Hi all…not even sure this is in the right category but can anyone please tell me if they have the same as me? since finishing rads 9 months ago and a lumpectomy a year ago my arm has been getting steadily worse so much so I now get shooting pains down the full length of it even with the slightest movement. I swim, I do yoga once a week and I exercise, I am getting to the point where my arm is virtually useless, even grabbing a tin of beans out of the cupboard is extremely painful…Any info please anybody…thank you
Hi Baby4, I finished Rads last November, since Christmas my arm has got gradually worse, sounds very similar to you. I am still having physio, but I am struggling to do a lot, reaching up or getting dressed are difficult. My physio thinks I have damaged a tendon in my shoulder which means I have trouble with rotating my arm,
Perhaps you should seek some help from your gp to see a physio,I have found taking ibuprofen helps too.
Hope that helps.
Jean.
Hi , me too unfortunately.
I had rads last august, and since november have had pains in the arm/ribs/breast.
I feel the arm pain on reaching up for things, pulling clothes off over my head, sometimes changing gear in the car.
I cannot pull shut the car boot with my affected arm, and even struggle with stiff door handles.
Take care,
xxx
Me too. Could it be ‘cording?’ That sends a shooting pain down your arm, and feels like you have a tight, short cord in your arm, restricting your movement as you extend it. It comes and goes, but mine certainly flared up some months after rads. I see a physio now, and the simple exercises she has given me have really helped.
Best of luck x
Hi all
Started rads 24th feb, my under arm feels numb, doing exersises, that helps for half hr then have to do more, so do i keep doing them even on bus going to hosp,dont cope well with pain, iam such a wimp.
yvonne xx
Thank you everybody for your thoughts, I am happy to know I am not on my own with this. I have constant thoughts of lymphodema, although I dont have any swelling but it does make you paranoid and thinking all sorts…
Hi baby4 and all
I too have bad arm pain. Had mx and total lymph node clearance last year and since rads finished in oct have started getting bad arm pain which has deteriorated so much I can’t put my bra on now the way I used to and have constant pain which gets worse with stretching etc.
BUT glad to hear that others have this too I was thinking it had spread to my arm now as it is in m hip. I have more scans coming up in march so was leavin it til then .
I will contact my doc now to see I I can get physio.
Good luck all
Magda
Hi Ladies, I too am suffering with underarm, rib and arm pain. Had Mx,total clearance,chemo,rads etc… Had an appointment with my onc last week and he said it is probably internal scarring from the op and rads. Might be worth having a chat with your onc x
I am amazed how many are having a similar problem, my physio is treating me but she said she doesn’t think it is surgery/rads related , now I will tell her others have same problem.
Thanks girls x
I think, when we have rads, everyone concentrates on the immediate effects like skin damage. I think these long term issues are not addressed because, basically, the radiotherapy staff do not see us at this stage and therefore dont get the experience of the longer-term issues.
The power of rads is often under estimated. The doctors skim over it, I dont think they appreciate how debilitating these pains and weakness can be, BUT I would rather feel like this and have all the nasty cells zapped!!!
Truddles xx
Hi all,
I was pretty much fully recovered from surgery at my 5 week point when RADS began. No pain, movement normal etc. I did develop Mondor’s cording across my breast which was uncomfortable but no probs really.
I finished RADS in November, since then it has become increasingly worse. The last month has been very noticeable. Turning steering wheel was first thing I noticed. Then my whole boob started to ache and swelled up. New cording stretching to collar bone and swelling at side below armpit too (almost feeling like post surgery again!)I confess that I fished out my hospital co codamol because of the pain.
Part of the swelling will be due to my hormones but only ‘bad’ boob affected so next time it flares I’m going to ring my BCN.
Glad to hear it’s not just me. Get tired of hearing everything is ‘normal’ when I don’t know what normal is.
Carolyn x
Hi all,
Iam 8 days into RT, the numbness and tightness have started, its not very nice,even do my exercises in changing room after RT,and every half hr on the half hr, its getting very boring, and to think some of u are still in pain months down the line.seems doing exercises are not enough to stop this, but what else should we be doing to combat this.Women years ago must have complained of these same symptoms, so we would think that there would be more available to us now.?
Got to go my half hr is up lol
Yvonne xxx
I agree with Truddles - my impression has been that everyone is encouraged to have rads and keep their breasts without advice about possible future problems. The possible long term effects are glossed over. I chose a mastectomy against their advice because I already have spinal damage from previous rads 15 years ago. I wasn’t warned about that and now nobody wants to know, there is no help.
Of course, age and how “attached” you are to your breasts has to be taken into account, there is no one right answer for everyone. But the hospital approach seemed very much like a conveyor belt with no regard for the individual’s previous experience and concerns about the future effects. My onc stated that nobody gets bad side effects anymore and didn’t want to discuss it further. I am at a loss to explain this attitude.
