Nipple saving re-construction

[Sciathos]

I've just been diagnosed with a small tumour- stage 1 and the nurse has told me if a lumpectomy is not possible (owing to breast size and size of tumour) that the full mastectomy will be done and I will automatically have the nipple removed. Is this always the case, is this what NICE guidance say the best evidence tells us? Has anyone had their nipple save don't on NHS

[carolinenailsea]

Sciathos, it seems to be that everyone has a different treatment pathway tailored to their circumstances. I had a stage 1 grade 3 cancer triple negative. I had chemo, lumpectomy and shortly to have radiotherapy. I know that every one is different and the treatment varies from one person to the next - no one else in my 'group' has had exactly the same treatment. It takes time to come to terms with the diagnosis and the treatment. Hopefully the consultant should explain more about what treatment they feel is right for you - they may go for a lumpectomy as the tumour is small. They wont do anything until you have given your consent. You could think about a second opinion if you remain concerned about the treatment. I can't help re NICE I am afraid. Best of luck Caroline xx

[Loulitte]

Hi Sciathos

I had grade 3 invasive stage 2, but also a BRCA carrier so they wanted to do a full double mastectomy. I didn't want to look like a patchwork quilt after the lumpectomy and also having had my lymphnodes removed. I asked my surgeon if I could have the nipple sparing surgery and reconstruction at the same time.

She said it was quite risky and a very difficult procedure as they don't know how healthy the skin will be once they remove the breast tissue and that the nipple could "die" if the blood supply isn't enough. I was willing to take the risk and happy to say that the procedure went very well. She did an amazing job - so well that no one could tell that I had a double mastectomy and it looked amazing.

Unfortunately my cancer returned a few months later and I had to have more chemo and surgery , but needed radiotherapy as well this time as it had spread into the skin as well. They did warn me that the radiotherapy could affect the implant. I continued using a mixture of vit E and bio-oil on my skin (something I do daily since I was diagnosed) . Happy to say that my boobies are still in tact and 5 months post radiotherapy , no sign as yet that it affected the implants and still looking good 😊.

Perhaps It really depends on the skill of your surgeon ...I was really impressed with mine. But it is like Carolinenaisea said, it is very much an individual thing and the nurses do give you the worse case scenario in case there are issues. Do discuss it with your surgeon and explain what you want.

Good luck and I hope all goes well!

Xx

[Sciathos in reply to Loulitte]

Thank you so much, this is encouraging! Do you have sensation ?

[Loulitte in reply to Sciathos]

Sadly not yet. I'm not sure if it will eventually return as the nerves grow back. The whole breast is pretty much numb, but at least it looks normal apart from all the recent scars .

[anne-57]

Hi, not sure if this helps but I wasn't given a choice about saving my nipple. However, I have had a nipple reconstruction and tattoo and to me I have a complete breast which "matches" the unaffected breast. X

[Hidden]

Hi I had mine removed as didn't want the risk of any cancer lurking there , but was offered to have it saved ? If the lump is near the nipple it may be that is part of the issue ? Or depending on what you are having as a reconstruction ? They can do skin grafts and tattoos to look like nipples. After a mastectomy the nipple is "dead" and just really for cosmetic purposes. Which was another reason I'm not bothered about not having one. You need to talk to your nurse about the different scenarios and possibilities.

Best wishes

Jo x

[Debs1962]

It will depend where lump is, I could of had lumpectomy but would still have lost nipple, I opted for mastectomy as didn't want radiotherapy which I needed to have if opting for lumpectomy.

Everyone is different as everyone cancer is different.

[Nixh]

Hi,Was offered a nipple sparing mx when initially dx but one of my tumours was near nipple and as high risk decided wasn’t worth it, was the best decision as ended up with Paget’s disease too.. I think as has been said before many factors are taken into account when they work out your treatment, the MDT will discuss and if they feel it’s not a good idea to keep the nipple then I would go with their decision tbh, keep asking as you need to get it straight in your head the reasons they wouldn’t try to save it.

All the best

Nix x

[brianna29]

I also was not given the choice. I was told that the nipple is part of the bust so they always remove it.

[Sciathos in reply to brianna29]

That's a shame if surgeons are doing things, just because that's what they have always done I hope that's not really the case and that in your case it was needed.

[julesab]

I had full mastectomy nipple also. I had reconstruction and reconstructed nipple and tattoo around. It looks OK though I have a scar line, good luck in your journey. As all said it individual choice and what the surgeon says 😀