HER2 Support Group Forums - View Single Post

dlaxague · 04-18-2007, 08:01 AM

Are we talking about regular scans after primary treatment or when stage IV? There's a difference between the two, regarding surveilance. I think the discussion began about follow up after primary treatment.

Studies have shown that there is no benefit to survival nor to quality of life in finding initial mets before symptoms. The NCCN guidelines have references for this, and no scans nor tumor markers are included in their follow up recommendations after primary treatment. There is no such thing as finding mets "early". In fact, finding them "early", if that means before symptoms, simply means that one lives longer with the knowledge of the existence of mets - not that one lives longer overall. And as others have noted, the emotional cost of false positive results is high.

This is not to say that nothing can be done, nor that symptoms should be ignored. The two-week rule seems reasonable to me. Unexplained symptoms that last for two weeks should be worked up, ruling out mets FIRST, not after trying all the usual remedies. An example would be back pain - you would not want your provider to treat or evaluate you for muscle strain until after mets had been ruled out. Some providers will want to do it the other way around - treat the garden variety possibilities first and investigate further only if that doesn't work - that's where we need to be our own advocates and push to rule out mets as the first step. For this plan (scans for symptoms only) to work, the index of suspicion has to be high for mets, for any symptom. You don't want mets in any location to progress to the point that irrepairable damage has been done.

There is one exception to this rule which is brain mets - treatments and their successes vary depending upon size and extent (and options are much better when small and/or few), but brain as a site of first recurrence is fairly rare. Once mets occur elsewhere, then regular brain surveilance is a good idea, and it could be argued that it's a reasonable option after high risk primaries as well, although I don't think there is much hard evidence on this, yet.

I know that it's hard to accept that scans or markers, in the absence of symptoms, don't have much to offer us. If they could come with a warranty - disease-free-now-and-forever - of course we'd want them. But they can't even guarantee us tomorrow disease free. So since I have no choice but to accept the uncertainty, I find it liberating to know that at least I will not have to endure, at some arbitrary interval, the anxiety that accompanies most of us as we anticipate the tests and then wait for the results.

It could be argued that the same principles might apply to stage IV NED, but I doubt there's evidence on that - probably because treatment of stage IV is improving so quickly that it's hard for evidence to keep up.

Debbie L.

04-18-2007, 08:01 AM	#13
dlaxague Senior Member Join Date: May 2006 Posts: 221	Are we talking about regular scans after primary treatment or when stage IV? There's a difference between the two, regarding surveilance. I think the discussion began about follow up after primary treatment. Studies have shown that there is no benefit to survival nor to quality of life in finding initial mets before symptoms. The NCCN guidelines have references for this, and no scans nor tumor markers are included in their follow up recommendations after primary treatment. There is no such thing as finding mets "early". In fact, finding them "early", if that means before symptoms, simply means that one lives longer with the knowledge of the existence of mets - not that one lives longer overall. And as others have noted, the emotional cost of false positive results is high. This is not to say that nothing can be done, nor that symptoms should be ignored. The two-week rule seems reasonable to me. Unexplained symptoms that last for two weeks should be worked up, ruling out mets FIRST, not after trying all the usual remedies. An example would be back pain - you would not want your provider to treat or evaluate you for muscle strain until after mets had been ruled out. Some providers will want to do it the other way around - treat the garden variety possibilities first and investigate further only if that doesn't work - that's where we need to be our own advocates and push to rule out mets as the first step. For this plan (scans for symptoms only) to work, the index of suspicion has to be high for mets, for any symptom. You don't want mets in any location to progress to the point that irrepairable damage has been done. There is one exception to this rule which is brain mets - treatments and their successes vary depending upon size and extent (and options are much better when small and/or few), but brain as a site of first recurrence is fairly rare. Once mets occur elsewhere, then regular brain surveilance is a good idea, and it could be argued that it's a reasonable option after high risk primaries as well, although I don't think there is much hard evidence on this, yet. I know that it's hard to accept that scans or markers, in the absence of symptoms, don't have much to offer us. If they could come with a warranty - disease-free-now-and-forever - of course we'd want them. But they can't even guarantee us tomorrow disease free. So since I have no choice but to accept the uncertainty, I find it liberating to know that at least I will not have to endure, at some arbitrary interval, the anxiety that accompanies most of us as we anticipate the tests and then wait for the results. It could be argued that the same principles might apply to stage IV NED, but I doubt there's evidence on that - probably because treatment of stage IV is improving so quickly that it's hard for evidence to keep up. Debbie L.