[dlaxague]

Hi all,

There is a big difference between the value of tumor markers for those who have already had a distant recurrence, and those who are NED after primary disease. The article that started this thread was about tumor markers after primary disease, and so replies from those with mets are irrelevant. Interesting, but irrelevant. And did you notice that the article did not address benefit from finding mets sooner with tumor markers - it simply said that it was possible to do so. Duh. But why would we want to do that, if there's no benefit in it?

If one has had that distant recurrence, and tumor markers were elevated (not all cancers elevate tumor markers), then tracking the markers is one tool for monitoring response to treatment. They are usually not stand-alone and are supplemented with scans, but tumor marker results can help signal when it's time to take a look with scans. Most docs use tumor markers as one of the tools to monitor advanced breast cancer (for those whose cancer does elevate the markers), especially when in treatment. For those that achieve NED after mets, it's a little more gray and I don't know of much research there. It could be argued that at that point, it's back to the after-primary-disease algorhythm where there's no benefit to finding progression before symptoms appear. The exception here would be monitoring for brain mets because that is one area where it helps a lot to find them when they are smallest. But that's typically done with scans rather than relying on TM's, right?

So on to that area that's so hard for us to get our minds around -tumor marker and/or scans after primary disease. The recommendations for follow-up are for physical exam/symptom report only. (in addition to mammograms if breasts remain, and uterine exams if uterus remains and on Tamoxifen). The reason that this is the recommendation is that good studies have shown that even if mets is detected before symptoms appear (using scans or tumor markers), there is no benefit to surival, nor to QOL. Women do not live longer, or better, if their cancer is detected before symptoms. In addition, there is really very little reassurance in a negative tumor marker - first of all you do not know if it's accurate for you (many recurrences happen with no elevation in markers), and secondly it only tells you about today and offers no guarantee for next week.

Okay - again - talking now to those who are NED after primary diagnosis - this has nothing to do with those being monitored after metastic recurrence. Why would you want to subject yourself to the anxiety and stirring-up of cancer fears that come with a test that offers NO benefit to you? Why would you want to squander health care dollars for a test that offers no benefit? There is no such thing as "catching mets early". Mets are NOT early, they are advanced disease. If mets happens, they either do or do not respond to any given treatment and response seems to have little to do with amount of disease (except brain mets). Look at the many women on this list who had quite extensive mets, even to vital organs - yet they achieved NED-ness with chemo/herceptin. Others with small areas of mets struggle to get a response, trying many different chemos but experiencing steady progression. When talking recurrence, it's less about size and more about response. (that may be true for primary disease too - but we haven't figured out, yet, how to know that).

So - again - for those who are NED after primary treatment, there is no benefit to "watching really closely", no matter how high your risk of recurrence is. NO BENEFIT. Report any symptom that persists for more than two weeks, and be sure that cancer recurrence is ruled out before garden-variety causes are explored. That's all you can do. Of course, we wish that there were a way to make us safer, by using intensive surveilance. But intensive surveilance does not prevent recurrence and it does not improve survival nor quality of life. In many cases, because of the anxiety testing causes, it detracts from quality of life. I know that it's a hard thing to accept and understand, and that we wish there were more we could do. We can hope that someday there WILL be more, but right now this is the reality. Why not accept it and go seize those moments?

Debbie Laxague