Believe me, Stephanie, we are all glad to hear from you...! Lolly, Joe and Becky covered it darn well. I admire your gutsy approach to your situation at a time when not a lot was widely known about HER2 -- and only wish I would have been that smart... I not only did not get the benefit of Herceptin, or even dose-dense, but I did not get any taxane as part of my treatment. Yet to encourage you, I continue NED at almost 5 years out. The primary reason you are one of the isolated few who are so far out from treatment may not be, as you might fear, because so many have recurred or died, but simply because testing for HER2 was so sporadic and not very reliable, and certainly not standard until 2005. They are probably "out there"; they just don't know they were among the 30% HER2 positive.
Do I have anything to add to what the others said?
For one, since there is a question as to whether chemotherapy ends up just protecting those parts of us that are outside the blood brain barrier, and we seem to be somewhat vulnerable to ending up with brain mets, consider having periodic MRI of the brain so you can catch it early rather than late. One very fine thing about this board is that there are some people here who clearly have benefitted from doing that.
For another... although I have diffiiculty comprehending some of the technical language you will find in posts here, I would recommend you try too to understand RB's, