HER2 Support Group Forums - View Single Post - Herceptin for HER2+++'s who have never had it

06-12-2005, 08:08 PM

To answer your question, Bevie, on bone scans, normally I try to use the radiologists website but for some reason it isn't working. Bone scans just identify areas of abnormality, either "hot" or "cold" spots, and then if there is something seen you may end up getting other tests to tell what is causing the hot or cold spots. Here's some discussion about them:

http://www.breastcancer.org/testing_xray.html

As for the HER2/no herceptin question, I'm not so sure the group of people affected actually is relatively small unless we are looking at it in terms of the 20-25% of all bc that is considered to be HER2 positive... (by the way, Joe, since many were never tested at all for HER2, does that percentage include the estimated percentage of survivors who were never tested?). However, I agree that with time it won't be growing (especially if we end up dying off...!) And that brings to mind another question -- Does anyone have any estimate of percent of HER2+++'s DO end up with mets in their lifetime? Or even what percentage of all mets are HER2+++'s?

As remarkable as it might sound, I have never heard the word "HER2" from my oncologist since I was diagnosed in 2002. I especially appreciate the advice about utilizing more than one oncologist's opinion whether or not he is considered highly qualified, as I agree with that after 3 years of trying to find ways to deal more effectively with the one I have.

Thanks,

A.A.

06-12-2005, 08:08 PM	#10
AlaskaAngel Guest Posts: n/a	To answer your question, Bevie, on bone scans, normally I try to use the radiologists website but for some reason it isn't working. Bone scans just identify areas of abnormality, either "hot" or "cold" spots, and then if there is something seen you may end up getting other tests to tell what is causing the hot or cold spots. Here's some discussion about them: http://www.breastcancer.org/testing_xray.html As for the HER2/no herceptin question, I'm not so sure the group of people affected actually is relatively small unless we are looking at it in terms of the 20-25% of all bc that is considered to be HER2 positive... (by the way, Joe, since many were never tested at all for HER2, does that percentage include the estimated percentage of survivors who were never tested?). However, I agree that with time it won't be growing (especially if we end up dying off...!) And that brings to mind another question -- Does anyone have any estimate of percent of HER2+++'s DO end up with mets in their lifetime? Or even what percentage of all mets are HER2+++'s? As remarkable as it might sound, I have never heard the word "HER2" from my oncologist since I was diagnosed in 2002. I especially appreciate the advice about utilizing more than one oncologist's opinion whether or not he is considered highly qualified, as I agree with that after 3 years of trying to find ways to deal more effectively with the one I have. Thanks, A.A.