Lump under nipple 3 years after nipple sparing mx

Radiologist and Oncologist called today and told me it is invasive ductal carcinoma. They are a little amazed because the chances of DCIS returning was less than 1% let alone the chance that it would turn into IDC. The pathologist called them with the results so they don't even have the actual report so I don't have the stage or anything. Onco just said its just about a centimeter and he feels my GS can excise with clean margins. Follow that with rads and reconstruction of nipple as both have to go now, sad to say. But I am happy to have caught it early. Will update when I know more but want to thank you ladies for taking the time to talk to me. I will make sure I post more as there was so little information on nipple sparing, hopefully it will help someone else.

I was diagnosed with DCIS 3 years ago. I asked for a mammogram because of work I do with Komen and the fact I pretty much tell people to get mammograms all the time so I didn't want to be a hypocrit. No history, 36 years old and I just wanted a baseline. They found a couple of small areas of DCIS and recommended lumpectomy. But again, in my work with Komen I have met so many women that have had recurrences and I just didn't want the chance of it happening again so I chose to do a double mastectomy.  I had the greastest plastic surgeon ever who was able to reconstruct my breast using the DIEP technique and I actually had nipples that worked and some feeling in my breasts not to mention they are absolutely beautiful. When I was getting the mammo and US yesterday, the techs even commented on how amazing they looked!

I followed up once with my Onco after surgery but he told me there was no need to see him again as I had decided on the mastectomy. No rads, just follow up with my GYN as needed for mammograms.

Last Friday, I found a lump and scoured the internet for info on recurrence with nipple sparing. Sadly, didn't find much. Found one that my doc wrote on skin sparing where zero patients in the study with DCIS had recurrences! It really is just a fluke thing. Onco thinks that when I had the surgery, some of the cells escaped from the ducts and decided to have a party, ie my new tumor. Crazy thing is, when they did the path on my mastectomy they found nothing not even the DCIS so they assumed it was excised in one of the 4 (yes, 4 biopsies I had). Guess they missed a couple of spots!

Nipple sparing appears to be safe for most people, but as with any breast cancer you just never know. If I had it to do all over again I probably would do the same thing again because chances really are low for recurrence with DCIS. I will say that I did find more people that had recurrences that were primary IDC but none where the primary was DCIS.