Still having pain 5yrs after simple mastectomy

[Shelley61]

Hello TheGen,

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!

Shelley x

[Shelley61]

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.

Thanks again!

Shelley x

[Rattles]

Hi Both,
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.
Rattles x

[TheGen]

Hi, Shelley61,
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!!

[Shelley61]

 Hello,

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?

Shelley