Hi all,
My goodness there is a lot of emotion in these replies. I am okay with that. I like debate because I learn from what others say, and I learn as I think thru what I'm trying to say. But we can keep it polite and we'll all learn more. I might even change my mind, or you might change yours. Or we can just agree to disagree, and still respect each other.
My post did not contain my "opinions" about tumor markers as follow up after primary disease. I posted what the NCCN (National Comprehensive Cancer Network) guidelines advise as follow up after primary breast cancer. I've posted this before on this list, and have met the same resistance. There have been several large well-done studies that have shown no benefit to finding mets before symptoms herald them. These studies were judged well-done by the experts, not by me. Here is a link to the NCCN breast cancer guidelines. The short paragraph about follow up is on the left side of page 23, and the references are at the very end of the long (100 page) document (it takes awhile to load, be patient).
http://www.nccn.org/professionals/ph...PDF/breast.pdf
You can give anecdotes all that you want about "early" detection of mets making a difference, but there is no way to prove nor disprove whether it really made a difference or not. We can find a similar number of anecdotes about widespread mets responding well, too. And vice versa, as I said in my first post - we can find anecdotes of minimal, "early" disease that responded to nothing.
I think that I mentioned several times in that first post that brain mets are in a different category, especially for those who had herceptin as treatment. There is value to finding them early and small but I don't think the recommended way to do that is with TM's - I think it's with brain scans. And even with HER2+/Herceptin, brain mets are an unusual site of first recurrence so it could still be argued that after primary disease there is unlikely to be value to brain surveilance. I don't think that I'd argue with anyone who wanted regular brain surveilance, though.
The way to know these things (treatments and plans of care that are of benefit) is to do large studies, and to do them well. That has been done for this issue (follow up after primary disease) and these are the answers. I don't see how you can argue with that. (but if you want to, I'm willing to continue the polite debate).
I think that the reasons for this truth are very important. We do not know the reasons, although there are lots of fascinating theories that could explain the dynamics, and research continues to try to find the answers. Perhaps they will find clues within this question (why doesn't it make a difference to catch mets "early") that lead to understanding and perhaps that understanding will lead to treatment that will make all breast cancer - both primary and mets - curable. But I digress.
Debbie Laxague