Upper arm, neck and shoulder pain

[mrsorangecat]

Hello all, i just wondered how many of you who have had a mastectomy, radiotherapy and take Tamoxifen now have problems with pain in the arm, shoulder and neck area on that side? I'm 4 months post rads and really fed up. Amitriptyline and Zapain helping but just wondered if it will go and at what point, 1 yr, 2 yrs down the line? Thank you for listening xx

[Nixh]

Hi mrsorangecat,

Sorry you're still having pain... I personally don't get any 'constant' pain in my mastectomy arm, (had an auxiliary clearance too) .. occasionally I get some pain, a dull ache sometimes shooting pains...usually if I'm inactive. I play netball and continued through chemo and radio and think this has helped loads with my arm movement. The tamoxifen gives me aching knees and ankles mostly though, occasionally lower back too... I think it targets prior weaknesses unfortunately

You may have a trapped nerve or a form of lymphodema... I would say 4 months is still relatively early, keep doing your exercises and hopefully it will ease, definitely see what your breast nurse says about it, they may be able to offer some therapy to help

[mrsorangecat in reply to Nixh]

Thanks Nixh for your reply. Yes, because its my left arm i know i don't use it as much as I'm right handed. You do well with your netball. I will make more of an effort. It's tight though when i lift my arm, i am massaging the scar to try and help with that. I dont play sport but i am doing my exercises and i do go swimming and do a lot of walking where i try and swing my arms (must look like a nutter! 😉) It does sound like the same pain - a dull ache and sharp shooting pains. Hopefully it will get better in a few months, like you say 4 months is early days. When did you have yours done? iv had lymphoedema ruled out for now, but it could happen at any time nurse said. Physio thought it could be a type of thoracic outlet syndrome but breast surgeon didn't seem to think so. I agree with the Tamoxifen affecting sites with earlier weakness as i had problem with my neck before. I'm going to see GP in a week and I'm going to ask her for a scan just to make sure nothing else happening. Thanks and i hope your aches and pains get better too. H xxx

[Nixh in reply to mrsorangecat]

Yes have to say Netball has been a saviour for me, has definitely kept me sane! I had my original mastectomy and node clearance August 2015 so coming up for 2 years (wow!) had a preventative righthand mastectomy last November, and don't get any pain with that, sometimes a dull ache if I lie on that side too long in bed so think its the node removal that causes the pains for me... Was given Gabapentin for the shooting pains after surgery, this helped a bit but mostly the exercise has helped me most... Swimming is good I imagine, maybe try and use your left hand when cleaning and tidying (wax on wax off lol) Glad no lymphoedema at the mo. I wouldn't worry about looking like a nutter, if it helps it's worth it!! Nix x

[mrsorangecat]

You have done so well. I bet having the other side done too as a oreventative measure has been reassuring for you. I had a lobular tumour and i worry about my other side. I had 3 nodes removed, not full clearance but i think it is that that caused the problems. Wax on wax off lol, love that film! Yes Il try the housework left handed! 😉 lying too long in bed is a definitive no no nowadays. I cant wait to get up and move my arm, i feel like an 80 year old with arthritis for first hour in the morning and then it does get a bit easier. Thanks you've made me feel much better 😁 xxx

[Dmhaynes]

Hi I found stretching exercises such as Pilates and yoga have really helped and I now have full range of movement in my shoulder with minimal pain. I'm 3 years post surgery x

[mrsorangecat in reply to Dmhaynes]

Hello, Dm, thanks for your reply, yes someone else mentioned Pilates to me. Glad it worked for you. It definitely sounds like things get easier as the time go on after surgery if you keep up the exercise. Il keep it up! Xxx

[Aussielouise]

I had a lumpectomy with radiation and only two nodes removed and still 8 months post the end of my radiation I have burning pain, shooting pains and swelling in my breast. Surgeon said it's post radiation nerve damage and breast lymphoedema. The more I use my arm the worse it gets. Trouble is as you all know you have to ensure you keep moving your arm otherwise you can lose use in it.

[SurreySurvivor in reply to Aussielouise]

Do you have a lymphedema sleeve and compression wrap? I found that helps a lot for me.

[SurreySurvivor]

I'm 2.5 years out. I still have burning pain, constant ache, periodic sharp pains, completely numb areas and mild lymphedema. I have a bilateral mastectomy with complete lymph node dissection (18 nodes). Radiation caused (and is still causing) a lot of damage even though it has been years since treatment.

The AI though is the worst for me. The bone and joint pain is intolerable.

[Aussielouise in reply to SurreySurvivor]

No I don't have lymphoedema in my arm, just breast. So don't wear a sleeve. I've found anything remotely constricting around my breast causes more pain. I've found wearing loose soft bra is the most I can manage and even that not for two long. I've got radiation induced fibrosis too. Radiation the gift that keeps on giving.,, is what my doctor said☹️

[SurreySurvivor in reply to Aussielouise]

I'm sorry. Wouldn't it be nice if we had better treatment options.