I finished my radiotherapy in May last year, and I’m still experiencing pain in the area, like deep bruising. All doctors / nurses say is that it is side effect from radiotherapy, but its starting to get me down now - anyone else had pain for this long after radiotherapy to mastectomy site?
Bump - hopefully someone can help soon xx
Hi Julie
I know where you’re coming from!I finished radiotherapy last April and I still have pain in my arm, neck and collarbone. It started about a month after the last treatment and I’ve had it ever since. I did mention it to the consultant on my visit back in August, but after squeezing my lymphnodes he said I was fine and that it was side effects of rads.
I too feel a bit worried by it, and I thought of mention it to the Oncologist when I see her in February, but on the other hand I don’t want to undergo anymore tests or scans, I seem to have adopted the “head in the sand” attitude and I want to forget this whole mightmare…
I’m still getting pain from rads back in May last year and it got so bad that I am now on Gabapentin. It’s early days to say whether that will help much though because you have to build up to the required dose due to it’s sedating affect. The upside is that it has helped me to sleep better but I am still waiting for the pain to ease.
It’s very frustrating isn’'t it? Being in pain all the time is very enervating and debilitating, it really impacts on quality of life. I would go back to your GP and ask about pain relief and if he/she won’t prescribe anything I’d get in touch with your Breast Care Nurse to see if anything can be arranged via the hospital.
Nymeria x
I finished radiotherapy last august, and have become increasingly stiff and sore in my left shoulder/arm/ ribcage since about a month ago.
Im now starting to feel it when i change gears on the car which is annoying.
I think im going to be a bit like Lazycat and not mention it at my onc appt next week, as I do not want to undergo any scans at this stage, as I had a ‘clear’ bone scan back in november and a recent clear annual mammo.
Truddles xx
Thanks for that, maybe a trip to the GP would be sensible, but you’re right about the head in the sand attitude and I don’t like the thought of being on painkillers all the time. But I do need it to be sorted before I have reconstruction later this year, so I’ll have to do something!
hi all,
i finished rad last june i am still having pain mainly during the night when sleeping my surgeon have said the same it can take months to feel better or it can even take years.
Hello Ladies
I had mastectomy last June and finished rads at the end of september,
i too have bad days when i feel like i have so much presure on my scar and soreness under my arm, i had full clearance too, some days are worse than others, my bcn said its the effects of the radiotherapy but it does get you down especially when you have gone through so much and want to get on with life,
ive recently gone back to nursing on phased hours and had yearly mammagrame which was all clear.
Does anyone else have this feeling? especially when turning over in bed hurts too, all i seem to do it moan,
take care ladies
Donna
x
Hi all
I finished TAC chemo, bilateral mast with right side axillary clearance and rads on that side September 2008. I have permanent pain in my ribs, arm and shoulder on my right, have had various scans, X-Ray, CT and bone scan with all clear. It is always difficult to turn over in bed and really sore in the chest area first thing in the morning, I’ve been told it is a result of the rads and may never go away. OH Joy! It was actually said I should be happy to still be alive, and the treatment had to be harsh to beat big C. But it is a constant reminder, along with strapping my boobs on. Happy Days! However, I am here and I intend to make the most of it. Perhaps my hair might even grow back one day, I live in hopes.
Love to all
Jennie
Hello ladies,
Yes, me too. Finished Rads two months ago and was fine until 3 weeks or so ago. Steadily getting more and more sore, stiff etc. find it hard to sleep on my rads side again just like after op! Ribs, underarm and arm all affected.
Should really get back on with exercises. Even feeling it all pulling when driving now, lol.
Carolyn x
You cannot believe how relieved I am to read these posts. I finished rads on 21st December and for the last couple of weeks have had pain underneath my arm and my back where the shoulder blade is. I also seem to have a lot of swelling. I am constantly rubbing my arm as it is tingling most of the time, I assume due to nerve damage.
Truddles - I am also struggling to change gear in the car. If I move my arm backwards the skin feels so tight and painful.
It is not lack of exercising, as I am doing them 3 times a day. I feel like I am back to square one with the same sensations after ops.
I can’t concentrate on anything but this stupid niggling pain.
Is there anyone out there that can put our minds at rest and tell us it does get better, PLEASE
I have pain in my right neck, shoulder, arm and hand with tingling. I was told by the pain doctor I have added to the seemingly ever growing list of specialists involved in my care that the nerve pain caused by radiation is very difficult to treat. I take morphine pregablin amatadine and paracetamol and amitriptyline. I also apply capsaicin cream and use lidocaine patches and I am still in pain. Definitely better than I was before I started taking the medicines. The downside is I live in a fog, my memory is shocking. I am can’t return to work. I had radiation on the same area before. If I had realised the effects of having more radiation I would have taken my chances and given it a miss. I had all the scans and they were clear. It’s something else to get used to.
