Achey shoulder, collarbone and neck after mastectomy

Hi all, after 18 weeks of chemotherapy. I had a mastectomy on 24 June with axillary clearance. Before starting three weeks of radiotherapy, I had a CT scan (presumably of whole body or perhaps the torso - I was terrified so didn't ask many questions). They saw a tiny collection of blood vessels on the spine, so I had to have an MRI.  Radiotherapy to the chest wall, axillary and collarbone area finished 14 September. Two days after, I had a bone scan (which took ages) and this was clear of metastasis..

Shortly after radiotherapy, in September. I developed lymphodoema in chest wall, axillary area, and the flank round the back of the armpit. It's not goes up and down, but the tightness in the armpit and across the chest wall can be noticeable. Stupidly, and for about a week I stopped doing the exercises regularly.
Just before Christmas, I noticed a mild ache in collarbone area. Not everyday, and not when resting or asleep. This became diffuse, my shoulder aches, back of shoulder, back of neck, sometimes top of arm. It comes and goes, disappears on exercise and resting on the bed. But some days it can be a drag. It's a bit like the discomfort I used to get when I had a bag on my shoulder for too long - but I can't use that shoulder now.

Has anyone else experienced this? Whist it seems to be getting less bothersome since upping the exercises, I'm terrified that it's mets or a recurrence, especially as a small area between my neck and collar bone seems a bit puffy compared to the other side. However, my chest wall and armpit has been puffy for months. 
Ive contacted my doctor for an appointment, but wonder if this is something to expect after surgery / radio, etc. 
thank you!!

  • Hi, Ive posted an update, just incase someone ever searches for this issue on the forum. I saw my GP today, and she examined me thoroughly, checking for any enlarged lymph glands, lumps, bumps and swellings in the neck, collarbone, upper chest wall and axillary area. She found nothing of concern, but commented that the changes and sensations / aches that I reported were normal as part of the healin* process, and I would continue to notice these for at least another year, maybe two years. She checked my shoulder and neck for movement and stretching (a key one appears to be how far you can reach up your back).  She said that they (doctors) see a lot of shoulder, shoulder blade problems after mastectomy. Id noticed that things had improved in the past day or so by doing more of those exercises that we are told to do. However, she gave me some further advice on that too. Exercise is key (well for me anyway) it seems. 

  • Hello Carole12

    I'm so glad to hear that you were able to see your GP and she could give you some reassurance that what you're dealing with at the moment is an annoying but normal part of the healing process. 

    Do keep on top of your exercises as this definitely will help. 

    I wanted to pop on with a quick reply as I remember reading a post here previously from another lady who had had a mastectomy and she mentioned how the position that she slept in at night impacted her shoulder discomfort. If you're a side sleeper then it may be worth having a look at ways in which you can change your sleep position or better support your body at night. Not necessarily an easy undertaking if you're a heavy sleeper but perhaps worth thinking about as well. 

    Hopefully, over the coming weeks and months, things will start to settle and improve for you. 

    Let me know how you get on.  

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thank you Jenn. As it happened, yesterday I bought one of those v pillows and doing that laying my head on one length hoist on my side, and using the other length to support my arm and axillary area helped. 
    Best wishes, Carole