[chrisy]

Hi Her,
My history is similar to yours, although beginning in 2002. I got the same answers you did upon my recurrence. My 2nd opinion onc who is very well respected in the BC community noted that they just don't know all the answers on how this happens - and that it may have already spread somehow. At that time (early 2002) they didn't test DCIS but she said even if they had, at that time they probably wouldn't have offered chemo and herceptin was not in the picture then either.

Over the years, they have learned more - I've followed the posters at San Antonio and they are starting to learn why SOME DCIS can spread - someone recently posted an article here on this point. So although the cure rate for DCIS is 98%, it is higher in certain situations - as with invasive cancer, not all DCIS is created equal.

For me, reading that article helped me and my husband accept that this might have just happened - not because of mistakes we or my doctors made, but because the knowledge at the time was incomplete. Or as Dr. Hope had said "it is just the nature of the beast". Your Stage IV recurrence may have been from the small invasive component before it was detected, not from the original DCIS. You will probably never know.

There are others, although we are a rare breed, who began with DCIS and then recurred. I know of at least 2 others on this board - Kim from Connecticut who posts under mamacze and our dear nicola who passed away last year. I know Nicola struggled with these questions as you do, because we talked about it.

I certainly share your disappointment - for both of us. For me, it has been more helpful to try and release the past and focus on the future, and the new research