It’s the worst dilemma I have ever had to face, but I made the right choice for ME.
I do hope everyone suffering like this will be taken notice of and helped.
Kathy
Baby4 - I have mild lymphodema and what you’re describing doesn’t sound much like it to me. It’s very unusual for lymphodema to actually be painful according to my nurse specialist. I had tenderness, a feeling of tightness on the skin and a small amount of swelling.
I don’t know much about cording but I’ve seen postings on here about that and so that could be a possibility.
The other thing is it could be related to your shoulder and the same for some of the other women who’ve been posting. I’ve had a lot of shoulder problems since my treatment which finished over 2 years ago (mx, chemo and rads) and I’m having physio.
After a lot of treatment I’m now seeing one privately who is amazing and specialises in chronic pain. She saw straight away that I was holding my shoulder up and in when I was walking and sitting and not a single physio had noticed before. Just making sure I don’t do that has reduced the pain dramatically.
But there are lots of things that can be shoulder related such as a frozen shoulder which is also not uncommon after treatment. This link might help:
bbc.co.uk/health/physical_health/conditions/frozenshoulder.shtml
I would definitely advise seeing a doctor or a physio. The longer something is left the longer it may take to treat.
Hope things improve for your soon.
Elinda x
Echium…I absolutely agree with you. I do feel to a large extent we are treated like we are on a conveyor belt with the long term side effects merely glossed over and treated with total disregard and almost disbelief. I have mentioned my pain to my bc nurse and onc, she seems hardly concerned. I have very limited movement and am in pain 24/7. Wearing a bra is completely impossible and in anycase I couldnt even fasten it as I can barely move my arm to get my clothes over my head as it is…this really makes me angry…grrrrrrrr…I have asked for physio so I shall wait and see…its comforting but very sad too to know that others are in the situation as myself…good luck to everyone
Baby4 - you need to get a definite referral for a physio assessment and you may need to be quite pushy about it. I understand that there are certain movements or lack of movements that make diagnosing a frozen shoulder quite straightforward.
If you’re not getting any joy through your Onc or BCN, then try your GP. It might be worth ringing the helpline to get their advice.
It may relate to the rads but equally it might relate to the surgery or be completely coincidental. Whatever the reason, you need some help to get your arm movement better and the pain reduced.
If you can afford it, you could go and have a private physio assessment so that at least you know what you’re dealing with.
Hope you get help soon, Elinda x
Baby4 - I agree this sounds very much like a frozen shoulder which I had some years ago, out of the blue. It’s very painful and the arm just won’t move up very much. If it is, It WIll get better slowly and I would recommend painkillers like Tramadol if you need something strong.
From what I read, I am not sure physio will necessarily help something that will get better anyway. When my second shoulder started to go, I quickly made a private appt. with a doctor who gave me a steroid injection into the shoulder and that really shortened the recovery time.
Please try not to panic panic about it being related to rads, it is most likely a coincidence. The nerve damage I have from rads took many years to progress and is relatively painless - I just have declining leg function.
Hope I didn’t upset you, I just get a bit annoyed at times with the lack of understanding from the docs I have seen. It’s like they don’t want to know and don’t care. I know in the States there are clinics devoted to helping people in my situation.
I do hope you get a diagnosis and start to get better soon - I really feel for you.
Best,
Kathy
The thing is you do need a diagnosis though and I think a physio is probably the best person to do that?
My physio had a frozen shoulder and said that she found acupuncture to be the best thing. I was surprised to find that our hospital physio dept does do acupuncture which is very specific to the area of pain and is done by the senior physios.
Elinda x
Hi, just bumping this thread up, I went for my physio again today, I have had a bad shoulder now since Rads finished, she has finally said today she has seen several ladies now with a ‘frozen shoulder’ after rads. I now have to have a steriod injection in my surgery arm, it’s not ideal but the best option.Initially she was adamant it was not related to Radiotherapy, I hope now anyone else presenting with this problem gets taken seriously.
Jean
Strange the number of people being told their “frozen shoulder” is nothing to do with rads! My pain matches with what a lot of you are saying - weakness & pain in my left shoulder and arm following radiation therapy a year ago. I also have a lot of pain in the ribs and chest area where the radiotherapy was targetted. My oncologist just says “well you were told that this might happen”…I wasn’t! I was warned about skin soreness, not about pain that affects day to day life months afterwards!!
My GP has given me Gabapentin, but it has no effect, so he is now referring me to a pain management clinic. It’s very difficult to put the whole thing behind me until the pain has gone, and I’m also worried about whether it will affect the reconstruction that I was hoping to have later this year.
Oh well, thanks for letting me rant…back to work now!!