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I'm 2 3/4 years out here. Based on the lack of response to my last post about it I have to agree with you. My onc hasn't contacted me about anything in regard to further treatment.
Whether or not other HER2's who are this far out and NED feel confident enough not to do further treatment, I personally feel very strongly that most of us should have access to it if we want it. I was told when I chose to do chemo that the chemotherapy that I had (CAF x 6) does not prolong survival, it only pushes back the onset and number of recurrences.
I believe this because there is some information demonstrating that micromets can be found in most Stage I's up to 4 years after completing treatment.
I also believe this because recently it has been estimated that 17% of breast cancer recurrences are diagnosed within 5 years. That leaves around 83% to be diagnosed after 5 years.
We may be a dwindling group but in my mind that is no reason to deny us treatment if we want it. I just wish enough of us were smart enough to be interested in a clinical trial to get one so that the treatment we might get would provide additional information instead of being a hit or miss effort for all of us.
I also don't think we are a SMALL group at this point, although we WILL be if they just leave us to get Herceptin when it is really too late to do much good.
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