Hi
Have posed a question about my bra problem on another thread. Kind and helpful answers, so in hopes this might catch someone’s eye, here goes.
I’m not getting better from radiotherapy to the chest wall after mastectomy which crossed my armpit and have a number of problems, including cording and lymphoedema (waiting to be seen by specialist service). The scar is puffed up, painful and very hard, i.e. it doesn’t feel like fluid. There’s no discoloration and I didn’t burn except for mildly under my armpit. It’s 4 months since it finished and if anything its getting worse. I have exercised religiously and have good movement, but I feel as if someone has sewn a brick to my chest. Gabapentin is helping the cutting sensation where some lymph nodes were taken, but has not helped at all with the tightness across my chest. Exercise doesn’t seem to be making any difference.
Has anyone had this, and does this swelling eventually go down?
K
Karis - So sorry you are having a hard time. As no-one has replied, I am bumping this up for you but you could try ringing your BCN or the helpline on here. They may be able to help.
Ann x
Thanks. I’ve been told that the effects last months, but not really what that all means for the scar tissue. But as it just getting more hard and swollen, I’m starting to think I’m stuck with this permanently. I haven’t met anyone else who has gone down this route, so anyone who can provide a bit of insight, would be good.
K x
Hi Karis its a long time since I had my rads to my mx/scar area so I think my memories may have faded a bit here but I do remember ladies having problems with cording type se for ages. A lot of them visited the hospice I did too, as a day patients, so they could access their own physio and this for me helped a lot, knowing someone you could see everyweek without being passed around a whole unit and someone who knew what’you’ felt like.
Along with the traditional pyshio wonders the indian head massage and reflexology were good alternative therapies which did a great boost for me so much I went on to learn both therapies.
It doesnt seem too many people who have not reached secondary stage seem to access the Hospice treatments but they are here for everyone and not just the secondary and beyond patients, and their staff are very well informed and welcoming
best of luck Ann B xx
Hi Karis,
Bad news is that 16 months after a bi-lateral I still have the tightness that you describe despite exercising and prolonged Physio.
When I’m tired then I also feel as though sharp blades are cutting in to me where the front of my bra straps would be if I wore one.
Good news is that as long as I’m otherwise occupied, although the tightness is still there, I’ve learnt how to ignore it to a large extent. Amytriptline also helps with the nerve pain.
My Physio and Surgeon have decided that the tightness is due to a couple things. 1. My brain not receiving the messages that it should because I’ve got a lot of nerve damage that’s resulted in a wide band of numbness right across my chest. 2. The actual damage caused to the area from the radiotherapy. Although I wouldn’t really describe the area of the scars as swollen I am def. not flat. It’s all very lumpy, bumpy and not a pretty sight.
Initially I was told that it would all improve with time but it hasn’t and I don’t think that anyone is expecting it to improve any more now.
I don’t want to depress you about the tightness as you may well find that yours does improve but I did want to reassure you that eventually you do learn to live with it if it doesn’t. I think that I actually started to cope better once I accepted that I am probably always going to be like this.
What I still find hard to forgive is that I was never warned about the possible tightness etc. For a long time I blamed myself and when i tried to explain to the BCN I was offered counselling as they obviously thought that it was all in my mind. It was only after I spoke to the Counsellor that she got things moving and I was referred to the Physio who confirmed thaat it was a physical problem. Rant over.
Best of luck
Janail
Hello. It sounds like a very difficult journey through to this stage, and how you cope with this, I don’t know, as just one sore armpit is driving me nuts. Like you, nothing at all was said at any stage. I’m not sure what I’m supposed to be doing with the scar (massage, not massage, exercise more, less??), but the scar would be big enough to put in a bra cup, but can’t wear one!! Just “hurry up and wait” for the effects to wear off or not,as the case may be? I’m hoping someone will reassure me that the radiotherapy swelling will go down,but you’ve given me lots of food for thought about the other situation, just learning to live with it. Thank you! K xx