Hi Ashleiegh,

A very warm welcome to our forum,

I am so sorry to hear that you have had all of this bother at such a young age. Whether or not to stick with your nipples, tends to be a very personal decision and one that only you can eventually make. I have had two bouts of breast cancer in the past 13 years. I initially had a lumpectomy, then a year later, I had a double mastectomy. Unfortunately, I was not a suitable candidate for reconstruction, as a result of previous, non-cancer related surgery and problems with anaesthetics. I am now left flat-chested and use a variety of prostheses for different activities. My only difficulty has been in finding a natural looking nipple, on any of my prostheses. They are either non-existant or miles too pronounced.

This may not happn with you, as I expect that you could still stick a silicone one (I've never tried one, but they don't look too bad) on to your breast, whereas, I need a breast there first and find that sticking a silicone one on to silicone or foam doesn't always work. What to do depends upon how much you value your nipples. You don't need them for function any longer, but I expect that you still have sensation in them. I do miss the lack of sensation in my nipples, but I can live without it.

I can understand how painful these infections are and am sure that you seek a permanent solution. If this is the only way to be certain of no rrecurrence, perhaps you would feel that you had done all you could to prevent further infection, if you had the nipples removed? I can imagine that you might find it difficult to come to terms with a recurrence, if you didn't have them removed. 

I know that you are young and that appearance matters, but I wouldn't let that be your main reason for having them removed. Your surgeon should be able to give you more data, on how successful the operaton would be, with and without nipple removal. He may only have ever seen two older patients with the same condition, but surely other surgeons have also treated patients with the same complaint? There must be research papers, which would help you to make an informed decision on this matter.

My cancer is a rare one too. Only 1% of people get my type of cancer, with the result that I found it very difficult to get any bona fide advice. It took me quite some time to get the right information, to allow me to make the right decision and I sincerely hope that you can do this too. Have you got a date for your surgery yet? Please keep in touch and let us know how you get on and remember, that we are always here for you.

Kind regards,

Jolamine xx

Please keep in touch and let us know how you get on.

Hi Jolamine,

Thank you so much for you beautiful reply and I'm so sorry to hear about everything you have gone through! It is aweful that these things happen to the nicest of people. I have had a few recurrences of infection and it does really bring me down unfortunately because I just keep thinking that I don't want this. I was also born with both nipples inverted so I don't feel much sensation anyway and with me being very conscious about them being inverted it's always been a hidden part of my body (if that makes sense). 

With my surgeon, he wants to try removing my ducts first from both nipples to see if that stops the infection, if not then it would be removal of nipple so from my understanding he is not sure how successful the first surgery will be. I suppose this is an added worry for myself because its multiple surgeries when I could just go for 1 surgery and remove everything but then am I jumping to quickly? It's so difficult trying to find someone else who has experienced something similar because it's so rare so it's nice to know that I'm not the only one in this situation. I'll have to do some more digging! 
 

No date for surgery yet just waiting for appointment letter to come through post but I will most definitely keep you updated. Thank you so much for your kind words, it really does mean a lot and has made me feel a bit calmer about it all. 
 

Take care

Ashleigh xx

Hi Ashlee,

I didn't realise that you had the choice of doing this with staged surgeries. There is always the chance that the first surgery works and you may not need to have the nipples removed.

Please let me know when you get your dae for surgery. I am always here if you want to chat.

Kind regards,

Jolamine xx