Nipple sparing mastectomy then dcis returns

mrsriley · July 2014

I had a nipple sparing mastectomy on my right breast in august 2013. With tram flap reconstruction a week after my 40th birthday😢My presenting symptoms was bloody nipple discharge. The dcis was 10cm grade 2. About two months ago I noticed blood on my pjyamas and sure enough there was more bloody discharge. I got an appointment with surgeon and he said it was very unlikely to be anything alarming. They did a needle biopsy and it came back clear they also did scan and showed nothing alarming, but the discharge showed blood again. I said I wanted nipple and areola removed for peace of mind. The results came back after surgery that there was 6mm dcis. They only got 1mm clear margins and would prefer 3 mm so will be keeping a close eye on me and getting scanned every 6 months instead of every 12 months. I was on holidays when results came back and they couldn't say anything over the phone. Now the surgeon is on 3 weeks leave so I got results from report sent to my gp. Can anyone help me will information or if this has happened to them

Thanks

deb1973 · July 2014

I am so sorry you are going through this, but am extremely proud of you for persisting when you knew something wasn't right.

However, I'm confused why they gave you a nipple sparing mastectomy in the first place. Like you, I had bloody discharge, 10 cm of DCIS, age 39 at diagnosis. My surgeon said the bloody discharge meant there was nipple involvement so a nipple sparing mastectomy was off the table.

That sucks that your surgeon is away right now. Do you think you might consider a second opinion? I've heard in some cases with large amounts of DCIS plus close margins, radiation is an option. It may not be an option you want to take, but it might at least be good to hear the pros and cons. I've also heard that some ladies with close margins near the skin have had the skin nearest the cancer removed.

So incredibly sorry you are going through this, but very glad you trusted your instincts. Please let us know how you are doing.

Sending you lots of good energy,

Deb

mrsriley · July 2014

hi there

Have been doing a lot of thinking. Not sure I will be ok will watch and wait and get scanned every 6 months as scan showed nothing up before I insisted with surgery so why would it show anything in the future. I am visiting my gp this am for chat as can't wait 3 weeks to see surgeon. Will get her opinion and am writing a long list of questions. Don't understand the softly softly approach as my idea would be to throw all you've got at it then you can have no regrets

Thanks for your reply

Wishing you continued good health

Cheers

Nicola