Hi Gemma
Please get a second and third opinion if needed. Also make sure that the surgeons you are seeing actually perform nipple sparing skin sparing mastectomies. Are they travelling to the latest conferences abroad to keep up with the new types of surgeries that are being performed? Some very established surgeons with really good reputations don't practise it. If you don't know who to go to contact a breast care nurse attached to each major hospital in Canberra. There is usually a support group (attach to each private breast diagnostic centre who are there to assist with decisions like this. I just googled there is a group called bosom buddies who you can ring. Ask specifically about nipple sparing and who is doing it in Canberra. Otherwise the breast care nurses are not at liberty to give out the information that you want. Also make sure that the oncologist you are seeing works directly with a plastic surgeon. For instance, my oncologist only worked with one particular plastic surgeon and hence do a lot of breast reconstructions every year.
I have not been tested for the gene however when given my diagnosis of dcis early breast cancer was told leaving the skin (skin sparing mastectomy) has a 1% risk of return. Keeping my nipple was a 3% risk of return in the dermal layer.
I hope this info helps, if you can't get what information you need keep going until you are satisfied. Let me know if I can help in any other way and good luck.
Jen
