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

10-20-2007, 09:42 AM

One more for good measure.

I read on this site about tumor markers in July 2006, including HER2 Bayer (Gina), not too long after surgery. I asked for the markers to be run, against advice of my oncologist, but he ran them nonetheless. His reasoning was the same as that of many oncologists: too many false positives and false negatives, and mainly, he said, because of the anxiety it provokes in patients.

My 27-29 first time in August 2006 was 41.5; a week later it was 45, and I was scared silly. My HER2 Bayer was 16. My other markers were normal. We had decided just to do herceptin for a year but I decided, on my own, to do taxol and carboplatin. I had a severe reaction to chemo, and still have serious issues with memory, neuropathy, etc. I quit after two sessions but continued with herceptin until August 7 of this year. During the year, I spent most of my days thinking of a recurrence, worrying constantly, all because of my high markers. I am a logical person most times, but not about BC. I finally got some peace in April, after reading Dr. Pegram's comments concerning markers, and began to write and live again. During that year, I had a urinary tract infection, which I thought was cancer; dizzyness, thought it was brain mets; shortness of breath, thought it was lug mets. So in that year, I had a PET scan, a CT lung scan, an MRI of the brain, with contrast (with unfortunate burns on my arm), an echo stress test, and, of course, many MUGA scans.

I still regret having the markers run. I was rather comfortable with my prognosis after surgery and probably would have had a good year, with some anxiety but not constant worry. My oncologist, who works only with breast cancer patients in a very large New York cancer center, told me that only two of his patients have had the HER2 test run. The other patient has had rising numbers for more than a year, and to quote him--"they've scanned everything and can't find anything." My markers did go down, in particular my HER2 marker (to 8), and the decrease (this August) coincided with severe breathing problems, so I wonder now if herceptin has damaged my heart, as since herceptin I developed a pericardial effusion and some issues with the right ventricle. I don't know the number from my last 27-29, because I didn't ask, and I don't want to know, but I suspect it's still in the low 30's, which is higher than that of many women on this site who are Stage IV. Is it possible that I had and have cancer cells lurking--possibly--but since my treatment was the same for the year (herceptin), having the markers run made no difference to my physical survival. I have decided, after much angst, not to have the markers run again. If I have persistent symptoms, I will ask for scans but I will try to live without the constant anxiety that I experienced in the past year.

Each of us must make her own decision on markers, hopefully with self-knowledge. If you're a worrier, I suggest you forego the markers and scans if you're not having symptoms. I agree with Debbie on her main point. Individual stories are ancedotal, not science. The main reason I visit this board is to hear the stories, particularly the good ones, as they give me hope that I'll be around for a long while and as a bonus I've met some very nice people here. We can agree to disagree, can't we?

10-20-2007, 09:42 AM	#50
Grace Guest Posts: n/a	One more for good measure. I read on this site about tumor markers in July 2006, including HER2 Bayer (Gina), not too long after surgery. I asked for the markers to be run, against advice of my oncologist, but he ran them nonetheless. His reasoning was the same as that of many oncologists: too many false positives and false negatives, and mainly, he said, because of the anxiety it provokes in patients. My 27-29 first time in August 2006 was 41.5; a week later it was 45, and I was scared silly. My HER2 Bayer was 16. My other markers were normal. We had decided just to do herceptin for a year but I decided, on my own, to do taxol and carboplatin. I had a severe reaction to chemo, and still have serious issues with memory, neuropathy, etc. I quit after two sessions but continued with herceptin until August 7 of this year. During the year, I spent most of my days thinking of a recurrence, worrying constantly, all because of my high markers. I am a logical person most times, but not about BC. I finally got some peace in April, after reading Dr. Pegram's comments concerning markers, and began to write and live again. During that year, I had a urinary tract infection, which I thought was cancer; dizzyness, thought it was brain mets; shortness of breath, thought it was lug mets. So in that year, I had a PET scan, a CT lung scan, an MRI of the brain, with contrast (with unfortunate burns on my arm), an echo stress test, and, of course, many MUGA scans. I still regret having the markers run. I was rather comfortable with my prognosis after surgery and probably would have had a good year, with some anxiety but not constant worry. My oncologist, who works only with breast cancer patients in a very large New York cancer center, told me that only two of his patients have had the HER2 test run. The other patient has had rising numbers for more than a year, and to quote him--"they've scanned everything and can't find anything." My markers did go down, in particular my HER2 marker (to 8), and the decrease (this August) coincided with severe breathing problems, so I wonder now if herceptin has damaged my heart, as since herceptin I developed a pericardial effusion and some issues with the right ventricle. I don't know the number from my last 27-29, because I didn't ask, and I don't want to know, but I suspect it's still in the low 30's, which is higher than that of many women on this site who are Stage IV. Is it possible that I had and have cancer cells lurking--possibly--but since my treatment was the same for the year (herceptin), having the markers run made no difference to my physical survival. I have decided, after much angst, not to have the markers run again. If I have persistent symptoms, I will ask for scans but I will try to live without the constant anxiety that I experienced in the past year. Each of us must make her own decision on markers, hopefully with self-knowledge. If you're a worrier, I suggest you forego the markers and scans if you're not having symptoms. I agree with Debbie on her main point. Individual stories are ancedotal, not science. The main reason I visit this board is to hear the stories, particularly the good ones, as they give me hope that I'll be around for a long while and as a bonus I've met some very nice people here. We can agree to disagree, can't we?