I was wondering if there was anyone else out there who had a double mastectomy without reconstruction last autumn? If there is, would you share what your chest feels like now? I have queries about mine and I’m always told it’ll take time to feel normal. It’s 10 months now and I’m wondering if this is as normal as it will get. I’d love to hear from anyone in the same situation as me, to compare notes. x
Hi Nuthatch, I remember your name from last year!
I was on the May 2017 Chemo group and was dipping in and out of others whilst going through the different parts of the “Journey”.
I had a single mx without recon last September and I can quite clearly agree that part of my chest feels nothing like “normal”! I also had radio in that area too and I’m sure with all the treatments my chest will never feel the same again!
Are you considering having any recon? I’ve an appointment to see my breast surgeon next March - it will be about this time that I can be considered for recon. xx
Hello! Good to hear from you.
My mx was in October, with radiotherapy in January. Whenever I ask about my chest feeling as if it’s clamped in a straightjacket, I’m told it’s early days and it’ll get better. Radiotherapy definitely made it worse. It feels rock solid to touch. Is that anything like yours?
Had no plans for reconstruction but if that’s a possible way to release the constant grip, maybe I should! Do you have to wait until now because of the chemo?
Hello again. Reporting back on the latest developments, such as they are! I had a meeting yesterday with the physiotherapist and the lymphoedema specialist - both together - in the hope of making some progress. They have advised that I should ask for a meeting with my original surgeon to see if she can shed any light on my hard tight chest! So I’ve emailed her and am waiting to see what she says. I’ll keep you posted, in case it’s anything that might help you too.
I’m not keen on any reconstruction - but if it might lessen the clamped feeling, I would consider it. I thought it would keep things simple if I just had the double mx, but that doesn’t seem to have worked!
Anyway, I’ll keep in touch. x
I had a single mx and it took something like two years for the tightness to go. I have a part numb area over the scar.
I carried on with the excercises and use weights. If I do not do them for a while then I feel tighness and shoulder problems building up . I’ve made this an incentive to do these and other exercises rather than seeing it as a negative thing.
I’m sure you will find things do improve as time passes and then suddenly you wiill not be aware of your chest. .I certainly needed a pillow between my arm and chest in bed for over a year and.it was ages after that before I could lie on that side without getting pain in my shoulder - but I can now!
.Best wishes for your recovery.
Yes I will certainly let you know if/when I find out anything else.
Re lymph drainage issues, yes I have probs with my left arm. I had full node clearance and then also radiotherapy across my underarm. That seems to have messed with my lymph drainage there and I have slight lymphoedema and do drainage massage daily.
Let me know how you get on. x
Thanks for your message. It’s helpful to know your timeframe for feeling less tight. I’ve frequently been told it’ll just take time - but that often feels like being fobbed off and not really investigated. Now I’ve seen images of what’s going on inside, I feel better able to accept things. And your info about weights is helpful. That’s the sort of thing that helps now, rather than waiting patiently for things to improve and then discovering about weights when I’ve left it too late! Thank you. x
Not yet! I’ve got back to the after-operation exercises. My physio had said no need to keep doing them after about 7-8 months. But my underarm definitely feels tighter again so I’m back to doing those and will prob add light weights - like a little water bottle? Can you get your hands round a bean tin? Not sure I can! X