What does it feel like?

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

Hi Faye

You may also want to post your query in the ‘Family history and genetics’ thread as other users posting there will have had similar experiences to you:

Here’s the link:


You are also welcome to use our ‘Peer support’ email or telephone service where you may be able to speak to someone who has had this type of surgery, you can contact our helpliners to find out more on 0808 800 6000, 9-5 weekdays and 10-2 Sat:


Take care


Bumping. And watching with interest…

Such a good question. Hope we get some ‘old hands’ to share their experience!

I’m a bit dissapointed that we haven’t had any answers yet. When I was diagnosed there seemed to be loads of people willing to talk. I’ve posted this same question in younger women and in family genetics to see if we can find out more. The only thing stopping me from saying yes to the op is the answers to the questions below.
I’m glad that ohter people are interested in the answers as well.

Hi ladies, sorry you are not getting any answers… I think that most people drift away from the site once their active treatment is over. My experience isn’t the same as yours, but for whatever use it may be, I’ll try to answer the questions.

I had a unilateral mastecomy and immediate LD (back) flap reconstruction about 2.5 years ago (Feb 2011) which was after chemo. The location of my tumour meant there was undisputable nipple areola complex (NAC in technical jargon) involvement, so it had to go. Most people seem to lose the nipple on the affected breast.

How does the recon feel? Lots of answers to that one… at one level it feels totally normal, I woke up with cleavage intact and once the wounds had healed all looked amazing. I have no skin sensation in the reconstructed side - which has also been well and trully nuked (25 zaps of rads) but the muscle inside is still capable of feeling, if that makes sense. Over time, the reconstruction has softened and my plastic surgeon described it as amazing, especially since it has been irradiated (which can cause skin and muscle to shrink and/or toughen; I still moisturise daily).

Six weeks ago I had a nipple reconstruction - some skin and fat from the end of my LD scar was harvested and stitched onto my front. It looks amazing - and even fooled my BCN into thinking it was a nipple share because of its appearance. Obviously it has no sensation, but looks what I term ‘semi-erect’. Hopefully in another couple of months I will get areola tattoing and that will be me :slight_smile:

Because I had rather ample breasts, my recon (no implant) was quite a bitter smaller and more pert than the remaining breast, so in February 2013, after a very long wait on a list, I had a symmetery procedure to reduce and uplift the healthy breast. Initially it felt quite hard - a large chunk of flesh had been removed and the skin cut away to leave a rather wonderful, pert result. As part of this procedure, the NAC was re-sited upwards. and this is why I am sharing this bit. For a few weeks the nipple was hyper-senstive, permanently erect and sore, but it did settle down and almost six months on the breast is amazing. The nipple and breast have normal sensation, and I would go so far as to say that the scars are not numb on that side. If you have a prophylactic mastectomy, nipple sparing may well be possible, and is worth asking about.

I am a good deal older than some of you (50 now) so maybe image is less impoerant to me, but I’d claim to have the bust of someone in her thirties again… Plastic surgeons can do wonderful things, but it is often a long haul, and you need to be determined to keep on keeping on - I am nearing three years since my diagnosis and still not quite completed all the work. I hope that whatever you decide, you get results you are happy with, and that you remain healthy.

Hope that helps, and that you get some other answers, more directly relevant, soon.

Hi Faye,
I had a slightly different procedure from Revcat. I had a delayed LD flap with implant. Original mx 2007, recon three years later. As I am slim with no available body fat to use, I had an implant with the LD flap, and then as I was only a AA I also had a smaller implant into my good side to give a good match. On the recon side there is no feeling, as it is all skin/muscle from my back, with an implant, but it looks very good. On my other side there has been some loss of feeling from having the implant put in - I’m told I was unlucky with this, as only about 1 in 6 lose feeling, so 5 out of 6 are OK. How do they feel? Well definitely not as something alien on my chest - I don’t think about them most of the time, I am not aware of something sitting on my chest. For me the result is miles better than a flat mastectomy chest, and I am very pleased I did it. For the record, I think my OH is too. When I made the decision to have the recon it was for me, not for him (there was no pressure from him to do it - I think he made a point of not influencing me either way) - this is not something you can do to please anyone else - but it’s nice to know it has been a good result for him too.

This is a very informative thread, thanks to Revcat and Roadrunner for responding. Is there anyone who has had a DIEP reconstruction who would share their experience? I hope I’m not highjacking ohbaby’s thread, but I thought she might like to know about how all the recon options feel, as well me.

