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Debbie,
I am speaking from my own personal experience. I did not have mets and I was followed with TMs. Like Brenda, I was being followed after a Stage I diagnosis when my markers began to rise. (This was after my second diagnosis with a new primary BC in the other breast.) Perhaps the fact that the doctor's overlooked the rise in markers wouldn't make me live longer. However once realized and combined with more testing we learned that my C-6 vertebrae was ready to melt away and could cause paralysis from bc mets. So in my case it mattered a great deal as a "piece in the puzzle" to get me help and treatment. Getting treatment in time kept me working full time, riding a bike and living life as an active mother to a 9 year old. A big BENEFIT to me and very cost effective.
As far as how the doctor's know whether or not someone with mets detected early will live longer...I don't know. I am sure that there is some scientific calculation based on others but are those others like me? I am not "typical" in the bc population.
I flash back to my diagnosis at 32 (19 years ago) and conventional wisdom prevented me from getting a mammogram for over 1 year. I was too young according to guidelines back then. They were the doctors and I wasn't. Well I finally found a doctor who would prescribe a mammogram and that is how I was diagnosed. The study I participated in required Chemo and followed by tumor markers to be drawn every 6 months for 5 years...I still wonder why TMs? Anyway, that is where I took my lead. If TMs were required in the study than I wanted to continue with them since they had always held steady for me.
I can read the guidelines all day and all night and so far I have been outside of them. I don't want to be right I just want to stay alive even if it means going against the guidelines. My situation has always been slightly in front of the guidelines but I don't have time to wait for the guidelines to catch up. I can only share my experience. It is what it is.
As a breast cancer survivor, I would not go to a doctor who told me that discovering mets early has no benefit to survival or quality of life. I believe that idea could have contributed to the delay in a mets diagnosis for me. As someone diagnosed with cancer in my early 30s I have learned that I must stay alert. It is what works for me but I know it is not for everyone.
Carolyn
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