Nipple Reconstruction
Nipple Reconstruction Any thoughts ladies on keeping nipples or having them removed at time of bilateral mastectomy and reconstruction ?
Not sure of risk factors at the moment until I see my surgeon 26th September…
Does anyone have any idea’s, I have been told vastly different % from 3% to 40% risk…
Thanks
Lisa
lisa HI lisa,
I was advised to do away with the nipples but my risk might be higher cos of the braca1 gene.I was told that the risk was still there if I kept them.I have now had nipples reconstructed and they are quite good but it feels strange sometimes cos they look real but don’t and can’t feel the same cos there is no sensation now and you have to accept that.
luv ruthine x
I’m keeping mine Hi Lisa,
In a fortnight I will be having a bilateral mastectomy with reconstruction using expanders (I have BRCA1)
I will be keeping my nipples.
My surgeon wasn’t overly keen as he says there will be a slight risk as there will be some breast tissue left behind - but i insisted!
I have done rather a lot of research about it and I have found in most reports that the risks are actually quite small. I also made the point to my surgeon that if something should develop in the remaining tissue it will be found straight away as it will be just under the skin. He agreed with me on that.
I’m happy with my decision to have the surgery and settled on keeping my nipples but i am dithering over whether i should have a lati Dorsi reconstruction or expanders with implants. There are a lot of postings from women who’ve had the LD reconstruction but are experiencing problems. There are very few postings from women who have had reconstruction with expanders & implants (I am assuming that they don’t post after their ops because they are completely happy with the results).
Has anyone out there any info for me?
cheers
Gingernut
Hi Gingernut,
I too have done lots of research. I have BRAC2, and am waiting for my first appt with surgeon to discuss options etc (26th Sept) and am hoping he will give me a date for surgery, want it done asap.
I think I am almost certain that I will be having tissue expanders and also keeping my nipples. I have kind of ruled out all other sugery as I don’t want anywhere else on my body touched if possible. If I were a bit older and had children I may opt for tram, as you get the free tummy tuck !
I have spoken to two ladies who have had expander surgery and both very happy, one lady several years ago and one quite recently, I am not sure why not many people post re expander surgery, I haven’t had many replies re nipples so I am not sure.
Last week I spoke to Becky measures (girl from tv programme) her picture post surgery is in this months cosmo. Her surgeon is the surgeon I will be seeing, she was really happy to chat with me and it was helpful. She said that our surgeon does a lift and scrape procedure, trying to remove as much tissue as possible and she was 7% risk, but if and big if she got cancer in her nipples or just below the surface, there would be seen very quickly and because there would be no breast tissue it would be hard for it to spread.
If you would like to speak to Becky I know she is more than happy to speak to people, if you want to private message me on the other site and I will get you her phone number.
Take care and let me know how you get on.
Thanks
Lisa xx
thanks Lisa Hi Lisa,
thanks for getting back to me.
I am reassured by your information from Becky it confirms my decision thats for sure.
I also watched the programme about Becky - she was great wasn’t she, so matter of fact about it all.
I am 47 so I am not expecting as good a result as her - the skin and tissue just doesn’t respond to surgery in the same way as you get older.
Was it a plastic surgeon who did Beckys Op (and will do yours) or was it a general surgeon?
My surgeon specialises in breast surgery but is not a plastic surgeon. I don’t know whether i should insist on seeing a plastic surgeon or not so i have decided to stay with this one for the mastectomy and expanders. I will see how things are looking when i’m fully expanded and if i’m not happy with the results i will consult a plastic surgeon before the implants are done.
The friends of yours who’ve had implants - did their breasts stay very firm (like tennis balls) or did they soften up after a while? A member of my family has had the op and hers are quite hard though they look really good.
I think its probably a trade-off really, ‘looks’ versus ‘feel’.
anyway i’ve waffled on as usual !
thanks again for your response
Gingernut
The surgeon is a plastic and breast surgeon. I am not sure re general or plastic, it might be worth asking though and apparently you have the right to go somewhere else if you aren’t happy, annieannie is travelling from somerset I think to see my surgeon (manchester)
Becky said that with the expanders in she thought that they felt hard, now she has the implants in she said they are relatively soft, and don’t feel like tennis balls at all. The other girls are softish too…
I thought she was great too, and the fact that she took the time to speak to me and said she would gladly speak to anyone if it would help I thought was really kind.
