Hi
I’ve posted this question in the reconstruction area of the forum but haven’t received any answers. I wondered if any of you could tell me your experiences. I’ve also just posted it in the family genetics area as it links to BRCA.
Anyway, 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
Faye
Bumping into latest posts
Hello there
Hope I can help in some small way! I was recently diagnosed with Pagets and Ductal Carcinoma In Situ and therefore had to have a mastectomy. i decided to have immediate reconstruction so that I could get it all over and done with and I had to make a choice between the tissue expander and ld flap. I found this a difficult decision because no type of reconstruction is entirely perfect. I eventually chose the ld flap because, although this operation is a big undertaking, I was advised that with the tissue expander you don’t get an immediate breast. You have to have saline injected every two weeks and then the breast implant is not inserted for about six months. With the ld flap, I felt like I had been run over by three buses afterwards but after touching and feeling and then eventually looking I do feel as if it is my own breast. After all, it’s made from my tissue. I can’t say how I would have felt with the tissue expander and breast implant because of course this involves only your own skin. Only someone who has had this type iof surgery can tell you if it felt like their own breast. I had to think about long term and because I am still young had to think about a surgery that is going to last me the rest of my life without keep having to have operations. I’m not sure whether you are able to have ld flap surgery on both breasts. That’s something I don’t know. i suspect Angelina Jolie and Michelle Heaton had another type of operation. Anyway, yes it does feel as close as can be to my own breast and it was nice to wake up with two boobs straight away. 
Thanks Soosie, thats really helpful. I can see why the expander would put you off - It took me a very long time to feel normal again after my treatement and I’m reluctant to do anything that is take me too far back on the journey.
I’ve had quite a few replies now on the recon area of the forum so am getting good input.
Thanks again
Faye
Glad I was able to help. This was a very difficult decision for me to make and it would be interesting to hear from any other ladies who have had the tissue expander operation to see if it really does feel like your own breast. If I ever have to have the other one done perhaps I would consider this op!
I had a mx and the immediate DIEP recon on one side in Nov 11. From the start I was delighted with the result. Although the area is numb it nevertheless feels very much part of me. I had a nipple recon and lipo on the new breast 4 weeks ago and now just await the tattoo. It is a BIG op - i was in hospital for a week and I had 6 weeks off work but it was absolutely the right choice of recon for me. I have a hip to hip scar across my tummy but below the bikini lineand areas of my tummy are numb. Scarring on the breast is minimal and once the tattoo is done it should look no different form the other one.
If you have any specific questions please do ask.
Good luck x
Hallo oh baby,
I know it’s a hard decision to make, as i prevaricated for a while recently. I had a lumectomy and removal of lymph nodes at the end of May which wasnt entirely successful, so chose to go for a mastectomy rather than further excision. I then saw the plastic surgeon who suggested that a TUG flap (taken fro the thigh) reconstruction would be suitable for me as I have no spare stomach and relatively small breasts. I didny want to have implants as i still need radiotherapy. A date was booked for surgery although I wanted time to think about it, as I had not read about that particular procedure before the consultation.
I equivocated for a long time as, initially I could find no-one who had undergone the same procedure. My main dilema was the pro of reconstruction (as I do ike nice clothes, care aobut what I look like even though i’m in my 60s and feared depression), against fear of compromising the donor site. After further talks with the specialst nurse and micro-surgeon and my son’s friend’s friend’s mum, who had undergone the procedure, I went ahead and had the op on 5th July. I have been home for a week now, and am getting about fine.
Thighadora, as i call her, does feel strange and it is early days. Today is the day i can start massaging the scars and i think i have been deferrig this! I know what you mean by the upleasant dead arm. Mine has soewhat come to life and I think massage might be helping. I feel as if I’m going through an adoption process and the personification of my breast helps. A friend of mine who had th DIEP procedure told me that it was a case of re-inhabiting your body and i think I understand what she means.
I cannot help with the nipple Q. Mine had to go for pathological reasons, but I understand that Angelina Jolie kept hers, which is probably more likely in a preventative procedure. I was fond of my nipples, having breast fed all my children and having lost one nipple, i’m not sure i’ll accept the offer of having the other breast lifted, as i think this will involve cutting around the areolar and may result in loss of sensation.
I think you should talk to the surgeons and nurses and I hope you get a good response from someone who’s a bit further down the line with trearment. Good luck whatever you decide to do and I guess doors will not be closed should you want to change your mind.
At the moment i really do not regret my choice on the grounds that part of me feels a bit alien still, although i shall feel truly OK about it when I can crouch and dance again and Thighadora has been truly adopted.
Hi Faye
i had a mastectomy and recon on July 3rd using implant and Ti loop and its amazing. I had generous breasts beforehand, so my only issue is that my new boob, is about a third smaller, however have been offered further treatment later to ensure they match.
i did have a mini meltdown when the nurses were about to remove the dressing, as I wasn’t sure if I was ready to see it. However, I am so glad I opted for the recon at the same time now.
as a young woman, also with young children, I knew I wouldn’t be able to deal with nothing there after the after surgery.
wishing you lots of luckxx
If you are worried about numbness and it will be only prophylactic surgery, then may need to find a surgeon who is trained to do nerve-sparing surgery? Reconstruction can to be done by lipofīling only. That does not damage nerves so much. My friend did it and after 2 years the sensibility was fully returned. I do not know is it possible in England. In Germany, US, Russia, Italy, France doctors are doing. Could be in England as well.
Hi, I had mastecomy and letissimus dorsi breast reconstruction in August 2009 I was 34 at the time. I am now glad I went with this type of surgery and I am very pleased with how it looks? Unfortunately I do have numbness in my back although it is getting better in recent months.
Good luck with everything x
Hi Faye,
I too am in a similar position to you. I 'm on the verge of going to see some specialists about whether or not to have reonstruction. I’m getting really anxious about whether it will be painful, worth the pain and improve my life and my feeling of normality etc, etc. And, like you, what it would actually feel like physically.
I think it’s so difficult to get your head around returning for surgery when you’ve been through so much and feel like a couple of years of your life have been totally messed up by diagnosis and treatment. Obviously that could not be helped by us and at least we’re alive and I’m always so grateful for that. This asking for surgery in the hope of a return to some sort of body beautiful(? !) business almost seems like I’m asking for too much and fills me with fear I may end up suffering unforeseen consequences.
I had a mastectomy in 2011 and can relate to everything you say about the numbness and arm feelings. Mine seems to be improving slowly and I don’t want to do anything to disrupt this improvement or potentially suffer even weirder physical feelings.
I hope anyone with experience of reconstruction will respond with help and advice too.
Thanks for posting about it.
Hello I’ve just posted about my surgery next week. I have a huge family history although no BRCA. I’m wondering a few things about the op myself! I’m not keeping my nipples as think if you’re doing a job you may aswell do it “properly” lol! And will have tattoos about 6 months after surgery. I have seen a couple of ladies who had the operation and you couldn’t tell from looking at them; and even looking at the breasts themselves if you didn’t know you wouldn’t of been able to tell very easily.
I’ve got 4 kids; two are aged 1 and 3 and I’m worried about how little ill be able to do with them afterwards . Know I won’t be able to pick them up for a long while; but also wondering exactly what other people were able to do post surgery?
I know I haven’t answered any questions but wanted to reply.
Nicola x