Hi to all,
I have had two mastectomies, both with immediate reconstruction using an implant (and strattice mesh). Very happy with the results. With cloths on it looks very normal. That makes me happy. I don’t think about it much either now. No nipples sadly, but perhaps one day I will have them tattooed on. The implants do feel quite hard, and on occasion when I hugged someone I almost bounced off them. Well, perhaps that was just me being sensitive to that. I also have run into doorframes on occasion. And bounced off. Maybe I am just getting clumsy :-). I have not much or no sensation in a large area at the front, and under arm where lymph nodes removed. That’s just odd sometimes. And missing my nipples. But overall I am happy having gone for the reconstruction and having a normal appearance in clothes.
hope this helps?

Hi, what does it feel like? Different for everyone, but if it might help here is my feeling. I had mx with immediate recon,chemo,rads, tamoxifen in 2004/5. It failed due to many, many complications. I persevered and eventually had a reasonable result (LD with implant). I had a reccurance in Mar 13 in recon and new tumours in previously unaffected side, so had double mx with tissue expanders. still having problems with wounds and seroma s. It feels numb, I too bounce off people when hugged, it’s cold in winter. Why do I persevere? When my first recon failed I had a silicone prosthesis, and I could never get over the THUD as it hit the floor when I took my bra off at night. Also the worry of it moving about, clothes etc. We are all very different, I found it too hard to live with the THUD, others don’t mind. Hope that adds a bit. Po

Hi - I had mx with immediate Tram Flap recon 9 months ago. I am really happy with my ‘new’ breast. It has a lovely shape and feels good. There is a slightly odd sensation at times, but when I am wearing a bra really don’t notice anything unusual. It has taken time to get to this point though. At first it was like something had been stuck on, but that didn’t last long.
Obviously I have no nipple, which doesn’t bother me in the slightest. I don’t think I am going to bother with tattooing or anything else (stick on nipples don’t appeal). But everyone feels differently about it and you don’t have to make the decision on this until you are well and ready to. Good luck. Ann

Hi all. I had a skin sparing mx last summer after chemo but before rads. I had implant recon at the same time because I wanted it done and dusted with minimal fuss. At first the implant felt very strange, hard and heavy (despite me only being a 34 B/C cup). However a year later it feels normal, a bit solid if I lie on my front , and yes the bouncing hugs can be a bit weird! To touch the implant breast is generally cooler, firmer, less soft, and there is some wrinkling on my skin which was slightly freaky at first but is now just part of me. Skin sensation is returning, it’s not quite numb but not much sensation really (still got a very numb area on the back of my arm). The scar has almost faded. Looks wise, in a bra or clothes it looks bloomin gorgeous!!! I don’t expect the recon side to look the same as my natural side unclothed, it also moves in a more solid way (eg when you clean your teeth and lean over the sink, don’t look in the mirror!! One breast, smart and to attention right up on the rib cage…the other, well…saggy and wandering around doing its own thing)
I’ve just been given a stick on nipple to try because I’m not sure I want surgery to create a new one, I’m very pleasantly surprised at how natural it looks through clothes. I’m 46 now, just wanting to get on with life again, and my implant boob is exactly right FOR ME. In fact out with friends recently and one of them prodded my natural side saying “oh wow, doesn’t it look good? You really can’t tell…” I still haven’t told her the recon was the other boob :slight_smile:
Good luck all, take your time (if you can) and choose what’s best for you

Thankyou ladies, for recounting your experiences.

Ali, that last paragraph made me laugh out loud! :slight_smile:

Hi there
Thought i would share my experience of LD recon with you quickly…
I had left MX in Sept 2009 and started out with tissue expander recon. Horrid and ugly is all i can say about that.
I then moved on to an LD in 2011 and the improvement is vast and accepatble for me now.
i have significant scarring to the reconstucted ‘breast’ but that is down to my previous failed TE surgery.
In terms of shape and size, i am a 36 D now which suits my 5ft4 medium build frame.
I have had several uplifts and implant exchanges on my good side, in an effort to match the recon and I THINK was are finally there now!
I have a reconstructed nipple, with skin taken from my back and an areola tatoo, which looks great - the colour is amazing as i am light brown skinned.
There is no sensation in the recon/nipple at all, but i am slowly getting used to that now.
It has taken me a long long time to acccept the reconstruction and i have only just reached a near point of acceptance, this month in fact.
I have had lots of complications, but decided to persevere, because i was certain that a prothesis, howecer light and natural, would not be for me long term.
In clothes it looks great - undressed,i am getting used to seeing the new look and all the hard work that has gone into restoring my body.

