[dlaxague]

There are actually two discussions going on here.

1. After primary diagnosis and treatment, what surveilance for recurrence is needed, and why?

The answer to that is that NCCN and other guidelines do not recommend any kind of scans or tumor marker monitoring after primary diagnosis. The reason for this is that studies have shown that women who have their recurrence detected this way (as opposed to waiting for symptoms to occur) do not have a better outcome. The do not live longer nor do they have a better quality of life. In addition there is the problem of false positive results which raises everyone's anxiety for no reason. When recurrence happens, the cancer either does or does not respond to any given treatment, regardless of whether it's detected by scans, markers, or symptoms. There is no such thing as finding a distant recurrence "early" (except brain mets which are rarely the first site of recurrence). The HER2 serum test is a marker, thus not recommended, has no benefit to women after primary treatment, and is a waste of health care dollars when used to monitor women after primary diagnosis.

For those with advanced (metastatic) disease, it's a whole different story. Markers, including the HER2 serum test, may be useful to monitor response to treatment and perhaps to track status during periods of NED.

2. Second question - is the HER2 serum test itself a good (reliable) test to use when doing tumor markers? 'Sounds to me like it's one more piece of information to add to the mix but perhaps not a stand-alone one. Although some women, over time, may find that it's an accurate indicator for them, just as the other tumor markers are for some women. (some women have widespread disease and no elevation of the currently-used tumor markers - each cancer is different). Plus it may have some use in making decisions about the use of Herceptin, in advanced disease.

This information about not doing scans and markers after primary disease is so hard for some to accept. "But it makes me feel better to have a negative marker or scan", women will say. I say that a negative scan or marker today does not carry a warranty. You may have a negative scan today and a recurrence begins tomorrow. After breast cancer, there is some risk of recurrence, varying for each of us, but always there. That is a fact. Our best option is to accept that fact and learn to live with it. It's perfectly possible to do that, and it may enrich our lives to do so.

I don't say this to alarm anyone but to emphasize how useless these surveilances are. And to be blunt, imho - it is selfish and wasteful to demand an expensive test that is of no value, just because you think it gives you peace of mind. We (the global "we") don't have enough money to keep up with the incredible cost of advancing medical technology. We cannot provide the most basic of health care to many humans on this planet. And if we continue to mis-use what is available to us, we drain precious health care dollars, for no purpose. Dollars that could be used to save lives.

I know that this post is blunt and critical, and I know that the people on this list are wonderfully polite and supportive. I do admire this list for its civility. But I feel strongly about this issue of responsible stewardship of our health care resources. And let me emphasize again that I am talking only about surveilance after diagnosis and treatment of PRIMARY breast cancer.

Debbie Laxague