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Donna,
One more bit to add to the rest. Today was my next-to-last herceptin and the last draw I would have for tumor markers--I've had three this year and this would be the last. I have primary breast cancer with generally higher than average tumor markers: 27-29 is 37; started at 41, went to 45 (then had PET, nine months ago), and then down to 37. Don't know where it is today.
I've had two HER2 serum markers done. First was 16, next was 11.5 (couldn't get enough blood for today's, so I'm taking it as a sign not to do it again).
My oncologist told me he only does the HER2 for two patients, me and another, and prefers not. The other patient's HER2 went up quite a while ago (more than nine months he told me) and they can't find anything, and she's living in constant fear.
He uses the other markers routinely, but emphasized that they're not recommended by oncologists in general, for reasons quoted by Debbie earlier.
I will say, just for myself, that starting down the path of tumor markers was the worse mistake I've made since getting cancer. Now I'm in the position of knowing I have high markers and a good prognosis (4% mortality in ten years by Adjuvant). And the fear of the markers has upper hand.
I agree with Debbie, but just don't have her courage to say 'don't think about this and get on with your life.' I'm trying though. But my recommendation is if you're feeling good with no symptoms, let the markers and scans go. This is one woman's opinion and, admittedly, she's a coward!
When I tell my doctor of stories from here regarding markers and scans, he reminds me, but very politely, that we're a self-selecting group
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