HER2 Support Group Forums - View Single Post - Routine marker testing and recurrence... worth it?

10-23-2007, 02:33 PM

Dear Gina,

I don't blame you, or anyone else, for my decisions. I take responsibility for my own actions. You didn't prod me to do anything, and I honestly don't see how you got that out of "Gina, Go fly a kite." My oncologist advised against running tumor markers. He's a well respected and caring oncologist who has worked solely, and for many years, with breast cancer patients. In addition, I chose him as my doctor; he wasn't forced on me by an HMO. I should have heeded his advice. I didn't, and I regret it. Nothing whatsoever to do with you. You wrote about the HER2 serum test on this site, and it was from one of your posts that I found out about it. But I certainly don't suggest that you pushed me into doing the test. Not at all.

My flippant reaction to your post on this particular thread was a cumulative response to what I viewed as an excessive, and uncalled for, dumping on Debbie because she has another point of view. I should have stayed out of it, as Debbie is intelligent, knowledgeable, articulate, and capable of responding for herself. So my apologies to both of you for getting into the mix.

With respect to the statement you made in your recent post:

Gina's post: Folks, Her-2 mediated disease is very aggressive and its etiology is poorly understood. I think Grace's case, contrary to her intention, provides an excellent example of how the tumor markers may not only have saved her life, but increased its quality. We forget that she could have just as easily died, as thousands have already, from the "not knowing". Yet, Grace has lived, thank goodness, in part, from being aware at least of her numbers and the possible dangerous situation that they could have put her in.

Gina, the above statement is false. I was scheduled for a year of herceptin before the HER2 serum test and I completed my year as scheduled, this August. I most certainly didn't have a better quality of life. I was anxious all the time, stopped writing for eight months, and spent most of my time reading about BC (how depressing). I also had five unnecessary scans, which only increased my anxiety. If anything, my experience proves Debbie's point (as well as that of my oncologist and the wisdom of the national guidelines on not running tumor markers for early BC patients). It doesn't prove yours.

Again, and for the last time ever, my suggestion, based solely on my experience, to anyone who has Stage 1 BC who may be thinking of requesting tumor markers is this. Don't assume that your markers will be in normal range, and don't expect that if they are in normal range that they'll be low normal. That is, be prepared for numbers you may not like and may not expect. You should ask yourself if you happen to have elevated markers if this knowledge will change your course of treatment. If the answer is no, perhaps you should review your decision to have the markers run.

I've read (and written) too many posts concerning elevated markers to believe that all women with BC can take a rise in markers casually. If knowing that there is a likelihood that you are having a recurrence gives you a sense of security, by all means ask for markers. But if you're at all like me and it will cause you much unhappiness, don't. If, as Margery writes above, markers may indicate a possible recurrence five or six months before symptoms, you should also consider that markers rise in many cases before the recurrence can be viewed on a scan.

So now what do you do? You have elevated markers. You request a full body PET scan, and all is clear. Do your doctors change your treatment based on elevated markers if they are not sure if the elevation represents a recurring cancer or it's the result of an infection, or chemo has pushed your markers up, or you have one of the many other benign conditions that can elevate your markers. It seems to me, you do what I did, you fret and wait. Fourteen months later and my markers are normal, and I still worry although not as much. Obviously, markers, for me, was not the right decision.

But again, I am Stage 1A, Grade 2, great margins, no family history of BC, closer to 70 than 60, and as I see it now, I had no reason to open Pandora's box.

Gina, sorry for flipping you off. I don't blame you for anything, and thank you for the kind words at the end of your post. We are certainly a bunch of strong-minded women, aren't we?

10-23-2007, 02:33 PM	#63
Grace Guest Posts: n/a	Dear Gina, I don't blame you, or anyone else, for my decisions. I take responsibility for my own actions. You didn't prod me to do anything, and I honestly don't see how you got that out of "Gina, Go fly a kite." My oncologist advised against running tumor markers. He's a well respected and caring oncologist who has worked solely, and for many years, with breast cancer patients. In addition, I chose him as my doctor; he wasn't forced on me by an HMO. I should have heeded his advice. I didn't, and I regret it. Nothing whatsoever to do with you. You wrote about the HER2 serum test on this site, and it was from one of your posts that I found out about it. But I certainly don't suggest that you pushed me into doing the test. Not at all. My flippant reaction to your post on this particular thread was a cumulative response to what I viewed as an excessive, and uncalled for, dumping on Debbie because she has another point of view. I should have stayed out of it, as Debbie is intelligent, knowledgeable, articulate, and capable of responding for herself. So my apologies to both of you for getting into the mix. With respect to the statement you made in your recent post: Gina's post: Folks, Her-2 mediated disease is very aggressive and its etiology is poorly understood. I think Grace's case, contrary to her intention, provides an excellent example of how the tumor markers may not only have saved her life, but increased its quality. We forget that she could have just as easily died, as thousands have already, from the "not knowing". Yet, Grace has lived, thank goodness, in part, from being aware at least of her numbers and the possible dangerous situation that they could have put her in. Gina, the above statement is false. I was scheduled for a year of herceptin before the HER2 serum test and I completed my year as scheduled, this August. I most certainly didn't have a better quality of life. I was anxious all the time, stopped writing for eight months, and spent most of my time reading about BC (how depressing). I also had five unnecessary scans, which only increased my anxiety. If anything, my experience proves Debbie's point (as well as that of my oncologist and the wisdom of the national guidelines on not running tumor markers for early BC patients). It doesn't prove yours. Again, and for the last time ever, my suggestion, based solely on my experience, to anyone who has Stage 1 BC who may be thinking of requesting tumor markers is this. Don't assume that your markers will be in normal range, and don't expect that if they are in normal range that they'll be low normal. That is, be prepared for numbers you may not like and may not expect. You should ask yourself if you happen to have elevated markers if this knowledge will change your course of treatment. If the answer is no, perhaps you should review your decision to have the markers run. I've read (and written) too many posts concerning elevated markers to believe that all women with BC can take a rise in markers casually. If knowing that there is a likelihood that you are having a recurrence gives you a sense of security, by all means ask for markers. But if you're at all like me and it will cause you much unhappiness, don't. If, as Margery writes above, markers may indicate a possible recurrence five or six months before symptoms, you should also consider that markers rise in many cases before the recurrence can be viewed on a scan. So now what do you do? You have elevated markers. You request a full body PET scan, and all is clear. Do your doctors change your treatment based on elevated markers if they are not sure if the elevation represents a recurring cancer or it's the result of an infection, or chemo has pushed your markers up, or you have one of the many other benign conditions that can elevate your markers. It seems to me, you do what I did, you fret and wait. Fourteen months later and my markers are normal, and I still worry although not as much. Obviously, markers, for me, was not the right decision. But again, I am Stage 1A, Grade 2, great margins, no family history of BC, closer to 70 than 60, and as I see it now, I had no reason to open Pandora's box. Gina, sorry for flipping you off. I don't blame you for anything, and thank you for the kind words at the end of your post. We are certainly a bunch of strong-minded women, aren't we?