It does help to know its not just me! I come on this site most days but rarely post. I never seem to get it quite right.
Not sure if I have a particular point, just felt the need to post.
TillyB
Hello all. I posted quite a bit last year because I was so fed up with this problem. I have tried various things and if you haven’t already seen a physio, perhaps it would help?? I really do think the set up where I am is not helpful, as it took ages to get a physio referral, where other people seem to find it easier.
I had a mx and rads, finished 18 months ago. The whole scar area just swelled right out, terribly painful and tight. I have pain under the armpit, and down my arm caused by cording. I was told this was neuropathic pain caused by damage to a nerve, and scar tissue from radiotherapy. I was on gabapentin for a while. In the morning I feel like someone has stitched my armpit to my chest, so do stretches, and then try to forget about it during the day. It then all gets painful again in the evening (like now!) and I just go to bed. My ribs are tender. It wasn’t what I was expecting, as the advice was all about skin care, and all the other side effects seemed to be vague possibilities. Ha ha. I do think its easier somehow, perhaps I’ve got used to the pain always being there, but I don’t think its going to go away. One big problem was the bra, and it must be better, 'cos I couldn’t tolerate anything at all next to the skin, but now can wear it for work. I hope this has helped. It does get better, but not very quickly, and I made quite a bit of fuss about getting some better pain relief, and seeing a physio which was good. Best wishes. K x
Hi all
I phoned the consulant’s secretary and managed to get an appointment at the end of clinic on Tuesday. I saw the registrar first, who called in the breast care nurse. They didn’t want to blame the pain on the radiotherapy, as that meant they couldn’t really do anything about it, so they called in the consultant for his opinion. He asked a couple of questions, and took a quick look and said “radiation osteitis” which translates as bone inflammation due to radiotherapy. He said I shouldn’t worry, the possibility of it happening should have been explained to me before treatment and that it will probably go away in time, although that time could be years! So at least I have a name for what is making me uncomfortable, and now I just have to find pain killers / anti-inflammatories to manage it!
I agree that all the advice before treatment was about skin care, and I’m sure no one told me about the potential for long term pain. I now have an appointment at the GP to find out what tablets might work.
There seems to be no chance of putting it all behind me when the pain is a constant reminder, but keeping busy helps, so I’d better go and do some work!
This may be a bit of a downer - i finished rads about 4 years ago after WLE, total node clearance and chemo. i am stll in pain and it has got worse not better. Currently on amiltriptaline (spelling?) and co-codamol. i have an appointment with my GP next week because it is really getting me down. this does not seem to a problem that is addressed that often.
It is nice to know that I am not alone although I am sorry that others are going through this.
Good luck to you all - Jacqui
Hi just been “lurking” this evening, as I haven’t posted for quite a while.
I completed my rads last March; and 3 months later developed a persistant pain & occasional shooting pain in my zapped boob.
At the time the registrar told me it was nerve type pain & take regular paracetamol. This sort of worked for a couple of months but following my first annual mammo (not quite an all clear as I was told I had some calcifications(begnin) & they wanted to re-do me in 6 months to be sure).
Anyway after my mammo the shooting pain really kicked in & I ended up going to GP. He put me on Imipramine which is an antidepresant in higher doses. Once in my system it has really helped. I have been pain free for 2 months; since Xmas I have not needed any paracetamols & when I see GP on monday (16th) I hope he will agree for me to gradually come off them. Then we’ll see if nerve pain has reduced or whether it kicks back in.
Take care
Lynne
What lovely advice, Simples,
I am managing without painkillers just now, except for the odd brufen, but its great to know there’s extra help out there if the pain gets worse, im also getting a few shooting pains in the arm/ breast/ ribcage.
Swanie, Still having this problem over 4 years sounds awful though!!
Its so true that you are ‘prepped’ for skin care with rads, but NO-ONE focusses on long term pains, if they focussed more on this, im sure us ladies wouldnt be so psychologically traumatised that these pains are not due to mets
xx
Well i have had a bad day today so glad i came across this thread is interestig reading so thank you all for your infomation i said my OH that it feels like when i had the op and couldn’t understand till i read these comments it is horrid the pain today is not going away!!!
Ho the joys lol.
Well ihave just seen my BCN re awful pain in my breast, underarm and around my rib cage, all since radiotherapy finished end of september 2011. BCN said radiotherapy can do alot of damage and the pain etc may never go. I am due my mamogram soon but didn’t have a date for it so BCN has brought it forward to next week so they can see what is going on in the breast 
x
Hello,
Confession time! Boob was so sore, swollen, tender today that I may have stuffed a cabbage leaf down there whilst I was cooking tea!
Cx