Phantom breast pain after mastectomy?

[Chelee]

As many of you know I had a prophylactic simple mastectomy on 4-15-07. I wanted it gone for two reasons. One the fear of bc returning in that side, & the dreaded mammo's. Plus I had pain in that breast & axilla for 6 months. Four masses were found but were suppose to be consistent with lymph nodes. (Still concerned me due to on-going pain & my bc history.)

But I've noticed since my mastectomy on 4-15-07, I still have the axilla pain which has actually increased. (But surgery may of distrubed that...so I will give it some more time.) But I WAS having breast pain in the 2 o'clock area, areola & nipple. Now the breast is gone & I have the exact same pain in the areola & nipple? I heard & read about phantom breast pain...but this is weird. I did *not* experience this last year with my MRM. Does this every go away...or only time will tell? Has anyone else here had phantom breast pain?

Chelee

[StillHere]

Yes, I have had the phantom pain. I remember telling a friend at work last year that my breast area felt like I was have premenstral swelling and discomfort. I don't seem to have it as often, I am 1.5 yrs out from bilateral mastectomy. I am still NED, so hopefully that is some comfort to you. Peace, Karen

[chrisy]

Chelee,

I had some phantom pain for a while after my mastectomy. It was not constant, more just like a jolt now and then. It was pretty freaky but in my case was not extremely bothersome, more like an occasional spasm. It continued, at a decreasing rate, for maybe 6 months.

[Chelee]

Karen & Chrisy, Thanks so much for the replies. Hopefully it will eventually go away in time. Mine is a constant pain. (Not severe pain, but enough to annoy me.) Its so strange to have it feel almost exactly the way it did before the mastectomy. Its the last thing I expected...its weird. After hearing from you two, maybe it will slowly disappear in time. Thanks again to both of you. Its much appreciated.

Chelee

[Sandy H]

Oh yes, really freaky! I had the phantom pain as well. Would have this intense itching of the nipple and nothing to scratch. Than the feeling of a bra that was too tough around the chest. Some times felt like a belt that was too tight. That lasted a few weeks than it gradually went away. Had others tell me they also had it. Had other sensations. Have none of those now. The arm with lymphedema was even worse for pain and sensations like water running down my arm etc. It gets better with time. hugs, Sandy

[Chelee]

Sandy, I'm glad to hear I am not the only one that has experienced this. When I get that annoying type pain in my nipple without thinking I go to touch it as its very bothersome. But *surprise*...there is nothing there. lol Its so real. I have other weird feelings in there too.
You mentioned your bra feeling too tight around the chest...I haven't been able to wear one yet...but I am dreading it already. I am just praying that with time as you mentioned it will gradually pass. Thanks so much for your reply.

Chelee

[hutchibk]

I can honestly say I have had phantom ache for 3+ years. Not too terrible, but it jumps out and bites me from time to time. It has subsided a bit over time, but I do still get the occasional 'jolt' as Chrisy calls it!

[Chelee]

bhutchison, Mine is more a light constant nagging sort of pain. This is bad enough without what you and Chrisy call a *jolt*. I bet that sure gets your attention! Your the first one I've heard from on this board that has dealt with it over a three year period. I sure hope mine goes away and doesn't stick around. I guess I am lucky...I've now had both breast removed and I only have this problem in one. (So one out of two isn't so bad.) lol

Chelee

[Barbara2]

My onc has said that people can have pain both in the removed breast and removed node area, forever. Not sure if it was intermittant pain or constant pain, though.