Reconstruction: How does it feel?

Hi Ladies
I posted this in the recon area of the site but haven’t received any answers that contain replies. can any of you help?
I was diagnosed in 2009 with breast cancer and had a lumpectomy followed by chemo and rads. I carry the faulty gene BRCA1 and am considering a double mastectomy and recon as a preventative measure.

My concern is how it would feel afterwards. I don’t mean emotionally, I mean physically. I hate the numbness around the scar from where my lymph nodes were removed and the fact that it spreads down my arm.

I think I need to have the mastectomy but I’m not sure about the recon. I’m 36 and have two small girls - I want them to picture me the way I am now. I think I want the recon but am worried that it will feel as though I have two things attached to me that don’t feel like me - if that makes sense!?

So, can you tell me how your physically feel to you? Can you tell to look at or to feel that they are different? Do they feel like a natural part of you? Do you keep your nipples and do they remain sensitive?? (sorry - but who else am I going to ask!)

Thank you


Bumping this up for ohbaby

My situation is different from yours Faye but it may help. I had an LD flap done when I had my mastectomy and had reconstruction done at the same time. They used a muscle from my back to make me a new boob but put an inplant in too. I was 39 at the time and my kids were 6 and 13years old. That was way back in 1989 and it still looks and feels good. It did feel a little odd to begin with because when I scratched my new boob I could feel the sensation on my back! But that was done 24 years ago and I am very pleased with the result even now. I hope you get some more answers to your question. Let us know what you decide and how you are doing. Val

Hi Faye
I had my reconstruction on 2004, initially I did have restricted movement but it is a big operation. I did the excercises as opften as I could and rejoined the gym 10 weeks post op. I have never regretted having a mastectomy with immediate reconstruction. I had LD flap no implant all my own tissue. I am very proud of my right breast, in the early days I couldn’t wait to show anyone who was even remotely interested. I get loads of compliments each time I go for a mamogram or check up the last one being on Monday 15/5.
I am about to undergo the same operation again in a few weeks because I have been diagnosed with cancer in my left breast so I will keep you posted.
I’m sure there are lots of ladies with a more recent reconstruction so therefore their experience may help you come to a decision.
Please let us know what you decide.
ruby2011 xxx

Hi Faye,
I had bilateral mastectomies last year- I had breast cancer first in 2009 and then in 2011 found out I had a brca1 mutation. Its a tough decision.
You ask how it feels- there are two aspects to this- how they ‘feel’ to others and how they ‘feel’ to you. My reconstructed breast (one reconstruction failed) looks exactly as it always did, maybe more pert, I kept my nipples (though this seems to depend on the surgeon). I have no sensation in the breast or nipple when I touch them but I can sort of feel them on me now, if this makes sense. Its not quite like the numbness in the back of the arms. Anyone else feeling them would not know, and if there had not been a failed reconstruction, I would have been more than happy with the results.
I didn’t want the surgery but like you had a young child and also wanted to do everything I could to reduce my risk of developing a further cancer- my decision to have surgery meant the early discover of a tumour in my other breast, so although nothing went to plan, I am still here!!
Good luck with your decision- why don’t you ring BCC as they could put you in touch with a woman who has had a similar dilemma and it might help to talk it through.

Thanks Ladies
I was having annual MRI’s but my last one was due in March and the hospital still haven’t decided if they will fund them this year (for all BRCA carriers). This is forcing me to consider a recon as I can’t live without the peace of mind - even after diagnosis my cancer didn’t show on the mammogram so that offers me no peace of mind at all.
I had a total hysterectomy 2 years ago so my breast cancer is my only major concern now.
There seem to be so many options - I think I need to phone the hospital and see if I can talk to the surgeon.
Even coming this far has been a struggle for me as I don’t want to be ‘ill’ again. It’s taken me a very long time to feel normal again and I’m not at all looking forward to starting on the next part of the journey.
Thanks for your replies. I’ve had quite a few replies in the recon area of the forum now as well in case there is anyone like me out there who is looking for the same answers.