DCIS to IDC

I cannot speak to your experience but I am bumping this up to the top again in hopes someone will reply.

good luck.

flash

I had the exact same thing happen to me.  I was diagnosed with DCIS in June 2006 and had a mastectomy at that time.  I found a new lump in the same breast which turned out to be IDC in Aug 2009.  I have since had a lumpectomy, 6 cycles of chemo, and 36 rads and thank God a clear PET/CT.  I have one more Herceptin treatment next week and another PET/CT scheduled for Nov.  I am also ER/PR- and HER2+. It was not easy but I made it through.

I have not been through it, but I fear it.  Just had mastectomy for multifocal, multicentric DCIS and am undergoing radiation due to two foci of DCIS that were just 0.1 mm from chest muscle, also tiny margins at the skin.

Suzy, how was your discovered?  I think my oncologist plans to continue mammograms on the reconstructed breast--wants to start right after rads to get a baseline.  have you had mammograms on the mastectomy side?

Angie, I read your bio and previous posts and see that your lump develeped between implant and armpit, hence the lumpectomy...wow.  So scary...my onco feels I am at high risk for recurrence because DCIS was large, fast growing, comedo w/necrosis, and presented with a palpable lump where breast meets ribs.  How are you doing now, Angie?

Yes, you really feel betrayed when something like this happens.  I think it happens more than we think.  I had just finished my reconstruction and was moving on as best as I could when I found the lump.  My surgeon had just done a CBE two months previous and I always felt he was very thorough.  My initial DCIS was very widespread with comedo necrosis and I had a SNB which was negative.

By the time I had an ultrasound for the new lumps they could tell it was in the nodes. I had 15/19 nodes and there were actually 3 lumps. Thanks God my Pet was clear.  I also had a circulating tumor cell test before I started treatment and they found no cells in my blood. My oncologist was very happy about that. I finished a very aggressive course of Chemo consisting of Abraxane, Carboplatin, and Herceptin.  I had 6 cycles consisting of 12 treatments (6 treatments of all 3 meds and 6 treatments of the Abraxane and the Herceptin).  I worked the entire time.  I would take off the day of the big treatment because it took longer with the drips for allergic reaction, anti-naus, and steroids.  Other than that I probably missed a total of 4 days because of not feeling well. It was very doable. Loosing my hair was the worst part but it has grown back so pretty. My PET/CT after Chemo was great and I have one more Heceptin and Zometa treatment next week.  My onc was very shocked that mine returned and I really think the Her2 was the culprit.  We really went after it hard and so far so good.    Stay positive!!!

Risk of local recurrence is between 2-5% after mastectomy. There is always some breast tissue left no matter how good the surgery.

Suzy, how are you doing?  I would imagine you are well into chemotherapy by now...I appreciate your having shared your situation here because it raises awareness for all us DCIS mastectomy patients.  I know I'll be more vigilant after hearing your story and Angie's.