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Hi Linda. I am Stage I HER2+++, ER+, PR+ and am NED but I will add what I have to say. At diagnosis I was not assertive enough with my onc and was never even told I was HER2 positive, much less given any idea of my level of risk either, sad to say.
If you can, either use the online predictor Adjuvant! or get a medical provider to help you use it. I was told that since Adjuvant! does not include consideration of HER2 positivity in its calculation for risk, that a guess as to the increased risk for us is somewhere around 5% greater than the results you get from using Adjuvant! prediction. (However, the person that told me that might have given me the increased risk "guess" for a Stage I.)
IMHO, HER2's really do benefit from more frequent markers and more frequent imaging, based to some degree depending on stage at diagnosis. Some here use the Bayer test in addition to markers like CA15-3 or CA 27.29, and some have found the CA-125 to be helpful as well even though it is not specifically a marker for bc.
AlaskaAngel
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