I’ve had two different breast cancers, but they’ve both been very early stage. I had lumpectomy and then a cavity shave for DCIS and needed an additional operation to remove a haematoma. I followed up with 25 radiotherapy sessions.
Then a few years later, I had a simple mastectomy for Paget’s in the same breast, and I didnt need any more treatment, apart from surgery the next day for another haematoma.
Now, I still have pain in my shoulder, near my arm pit, and at the bottom of where my breast would be, on my rib. I can’t reach upwards for long without it being very painful, and twice I’ve gone into spasm which was really painful. I’ve used paracetamol, and either ibuprofen tablets or high strength ibuprofen gel, but it’s not done much good. One doctor has suggested my pain could be to do with having had the haematomas (I had one after my mastectomy as well), as a long term result of haematoma pressure causing nerve damage.
Someone else suggested to me that the pain could be as a result of radiotherapy.
The other night though, in desperation, I googled “pain after simple mastectomy”.
It came up with something called "Post Mastectomy Pain Syndrome, which can happen following lumpectomy as well. It also said it was more prevalent in people who’d had surgery near their axilla, which was where my lump was, and also in people who’d had lumpy breasts years before their cancer diagnosis - I had lumpy breasts.
Has anyone been diagnosed with post mastectomy pain syndrome?
I am 3yrs post lumpectomy with a further two surgeries for reconstruction, the last one a year ago, but still have quite intense pain in my armpit and ‘tightness’ at the top of the affected breast.
Although I have told my breast consultant and plastic surgeon they do not seem concerned, only that my mammograms are clear (which they are). Sometimes the pain is to the extent where pain relief is needed and if at home, be without my bra, although this doesn’t always help.
I am due more surgery soon as the last didn’t go too well and for all I know this may be the cause of the pain? So I don’t really know why or for how long I have to suffer this, only that I feel guilty if I complain as I know I am luckier than a lot of other women, so tend not to make too much fuss. You do have my sympathy though. I think we feel that once it’s done with we shouldn’t have ongoing problems to deal with, I have enough with the medication side effects!!
I have this and been told -in my case - its likely to be caused by repeated surgery. I’ve had five surgeries on the left to treat two breast cancers and also had poor healing due to radiation damage. My pain levels vary between low and high. It’s worse in the evening. The cramping pain is apparently very common and helped by movements and exercises, similarly the shoulder pain. It seems that treatment is limited. I’ve tried some of the treatments for nerve pain and one really helped but had to come off it as the Consultant said it was not suitable for long term issues. I also use a lidocaine patch which takes the edge off. I’d been considering more surgery but pain consultant said in his opinion more surgery would make the pain worse.
Hope this helps. There doesn’t seem much support for this long term effect.
Feel free to ask any questions.