thanks ever so much for replying to me. You're right - I don't mention it nowadays at my annual hospital follow-ups, cos I think they're only interested in the mammogram result and checking my chest wall and remaining boob.
You're so right - once through this journey, I think we don't want to complain about pain etc, cos we just feel so lucky not to have had a bad prognosis etc.
Have a look at Rattles' post below - it's really helpful, I think. We're all different aren't we, in our specific bc journeys, but I feel reassured that my GP may be able to help me, and I wish you all the best with your upcoming surgery, TheGen.
Please let us know how youo go on, and take care of yourself!
Hello Rattles, thanks so much for your reply. I think I've felt so alone with this pain at times, and it affects me at work. I don't always have a lot of self confidence, but now I've found out my symptoms may have a name, I've made an appt with my GP for the week after next. He's a good GP, so I feel more positive now, that something can be done about it.
Even if the pain can't be fully controlled, at least I'll be able to lessen it hopefully. It gets very painful at times.
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?