Paget’s disease of nipple

Annied

Hi, just recently diagnosed with Paget’s disease of nipple, anyone else have/had this? 

FLClover

Hi @Annied
Sorry, I’m not very familiar with Paget’s. I’ve read about it but that’s about it. I seem to remember it being more rare, that’s why maybe not many on here have experience with it. If you’re on Facebook, there’s a few pages for b ca affected there that you could join, that might be able to help. Let me know and I can give you the link 

iserbrown

"Types of breast cancer" https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

Pages is in the link above - 

Annied

Thanks @iserbrown, that link was actually the most useful info I’ve read. 👍 

Annied

Thanks @FLClover, I have joined two Facebook groups, which are helpful 😃

Sue F

Hi Annied

I had Pagets Disease of the nipple 10 years ago. It took quite a while to get a diagnosis, it was like excema around the nipple and so itchy. Eventually my GP sent me to a Dermatologist who did a biopsy. I then had a Mastectomy as the Surgeon said it usually comes from cancer cells in the breast. Pagets is rare and mine was  even more rare as no other cancer was found, so no chemo or radiation. i then had to get used to my new body as I did not have reconstruction. Best wishes to you. Sue

Annied

That’s a bit sad to read that you had a mastectomy when maybe just removal of nipple & areola might have sufficed? It’s really frustrating that the surgeons don’t know till op is done if cancer in breast or not (assuming nothing shows on mammograms etc) 

Sue F

Yes I was pretty disappointed about the unnessary mastectomy at the time but nothing I could do so had to just move on. All good now. ☺