Routine marker testing and recurrence... worth it?

[Carolyns]

Debbie,

You made specific statements that I found to be untrue in my experience. I responded to that and below is one of the comments from your post:

"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?"

No benefit? I am not in a wheel chair. I consider that a BIG benefit. Will I live longer (?) - well upright anyway. Markers are not for everyone but they worked for me.

I think that I could have considered your comment above to mean that my reply / experience was irrelevant as a mets girl. I think anytime you state that others comments are irrelevant you will get some push back...I hope so anyway. I guess I could have done that or even considered it to be unfriendly or insensitive. I didn't because I try not to judge. I can not interpret your intention just state my experience...no judgement on my side.

That is my personal story...stage I to stage IV with TMs as a part of the puzzle.

Carolyn

[StephN]

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.

Here is the study's conclusion:
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).

Did not anyone on the guidelines committee at the NCCN READ that study?? Here is where I get to say DUH! Do these numbers not have any meaning in forming GUIDELINES for taking markers?

My diagnosis was in 2000 - AFTER the study was published. My med onc is highly informed and told me then he would be looking at tumor markers since I had an aggressive form of the disease. I was fine with that, as I already had friends who were then in stage IV and knew I was a high risk Stage II patient. I learned early on to look the beast in the eye (with little or no support, I might add).

Maybe one study was not enough for the NCCN to change a guideline, but it is useful if our doctors are aware of the outcomes of these studies and apply the theories of the STUDIES rather than any "one size fits all" guideline.

Just as we are WAY past the "give everyone with BC the same scorched earth drugs," any thoughtful oncologist is WAY past using the same national guidelines for ALL his patients. Fortunately for me, my onc was THINKING of me as an individual patient in 2000, rather than just another hash mark in a statistic.

The BENEFIT to me is that I am alive to be responding to this thread. As well as one more "hash mark" to the good of early surveillance.

[AlaskaAngel]

The discussion is pretty sensitive. I'm guessing, but I think the real source of confusion is that the guidelines are based on general bc, whereas this particular forum is heavily made up of high-risk bc patients whose cancers usually act very differently than most other general bc cancers.

At any rate... having had discussions with Deb L in the past where we have at times disagreed intensely but without rancor, I would miss her a lot. She has spent time learning about the more complex details about bc and has a lot of knowledge that she shares here in good faith.

AlaskaAngel