No worries re the waffle, I do it all the time !
Let me know what you decide on anyway, are you still thinking of LD too ?
Take Care
Lisa xx
quite settled on implants Hi Lisa,
I am now settled on expanders with implants. It was the ‘hardness’ issue which was giving me the most doubts but after reading your last reply i’m settled about that now too - thanks for that, i really appreciate your help.
I am still waiting for a date for my op and it’s driving me mad. I had my pre-op on 31st August and was told they are trying to ‘fit me in’ before the end of September. They have a target that patients will not be on the waiting list longer than 6 months, i am now 5 months and 29 days!!
I’ve phoned a couple of times about it but still got nothing definite - its really unsettling. I am just expecting a phone call telling me to go in the next day.
Its a bit like waiting to go into labour - my hospital bag is packed and ready to go!
On the positive side - i am really looking forward to the time off work. I suppose the longer i wait, the more likely it is that i will not have to go back to work until after Xmas and New Year.
I am very lucky with my employer - I can take as much time as i need and i can probably work from home for a while afterwards too.
I just wish they would ring with that date…!
Gingernut
Hi Gingernut,
Glad to be of help, make sure you ask though, perhaps there are different type of implant or maybe is depends on the size.
How awful to have to wait and to be given a moments notice. I have been told that I will be given a provisional date next week, but at the last minute this could be cancelled if there is an emergency. Totally understand and appreciate why, but worried about getting myself prepared to be dissapointed.
I am glad your employers are being good about things, I wish mine were ! Don’t get me wrong my (male) boss has been good up till when I asked about being off ill and how it will affect my pay, he doesn’t seem to be able to make a decision which frustrates me, as far as I am concerned he doesn’t need to refer it anywhere he is able to just make the decision. Basically I am a sales manager for a multi national/global company and have worked for them for 17 years holding a relatively senior position, working long hours and being totally committed to my job. I am paid a basic wage (which is safe) and commission/bonus. They are umming and ahhing as to whether my bonus will be paid. I know it is trivial at this time but it is more a matter of principle now. I will just be able to manage on my basic salary for a couple of months, BUT why should I. I am single and have a largish mortgage to pay. I think it is unfair and that they should support me financially, I have had 5 days sick in the last 4 years. Am I being unreasonable ? My boss has referred it to MD (another male). I will have to refer to my union if I need to. I really shouldn’t be worrying about this I know but I can’t help it. It isn’t a huge amount but means a lot to me at this time. Sorryt - totally off track and ranting - makes me so cross - arrrrgh ! Do you think I am being unreasonable ? Maybe I expect too much ?
Anyway take care and let me know how you get on with your date…
Lisa xxx
Its not unreasonable Hi Lisa,
no you are not being unreasonable. if you worked for a small company and it would cause them real hardship to pay someone else to cover in your absence then they would have a point. Clearly this is not the case.
I hope you can reach a solution without having to fight for it - that just causes awkwardness when you go back.
My employer is really supportive with anything related to cancer. We don’t even go onto half pay after six months (not that I expect to be off that long of course)!
My problem is the uncertainty of the admission date - I am currently avoiding some particular tasks in case I am not there to finish them. Its very frustrating.
I have also been quite bothered about who knows the nature of the surgery. I work in a very male dominated organisation where men talking to you whilst staring at your chest is not uncommon. I dread the thought that they will all be checking me out to see how much my boobs have grown each time they see me!
That is why I hope to work from home for a while after the surgery. I want to be fully adjusted to the new me before i have to face the scrutiny!!
There are soooo… many things to think about and to come to terms with - before we even get under the knife aren’t there?
Gingernut
I too am worried and have been worried about what to tell people. It took me 3 weeks after my test result to tell my best friend from school.
At work I told my boss a while ago, by accident really, he caught me in tears. I then had to tell my other boss (it’s complicated) as he was causing a fuss about me not going to a sales meeting, I think I told him to shock him as I wanted to make him feel bad, he did feel bad then I felt bad - god it is hard. Anyway I think the point I’m making here is that I too work in a male dominated world, my MD has been known to make comments about my boobs (34e) in the past. On the positive side he has known me since I started for the company and therefore feels fondness towards me, he was apparently very upset for me when my boss told him. I am hoping for a positive outcome or even a compromise. I will have to see, my boss is seeing the MD next week, I just don’t know why he can’t speak to him on the phone and tell him rather than ask him ! I think he is more worried about having to take on some of my workload !