I hope this helps?
Best of luck
Naz xx

I’m a member of a Facebook group called Younger Breast cancer network, it’s a secret group and lots of women chat there. I can’t help with the recon question as I’ve still got expander implant but I know there are others who could help.

Thank you Ladies - I really do appreciate hearing about your experiences.
One thing I’ve been worried about is perhaps something a bit daft in the grand scheme of things…have you ever seen the film Mrs Doubtfire? Well ‘she’ (Robin Williams) is cooking and sets fire to her fake boob and doesn’t notice - I don’t want to be Mrs Doubtfire!!!
To be honest I hadn’t ralised that there were quite so many options in terms of the type of recon so I’ll have to have a good read of the fact sheets on this site.
My husband doesn’t want me to have the recon as he doesn’t want me under GA for any longer than needs be. He is very supportive of whatever my choice is and doesn’t give his opinion on anything at the moment as he says he doesn’t want to influence me. The problem with that is that I’m interested in his opinion.
Would love to hear from more people if possible.
Thank you again

I was dx Jan 12, was neoadjuvant, so I’m just 12 months out from having had a bilateral mx with immediate double DIEP - one side bc with full ANC, and the other prophylactic mx.
My husband pretty much sat on the fence as he didn’t want to influence me but wanted me to make the decisions that I thought were best - but at times I felt that was a cop out and not in the least bit helpful!
The results are nothing short of amazing, and I’ve no regrets over having the double mx, even though I don’t carry the braca gene.
They feel pretty good to the touch, they feel like breasts, and they are a normal temperature. Interestingly they feel different from each other to me, but that is due to the nerves on the bc side being cut into more plus the numbness from the ANC - the “good” side feels less numb.
I chose to have both nipples removed - no choice on the bc side - and have since had nipple reconstruction - and they look very good! Obviously there are no nipple reactions, as there is no erectile tissue - but i still feel the sensation you get when the nipples become erect.
It"s a big op, make no mistake, mine was 11.5 hours - but it was the best option for me, and I would do it again, and I have no regrets!
Hope this helps, Sue x

Ali H - I am due to have a double mastectomy next week. Am scared senseless when I think about it so living for each day at the mo. I have extensive DCIS in my right boob, am 36, tested negative for BRCA genes, but my mum has had bilateral breast cancer (at 49 & 58) and my nan had breast cancer too in old age though so could be discounted from family history point of view.
My consultant said I didn’t need a double mastectomy but would not resist if it gave me peace of mind, bearing in mins my family history. I decided a double would give me peace of mind and make me feel more symmetrical physically and mentally. I didn’t know if I’d be upset having one “normal” boob and one plastic one, if you see what I mean. I am worried about numbness, and just generally having implants that are alien to my body (I don’t have enough tissue to use for reconstruction- unfortunately). Anyway as the day draws closer I’m begining to think I’m mad to remove my healthy breast and should retain as much of myself as poss. Its such a tough call when faced with strong family history due to my own diagnosis at 36, but testing negative for BRCA genes. So was very interesting reading your post…did you ever consider a double mastectomy?

Oh I have two young daughter too 3&1/2 and 1&1/2 so losing sensation in my chest area upsets me when I think of not feeling cuddles with them. I think that’s upsetting me more than anything at the moment as the op fast approaches! :frowning:

Hi Laura
I can understand what you mean about cuddles - my girls are 5 (last week) and 3. I was 3 months pregnant with my 3 year old when I was diagnosed and had to have 5 of my chemo sessions whilst pregnant. Genetic testing is still relatively new from what I can understand and so it is possible that there are other genetics issues other than BRCA1 and 2 that perhaps play a part. You do have a strong history. However scary it might be I guess what I’m saying is better safe than sorry.
I had a full hysterectomy 2 years ago to prevent the Ovarian cancer that was a possibility with my BRCA. I went in being totally well and found the last few days before the op very difficult - questioning whether I was mad having an operation when I was technically perfectly well. The thins is that I KNOW I did the right thing - I knew it before I had the op I was just scared of both the op itself and recovery.
I hope you get on well with your new you - I’m sure cuddles will be as wonderful as ever xx