was able to say that it’s just my new normal on that side. And weirdly the whole nipple plus areola subsequently turned almost colourless. All very strange, and worrying at the time. I’ve learned over the years (6 since diagnosis ) that however much of a fusser I feel I am, it’s always better to get it checked. I imagine like me you’re on a self refer standing with the breast clinic for 5 years? That’s been a definite bonus rather than having to go back through the GP. 
Good luck with the oncologist this week . Love and hugs, HFxx

Hi bobof 

I would advise seeking help via your BCN, to be seen by radiotherapy and/or your surgery team.

while I have aches and numbness after my surgery and rads I find it’s mostly the tightness from rads that is annoying, I’ve seen an oncology physio who gave me stretches for my shoulder (above and beyond what I was already doing from the exercises advised from post op) and these, in addition to the massages I’m doing do seem to help the tightness and radiation damage to the tissues, I think it’s called radiotherapy fibrosis. I understand that the after effects of radiotherapy can last at least a year, possibly longer. 

I understand that the numbness (in my case it’s across part of the chest and under my arm where a lot of surgical ‘digging’ was done to remove some of the lymph nodes and any suspect cancerous tissue) will be what I’m left with, together with some adhesions. 

I guess it’s a small price to pay to now being told that I’m in remission. 

Hugs xxx

What an ordeal! So many ‘extras’ to get used to. Thanks for sharing  HappyFeet1  it is so helpful to hear your experience. My nipple was fully moved for my 2 ops and has had some colourless patches ever since. So far not inverted. 
That is another of my questions this week - with all the changes and lumps and bumps, how on earth do we know when things are a red flag. 
Hope you are ok now and thanks again for taking the time to share this. It’s very reassuring xxx

Thanks moomy  - I was hoping it was just ‘settling’ rather than fibrosis but it sounds maybe not - the tightness is weird as it makes it feel like there is a lump in my breast. I had an infection at the end of my scar a couple of weeks before rads  because it had popped open and it took me over 2 weeks to see someone about it. I thought it might be linked to that. Hopefully I will get some answers this week and I will phone the bcns. I have also been planning to look into oxygen therapy which can help radiation tissue repair and fibrosis.
i will feel better once I know what it is and how to manage it -  thanks for sharing your experience xx

Yes, I had lumpiness in the chest areas, one where there was an indent where the bulk of the cancer had sneaked (behind my implant after the first time) and another in an area nearer my armpit. I’d been CT scanned and the report mentioned surgical clips, what I was feeling was apparently scar tissue tightening over some of those clips. I had asked to see the surgery team as when massaging, it was a bit more tender. I gather clips are placed partly to deal with bleeding and partly to aid radiotherapy positioning. So (thought I) it’s not just the 3 tiny tattoos they use to position, it’s surgical clips as well…..

Hugs xxx