I also worry about telling my staff, they might laugh, and think it is funny, (I am a sales manager and have to make decisions that sometimes make me unpopular) but I am human too ! I have tried to be quite light about things even though sometimes I feel quite bad and angry that this has happenend to me. Whilst I also feel grateful and lucky to have the choice if that makes sense ?
My other concerns are about meeting men afterwards, I am 32 and single and worried what I will say. I know if they are “nice” they will understand but it is still a really hard thing to have to face, I also appreciate it is difficult for women with partners too though.
At the weekend I made a brave step and told two of my male friends, their reaction was great and it made me feel a lot better.
Anyway ramble ramble !!
Take care
Lisa xx
Ramble on… Hi Lisa,
Its really great to speak with someone who understands.
I know what you mean about making light of it at work - i have done exactly the same. Its absolutely amazing how many people think it will just be like getting a free boob job on the NHS. Even one of the students at the hospital asked me why i didn’t just just have them off and get a nice new pair. She looked a bit shamefaced when i answered that i didn’t want new ones i just wanted breasts that wouldn’t kill me!
To be honest i really don’t have any angry feelings any more. I am a very positive person and since my sisters death from BC 12 years ago i really cherish my life.
I have known for five years that I have the BRCA1 gene so I’ve had plenty of time to come to terms with it.
For at least four of those years I never really thought about actually getting cancer - i just felt lucky that if anything did start to develop, with all the screening, it would be detected and dealt with in the early stages.
I had a hysterectomy in 2002 because my ovarian screening was showing worrying results - what a relief that was. No more heavy painful periods or mood swings - a huge inprovement in my quality of life!
It is only as i have got older (I’m 47 now) that i feel the risk of getting breast cancer is probably increasing,so rather than have it looming like a dark cloud, i’m getting rid of the problem. That’ll be it then - everything sorted.
That’s if i ever get a damn date to go in!!!
Gingernut
It is great to be able to chat, I have met a fair few ladies on here and on the other site and we are hoping to get together at some point, which I think will be really good, there aren’t any support groups for ladies such as us, and with so many of us in a similar area it should be relatively easy to organise.
I am very positive about this and know how lucky I am to be able to do something about it. I get silly comments too like - you always wanted smaller ones anyway - In other words so whats your problem. I suppose in some ways it is my fault because I make light of it, I just don’t want people to worry (especially my parents) or feel sorry for me. But on the other hand it is something MAJOR and is more than a boob job, particularly psyhcologically, having to make all sorts of decisions etc.
My ovaries aren’t such a problem for me as because I am BRAC2 and the fault is on the outside of the chromasome I have approx 10% increased chance and certainly not to worry until I am over the age of 40, so hopefully I will have had children by then, then they will be coming out too ! May as well go the whole hog !
I just feel I want my boobs gone asap, so I don;t have to worry anymore then I can get on with my life. My youngest relative was 33, so that was my marker I suppose. Now I keep worrying that I will get it whilst I am waiting for surgery.
Hopefully you won’t have to wait too much longer, where are you having the op done ?
L xx
Whoopeeee I got my date!! Hi Lisa,
Well, I finally got my date today - I go in next Friday 29th and have the Op on 30th. People in work think i am crackers - they said I am the only person they have ever come across who is delighted to be having surgery.
Ha, thats because they don’t know what its like to live with the curse!
I am having my Op at Liverpool Royal Teaching Hospital - that is where the Linda McCartney centre is, where i attend the Family History Unit.
I haven’t got the details yet - that will be in a letter which is on its way apparently.
The date is a bit unfortunate - it will be the 13th anniversary of my sisters death from breast cancer - still i’m not going to dwell on that - she would still be here today if she had had this op.
Gotta go now, I’m off to my friends house to celebrate with a few glugs of chilled wine.
Tina X
What Relief Hope you had more than a few glugs of wine o celebrate !
What great news, must be a relief to get a date after waiting all this time…
How unfortunate about the dates colliding, like you say, you are doing the right thing for you.
So pleased for you.
Keep in touch and let us know how you get on.
I am going to organise a get together through the other site, so keep an eye out and if you are up to it you will be able to tell us all about it.
Take care
Lisa xxx