[Ginagce]

I'm sorry I can't be more specific about this but I too was diagnosed with DCIS in left breast and LCIS in both breasts in 1997. At the time my husband was just getting out of rehab after a combination of hospital and rehab stays of 7 months. I was working full time an hour each way from our home and at that point was the sole supporter and insurance carrier for both of us. Needless to say life was rather crazy. I took a lot of notes and have all the specifics but have not been able to find them yet. I saved this post hoping I would by now but again, things got hectic....and you know the rest.

At the time I did a ton of research on DCIS (all I could find anyway) and got 3 opinions from the 3 major NCI cancer centers in Philadelphia. One said get bilateral mastectomies as this stuff is "a bad actor" if it returns; another said have lumpectomies and do nothing else;and the third said lumpectomies and radiation on the DCIS side. Basically, DCIS was relatively new on the scene and most things I read (Susan Love etc.) said that it was more or less a crap shoot as they didn't find it much with older mammogram technology.

I considered the bilateral briefly but realized very quickly that I could not take care of my husband if I had that kind of surgery.

I opted for the lump's and rads.

In 2004 a mammogram found a 1cm tumor in my non-radiated side. Bilateral mastectomies revealed another tumor, similar size, in the radiated side. This one had not shown up on the mammograms. A sentinel node biopsy done at the time of the mastectomy surgery revealed spread to my lymph nodes on the radiated side.

The original statement that if this "stuff" returns it's a "bad actor" was correct.

My stats in 04 were ER+ PR+ and Her2+.

After bilaterals, chemotherapy and coming up on 1 year of herceptin, I am officially NED.

I hope and pray that I remain so.

If it will help you to know my pathology info from 97, I will continue to look for it. Please let me know.

Ginagce