Routine marker testing and recurrence... worth it?

[Hopeful]

I was dx as Stage 1, and my surgeon and my onc differ on this issue. The surgeon has always wanted the markers, the onc has always maintained that for me, it is a waste of time. I have already had one test (Oncotype Dx) which provided a result that has cost me sleep, (although my subsequent research and the fact that Her2+'s were excluded from the TailorX trial, leads me to believe the test is not providing the same info to Her2+'s as it does to Her2-'s), the fact is that it still causes me anxiety that I would not have had if not for the test. I feel the same way about TMs. The issue to me is that they are not completely reliable for everyone. If they were, then the decision to use them would be a no-brainer. Since they are not, I do not want to be in a position of having additional anxiety and a battery of tests based on a marker level that may serve no purpose other than to make me miss time from work and increase my radiation exposure. Then, if the tests are all still negative, there remains the anxiety that something IS still there that has not been able to be found. Dealing with the mental challenge of this disease is in some ways more difficult than dealing with the physical challenge. I think we all need to approach this issue from the perspective of what gives us greatest peace of mind. If Stage 1's want this testing, and their doctors agree, then blessings and best of luck to them. Until there are fewer false negatives and false positives with TM's for my disease, I am satisfied to rely on the current NCCN guidelines.

Hopeful

Hopeful and I have had the same uncomfortable experience, although mine was with tumor markers, both CA 27-29 and HER2 Bayer. Very small cancer, Stage 1A, Grade 2, 20% proliferation rate. But then I opened Pandora's box asking for tumor markers to be run and found that both of the above markers were above the cut-off number. It didn't change my treatment options, but it did make me view every ache and pain as a recurrence. I've regretted for more than a year now having those markers run and will always regret it, as I've had a year of unnecessary anxiety. So far, knock wood, I've had no recurrence and my markers have gone down, although slowly. I'm not taking sides in this dispute as we each must do what works best for us, even if in some cases it doesn't follow national guidelines, but I know that if anyone at Stage 1 were to ask me my advice regarding tumor markers, I'd suggest she run the other way.

Carolyn, with respect to your question, I suspect the reason for taking tumor markers in studies that concern early breast cancer is to use that information to come up with guidelines. If these studies should determine that tumor markers hold a clue to future BC activity this information will find itself incorporated into national guidelines, but I don't believe we can infer from the taking of tumor markers in studies that it's a recommendation for the general population. What finally made me relax about my elevated markers was Dr. Pegram's statements about same, which were posted a few months ago in an earlier discussion.

[Mary Anne in TX]

You know, we're as different as our BCs are, aren't we! I keep thinking of the 1 in 15 who survived the first trial of herceptin and remember her saying that she was stronger than the rest. I guess I believe they will keep finding more appropriate meds for us. I just want this ol' body in as good a shape as possible when they do! I still want to see my grandkids graduate from college. Our mental stress, or more importantly the lack thereof, seems to be so very important to our immune system and our general well being. Maybe I do the markers for that reason, but I also think they are a guide for some of us. I do the labs for all the liver, kidney, etc each time too and find them as helpful as the marker. The truth is I'm far more likely to die suddenly of a stroke (a family thing) than of BC, but want to do my part, even in the unvarifiable areas (they are still learning, thank God). But, if I didn't have the support that I do, I'm not sure that I would want to know all that stuff. I'm often tempted to just "move on" and believe what so many friends would have me believe....that I'm done with all that!!! I like that we're so different and do things so unlike each other! Makes for better learning. Thanks to all for being so bold and different! ma

[saleboat]

I don't really have anything to add to this thread, but just add my two cents-- I have asked my Onc, who does do TMs, to not, under any circumstance, let me know what they are...unless there's a reason to worry, I just don't want to know. I've decided that it her job to worry, it is my job to get back to living my life. It cedes a certain amount of control over what is, to my mind, a diagnosis that defies control. If I knew the TM numbers, I would Google myself to distraction and the anxiety would overwhelm me.

Just an alternative approach for those who do TMs.

[caya]

Saleboat and Grace,

I am with the two of you on this one. Being stage 1, I really do not want to get aggravated with TMs etc. unless there is a need. My onc. does blood work and the onc. nurse will tell me - your blood work was very good, or something to that effect. I would be all over the internet too, and I think I will tell my onc. what you told yours, - for me, ignorance is bliss - again, not for everyone, but being stage 1, and of course unless there are symptoms present, I just don't want to drive myself CRAZY.

I like your comment Saleboat that it is the onc.'s job to worry. I told my onc. it is his job to make me get old - and I intend to hold him to it.

all the best
caya