Confused...

ellen1dg

Hello everyone.  I was looking at another forum here.... and noticed one woman's diagnosis (that show up at the end of our post) was "LCIS, Stage IV, mets, ER+, HER2+".  I am still trying to get  good understanding of this LCIS condition/diagnosis, but how can it be stage IV?  I thought it was not actually cancer!  Maybe it is a typo, or maybe part of her diagnosis was missing??  It just caught my eye and has me a little concerned again about this all.It has been a lot to learn in a short period of time.   I was diagnosed the end of Sept, but am getting a second  opinion at Dana Farber here in Boston just to be on the safe side and give me that extra peace of mind.

Anonymous

ellen-----she must've meant that she had LCIS along with her diagnosis of stage 4 invasive bc, as LCIS, by itself, is always stage 0.

Anne

Beesie

Ellen, one of the things you learn on this board is that you can't always believe what you read. It's not the anyone intentionally tries to mislead others, it's just that we are patients and not medical professionals.  While some of the women on this board have a very good understanding of breast cancer and their own diagnosis, others don't.  I can't speak for LCIS but I have a lot of experience in the DCIS forum.  Pure DCIS is Stage 0 breast cancer.  Always.  DCIS is a pre-invasive cancer and those who have pure DCIS cannot have nodal involvement.  Period.  Yet there are lots of women on this board whose signature lines say DCIS Stage I or Stage II or even Stage III.  Or it may say DCIS Stage 0 with 2/5 nodes.  And in my years on this board I've seen quite a few women who have progressed straight from DCIS to mets.  The odds of that actually happening are about 1 in 10,000 but it seems to happen to a lot of women who post here.  Is it what really happened?  In every single case where I've been able to get more information, the answer is "no".  What actually happened was that the original diagnosis wasn't pure DCIS - there was some invasive cancer as well.  Or perhaps after the original diagnosis of DCIS, there was a recurrence and the recurrence was invasive.  There's always more to the story.

Just as it is with DCIS, I'm sure that the person who has "LCIS, Stage IV, mets" left out parts of her story - and perhaps is not even clear about the significance of these omissions.

ellen1dg

Thanks, that all makes sense and helps me feel more confident in my LCIS diagnosis.