StephN said: OK - here is where I had trouble with the study Marcia posted and the NCCN's guidelines NOT meshing. The study is from 1999 and the referenced guidelines are from 2000.
Debbie now: The study about tumor markers said that markers were useful in detecting mets before symptoms. Which they are - no dispute. But other studies have shown that there is no benefit to doing that, and that's what the guidelines are based on. Mets detected by symptoms respond just as well to treatment as those detected before symptoms, say the studies, and the NCCN. QOL is also equal in the two groups, per the NCCN studies (which I think are updated as of 2007). There is no way to know if this is true on an individual basis. You can't say that because you had your mets detected with TM's, and did well, that it was TM's that made the difference. You can think that, and are perfectly entitled to do so, but you cannot prove it. No more than someone who didn't do well can blame their situation on the TM's or lack of them. These kinds of things only show up in large groups, not in individuals, and when well-done large studies show significant results, that's considered proof. For an example near to our hearts (hah, no pun intended, but it happened anyway), herceptin for adjuvant treatment did not happen until large studies were able to show its benefit. When we allow emotion and anecdote to rule, we risk getting into trouble and doing harm, as happened with the bone marrow transplant fiasco. Have you read the book just out about that? False Hope, by Richard Rettig. I haven't but am eager to do so.
See, I have a problem with rambling. Back to the issue at hand: are there subgroups for whom this follow-up recommendation is not true, as several have insisted? We don't know, but I can't really think of a reason why that would be true. For treatment - yes there are definitely subgroups that respond differently, many of which we probably don't even know about yet. But this basic primary follow-up question seems more likely to have one answer.
Something not much mentioned in this discussion except by a few individuals who experienced it is the cost to QOL in anxiety related to close surveilance, and also to false positives that result in even more testing.
(Wouldn't it be interesting to know how long, on average, it would take a tumor marker-detected met to produce symptoms - probably not that long, which could be why there's no difference - or it could be that response is response, and has not much to do with bulk. That often seems to be the case).
Alaska Angel, now I see why that's your name (smile). It's good talk to you again. Thanks for staying level-headed and kind.
As to translating to laymen's language, that's always hard. But both the abstract's conclusion and the NCCN guidelines are pretty understandable and don't need translation. I'll quote them and see if you don't agree:
The study that begins this thread sums up their results: " In conclusion, tumor markers are useful tools for the early diagnosis of metastases, being the first sign of recurrence in 69.5% of patients with relapse (76.3% in patients with metastases)."
And the NCCN guidelines, one short paragraph (I remember now trying to do this before here, and formatting gets all messed up - sorry):
Interval history and physical exam every 4-6 mo
for 5 y, then every 12 mo
Mammogram every 12 mo (and 6-12 mo post-RT
if breast conserved) (category 2B)
Women on tamoxifen: annual gynecologic
assessment every 12 mo if uterus present
Women on an aromatase inhibitor or who
experience ovarian failure secondary to
treatment should have monitoring of bone health
Assess and encourage adherence to adjuvant
hormonal therapy.
Enough,
Debbie