Bilateral mastectomy one year on.

Hi

I’m one year on from a double mastectomy and I’m disappointed that I still feel tightness and pain when doing certain movements. I always feel as though I’ve got a tight band across my chest and have decided that that is to do with the fact that I have a band approx one and a half inches wide that is completely numb still and I’m just going to have to live with it. Does anyone else still experience pain and tightness though especially when you lift your arms high? I have been having Physio. for it and they reckon that it’s a combination of scar tissue and radiotherapy. Am I just being unrealistic in wanting it all to feel like it did before treatment or will it always be like this? If I don’t look down I can forget that I’ve no breasts but the numbness, combined with the pain and tightness, is just a constant reminder that I’ve had cancer.

Janail

Hi - I can’t really comment because I’m only three weeks on from my bilat mastectomy (no recon) but those are just the sensations I have at the moment (tightness, numbness etc) and I have been hoping/assuming that they would change over the next months to a more normal feeling. I was told by the physio at the time of the op that when I could I should start massaging the whole chest area gently to help with the scar tissue. I can’t really do that at the moment as I still have seromas both sides. Does it take more than a year for it all to settle down?
Cheers
Maggy

Hi Janail

I’m 8 months on from a bilat mastectomy and do know what you’re talking about. I have been gently massaging the area to stop the scar tissue getting too solid.
I think that over the past 8 months things have gradually improved although they got tighter again after Rads. I have found that the exercises really help and even one day not doing them makes a huge difference. I’m accepting that I will have to do them daily probably for the rest of my life.

I had a shoulder problem before the double mx and that has definitely got worse and can be quite painful so I’m having physio and acupuncture for that.

As for numbness I have no sensation under arm, on the outer edge of my shoulder, the top inside of my arm and around the mx area on the side I had the axillary clearance. On the otherside I have some numbness around the mx area. I was told by my surgeon straight after the surgery that it was unlikely I would get sensation back in that area. I think it very common that they have to cut nerves.

Maggy - I had seromas both sides and it took quite a while for mine to settle down but they do eventually. I found that chemo delayed the healing quite a bit and once I finished that then things suddenly improved.

Janail perhaps your surgeon or bcn weren’t honest enough with you post surgery about what to expect and so it’s been a huge disappointment? I think it’s about living with a new normal and not thinking back to how things were before.

take care
Elinda x

Hi,
I had a bilateral mastectomy in March 2008. I sympathise with your stress over symptoms. I Did experience some of the pain and discomfort that you have mentioned. I did find that over time it dared though. I had physio for problems with my shoulder which really helped. After that although I was still numb under my arm and maybe didn’t quite have the same range of movement as I did before it was pretty close. All in all I would say that things were going pretty well.
Six weeks ago I had bilateral reconstruction which seems to have been a success. I now am back to limited arm movement and I have a lot of tightness across my back where they took the muscles away. My new boobs look pretty great and I’m getting more movement back everyday and the tightness does seem to be improving. I still have a lot of numbness which I hope will lessen in time.
So I guess for me it’s not been as bad as I maybe expected. I hope this helps a bit. Keep the faith and I hope things improve for you.
Gill. X

Oops just reread that last message and it should say eased over time not dared!