I’m nearly 8 months post mastectomy and immediate reconstruction and lymph node removal. Had cording but after physio only a bit left in armpit. Struggling with arm issues and linked sleep problems and fatigue. Back at work in office based role. My non cancer side I’ve got lots of shoulder pain and arm issues painful but had previous issues. My cancer side my arm sill feels like it’s huge (it’s not), heavy, pins amd needles and getting nasty pinching sensations. I’ve been doing rehab exercises and started gym and gentle lifting but everything feels so painful. Do I need to just push through or should I contact someone? Finding it v hard coupled with menopause crash and not quite accepted new body yet.
Have you seen an NHS physiotherapist?
In some areas in the country we can self refer to musculo-skeletal services (MSK). They can assess, diagnose, request imaging and make onward referrals. If it’s not an option then you will need to ask G to refer you. You may bd able to do this via online e-consultant. Alternatively contact your breast care nurse as they should be able to advise/signpost. X
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I saw msk physio for cording and she discharged me. Said that I might just have to get used to a new normal. But I think going back to work has changed that as clearly different positions etc. Thanks for the advice
@flosk Hi there. I’m sorry to hear you are struggling.
I had a lumpectomy and full axillary clearance 13 months ago and have had quite a few issues with weird feelings and pain caused by nerve damage after the axillary surgery. I agree with @mrsjelly that specific physio may be helpful and the BCN should be able to help with this but I found that, after the initial nerve pain, my worst time was at about 8 months post op. The nerves start to reconnect and heal and you get all sorts of funny sensations. I also found Ineeded to be careful about what I wore eg. I couldn’t wear a jumper with nothing under it last winter, I needed a long sleeved top underneath or got all sorts of funny sensations, but this year that has gone completely. Also I used a pillow in bed and on the sofa for quite a few months to support my arm and found this helped. You may need something similar when sitting at your desk.
Re the pain in the other arm/shoulder. I too had preexisting pain in my shoulder and this was much worse once I started Letrazole, plus neck pain. Are you on this too as its weel known for causing joint pain? I am also on Abemaciclib and they have recently reduced the dose of this which has greatly reduced the amount of pain.
Are you taking enough painkillers, and taking them regularly? This is really important and you are less able to cope with anything when you’re in pain. Paracetamol and Naproxen (prescription only) really helped with the shoulder pain though not so much with the nerve pain.
Tell your team what is happening and how you feel and they will, I’m sure, do their best to help you.
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Hi , I’m so sorry your going through all this pain , I’m three years finished treatment in June past and I’m in chronic pain every day , it’s a daily struggle and very debilitating for me , I had mastectomy ,reconstruction, chemo and radio and auxiliary node clearance, they took 30 lymph nodes away . My consultant says some ladies are very lucky they don’t get it and some are unlucky like myself . It affects my movement in my fingers my arm , Ive bad numbness in my arm and some days I just want to cut my arm off the pain is excruciatingly . No one has a clue so I’ve total empathy for you , he has me on pregabbalin now but says I’ve to take it all the time . When we get a diagnosis our work turns upside down and changes us into someone who we don’t know , best of luck and hopefully you will get some help xx
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Hi @flosk
Have a word with your BCN - might be the start of lymphedema so get in to see that team. It’s the heaviness and pins and needles that make me think that. I am not a medical person - I developed lymphedema about a year after my mastectomy and total auxillary removal.
The sensations you have are similar to how mine started. Please do not worry - yes, BC might be the gift the keeps on giving bit it’s totally manageable. It really doesn’t impact on my day-to-day life…. says she who forgot to put her cuff on before I went to the gym this morning. First gym trip of 2026 so I did not turn around to put it on!!! No arm stuff or weights this morning.
Good luck!
AnGELa x
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Thanks - I do have a pillow and a cushion in bed so good idea about the desk.
Thanks - spoke to BCN today after reading everyone’s replies - she’s referred me to the lymphoedema service. I didn’t think of that as no swelling but apparently can start with the symptoms as you said. This whole BC thing is a learning curve!
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