Nipple Reconstruction - Advice Please

Hi

I had a Mastectomy with immediate LD reconstruction (no implant) last October and finished treatment including radiotherapy in June. I saw my consultant last week who asked about doing the nipple reconstruction. My immediate thought was that I feel like I have been through enough already and not to bother with it but since then I have been thinking about and think I might go for it. He said he will make the nipple from the skin that is already there.

I would appreciate any thoughts or advice anyone can give and in particular I forgot to ask what sort of care is needed just after it is done. For example, does it have to be covered with a dressing and how long for and is it ok to get it wet straight away. As I am typing these questions they sound a bit silly but are things that I have been wondering about. Also, has anyone had any problems with a nipple recon.

Thanks

Love Lollie

Hi Lollie, i had the same op as you, but mine was in June, am seeing my surgeon in october to discuss the nipple recon, i am looking forward to having it done, if you go to www.cancerbackup.org.uk and go to the reconstruction section, it explains how its done, and shows examples, hope this helps

Alisonxxxxxxxxxxx

ps, i have an implant, but not had it pumped up yet

Hello Lollie

I had LD reconstruction 18 months ago, I had an implant though. Like you I didnt know whether to bother with nipple reconstruction, I’d had enough of surgery, but I did 6 months later and it was a piece of cake, I didnt even have any form of anesthetic, they used the skin that was already there. There was no after care really just the obvious of being careful and it was covered for about a week. I recently had it tattooed so job finished hopefully, while its not perfect it has made a big difference and was worth having done and I haven’t had any problems.

Best of luck with whatever you decide.

Jan

Hi Jan, thank you for telling us that, its made my mind a lot easier about my nipple recon, i think its a bit ungrateful to the surgeon, god knows, they do such a good job for us, we really are lucky i think

Alisonxxxxxxxxxx

Hi girls, just butting in here really as only just had ld reconstruction with implant last week and and not at nipple stage at all yet? How long do they normally offer nipple after surgery? Also I was told that they might take skin from inner thigh for nipple - anyone else been told this as well?

Alison - you mention you haven’t been pumped up yet? Are they waiting for swelling to go down or are you happy as it is? Obviously mine is very swollen at moment and larger than other side - can’t imagine it needs pumping at moment but I’m sure it will change over the next few weeks!! I have got to go weekly to recon clinic - my port is under the skin though and I imagined it would be sticking out?Is this the same for you?

Thanks Sarah x x x

Hi folks

I am about to hit all this stuff when I have my mastectomy with immediate recon in mid October (implant expander) so it is great to follow all the news and comments. Does it hurt any more or less than WLE and lymph nodes? I’ve already had that!! Is anyone also having to have chemo or anything and how will they decide? MY cancers have all been grade one (no lymph nodes) so far from the tissue samples excised but who knows what when they remove the breast! The surgeon said after the last results ’ Well Mrs J, the more we do to you, the worse it seems to get’ ! Charming! ANywaY, are you all happy so far with the implants?

All the best

Ruth x

hello everyone

first time on this site!

just to let you know that i had my nipple reconstruction nov 06 just 6 months after breast reconstruction , so glad i had it done surgeon made a great job,i only had the dressing on for a week, the only down side i wish he had made it a big bigger .cos when its cold it doesnt stand out !! but much better than having false nipples.

hope this helps

Hi Folks

Also sorry to butt in on this conversation - but you talk about implant expanders - my mastectomy/LD recon is on 27 September and I am having an implant also - do they all need to be expanded? I thought it came ready filled - maybe there are two types?

Many thanks

Lenise

Lenise

What the muscle from your back is moved to the front, it is there to hold the implant in place. In order to achieve a certain size and symmetry the back muscle, now at the front, has to be stretched to accommodate whatever size of implant you have. They are filled to a point during your op but often need a top up or two afterwards. They can’t fill it up in one go or you’d be in agony from the stretching so it’s a gradual process and eventual they slightly overfill it so that when they let some out, a time later, it will have a bit more of a natural drop/droop.

