Upper arm, top of shoulder ache and BCNs response.

Morning all

WLE Sept 2017 for IDC 8mm (65 years old)

Her2+ and estrogen+8.

No nodes involved.

15 radiotherapy, no Chemo and Anastrazole for 5 years ending Sept this year.

About 6/7 weeks ago I noticed a heavy ache at top of left arm just below shoulder joint on the outer side. Couldn’t remember over exerting or straining. It was still there a week later and a dull ache in shoulder joint at the top. It seems to be mild some days and troublesome other days. I’m having physio for hip and low back pain (age related) and was asked last week how I was etc and mentioned the arm and shoulder. I was asked if I had told anyone and I hadn’t. They asked questions about had I lost weight etc. I said if I ran to BCN every time I had new aches I would be living there!  I get intermittent aches and pains in breast and underarm due to scars and nerve regeneration so I’m use to that. Physio said I should tell someone. 
I rang the BCN nurses and got someone I had never heard of. Told her what had happened. Said I had been concerned at first being same side but then dismissed it. BCN said it wasn’t to do with breast cancer as it was on outside and only if it had been on the underside and/or any lumps would it be to do with it. She said it was for my GP to deal with as it wasn’t to do with breast cancer. I asked for advice and was told Ibuprofen gel (can’t take orally) and paracetamol. 
I am not a nurse or doctor but the more I thought about what the BCN had said I felt sure she had got that wrong. I’ve made a GP appointment think they will refer me back to BCN? It isn’t to do with physio treatment  as I hadn’t had any for a couple of months as they had to cancel all appointments due to covid. 

Would appreciate any thoughts or opinions please.

Many thanks

Frances x

Hi Frances , it’s hard for your mind not to go to breast cancer related explanation when you have aches and pains initially isn’t it ,but in the vast majority of cases it will be another issue causing your pain Nevertheless If you are still under the care of the breast team they should really take your concerns seriously , mine referred me for a nuclear bone scan when I had leg pain ,this is really helpful in determining changes that might be suspicious .I was eventually diagnosed with a genetic bone disorder not secondaries but it was a scary time .

See what your GP advises but like you say they may well pass it back to breast team. You could maybe ring the team again and push for scan ?

Hi Frances,

I have exactly the same problem. SMX last July 2 lymph nodes removed but not affected. No radio or chemo, the heaviness started a couple of months after the op. My BCN first told me to increase the exercises they give you but this resulted in the heaviness turning to pain. I rang back and she also said it was nothing to do with my op see my GP. Of course you can’t see a GP but they referred me to a physio. He did some movements with me and told me it is arthritis in my shoulder, probably worsened by the op. I do have arthritis so it’s possible I suppose, he told me to try a Tens machine. Well I’ve been trying it for a couple of months now and I can’t say it’s helping. He said if it doesn’t help to go back and he will give me a steroid injection so I think that’s my next step but it’s so frustrating that these different areas of treatment are all so fragmented and I’m not at all convinced that it will work. Why don’t the BCN’s know that this can happen? Why can’t they refer you directly instead of all this back and forth with different people who don’t have access to your medical history in full? So many things no one warns you about and you just feel like you are on your own.

I have other issues with my treatment at the breast care clinic but they are for a different thread. It’s hard enough dealing with this diagnosis without having to fight the system.


Hi Frances,

I can empathise with your dilemma. I had DCIS some 18 years ago had Lumpectomy and around 25/30 sessions of RT (can never remember exact number). I was fine for about 5/6 years then started experiencing the occasional ‘stabbing’ pain in my Breast, perhaps like you I kept imagining the worse, but didn’t want to keep contacting my GP, eventually I requested a referral for a Mammogram as I needed peace of mind and had it within the following week receiving the all clear immediately at the Hospital.  It didn’t make the pain disappear, but I could accept and deal with it better.

Now unfortunately I have BC in my other breast, but heyho Ive been on this ‘Journey’ before so taking it a day at a time.

Discuss your concerns with your GP and plan the way forward that will give YOU peace of mind, perhaps a Mammogram or maybe a Scan?