Hope this helps.
D

Hi Dahlia

Thanks for the info.it does help - god I wish it was all over!

Love Lenise XXX

Thanks Dahlia, I had my op last Tuesday and feel great considering but have had expander implant with back muscle and was wondering about filling up!! My port is under the skin and not sticking out which suprised me. Is that normal?

Ruth, I had WLE and lymph nodes 4 years ago and had mastectomy with ld flap and implant last week. It isn’t necessarily more painful but I feel more restricted with movement and more swollen and tight. My surgeon put nerve blockers in my back so I haven’t had any pain there but feels really weird - like lying on a water bed!! Feeling very cautious about moving too much as don’t want to pull any stiches. The advantage we have I think is that lymph nodes have already gone so don’t have to have extra drain for them and all the swelling that goes with them!! Not sure about chemo yet - on mamo it was dcis so fingers crossd not invasive otherwise I think that chemo beckons me again.

S x x x

Hi Sarah

Yes, that’s normal, the skin will be over the port. Eventually, and I means some months hence, you should get the choice of having the implants removed and replaced with more natural shaped ones instead of just the rather round-ish expander ones. If you opt to keep what you have now then they give local anaesthetic and cut the skin at the port and somehow seal it off ans remove the top bit that sort of sticks out a little and catches on your bra etc. If you opt for the other implant (the swap) then there’s no port as far as I understand because the implant will already be filled to the level that your present ones are.

I stand to be corrected though.

D

Thanks for that info Dahlia, didn’t realise it would be a few months until port was finished with ( I must learn to be more patient!!!)

I think my implant is a Becker? which is a silicon gel one with an expander bit in the middle which is permanent and doesn’t have to be replaced.Does anyone know if this sounds right?

Sarah x x x

As I said previously I had LD reconstruction with implant but I never had to have it expanded. Maybe it depends on how big you are, I am quite small and I just had the op with the implant put in, I assumed everyone having the LD reconstruction would be the same. Seems I am wrong.

Jan

Hi All

Thanks for your replies and especially those who have already had their nipple reconstruction for sharing your experience. I think I have decided to go ahead and have it done and will be on the phone to arrange it in the morning.

Thanks again.

Love Lollie x

Hi All, Thank you for all that info Dahlia, i think my implant is permanent, they haven’t said anything about swapping it, i could have had it pumped up a bit last time i saw the surgeon, but after having a load of stitches removed i couldn’t face anymore at that time, but it is a little bit smaller than the other, so will probably have it done when i see the surgeon in October, but am happy with it

Alisonxxxxxxx

Alison

Mine are permanent too but there is a choice to have them swapped for the more natural shaped ones - maybe you have these already. I think (not sure) you escaped chemo and radio therapies so the state of your skin will be much better and that has a bearing on these things too - my skin is like paper thanks to radiotherapy.

Cos I’m thin I needed the impant to bolster the little bit of flesh that they managed to harvest from my back.

Hello Ladies, sorry to butt in but I didn’t fancy surgical nipple recon and was reffered to a brilliant man for latex nipples! His name is John Buckle, he is based at Wexham Park Hosp in Slough but there are other people trained in the "art of latex nipples. Just Google his name to see his web-site, although his pictures on there are out of date and his techniques and results have improved. Also for more info if you search on this site for “Latex nipples” it should come up with a posting I made with about my nipples. I still think they are fantastic and a great alternative to surgical, or commercially purchased stick-ons!
Good luck in whatever you decide to do. Remember the golden rule…do what is right for you.

I saw the PS registrar today. He said my consultant does the nipple recon by taking a bit of cartiledge from the rib and then building the skin over it. I have to say I wasn’t terribly keen on that idea! Has anyone had that done?

I was hoping to actually see the consultant today to discuss a few things regarding forthcoming lift/reduction/nipple recon,he said he wanted to see me before the op, but he wasn’t in clinic today. What a bloomin’ waste of time - I’ve got to go back again now, I don’t feel comfortable just seeing the PS on the morning of the op.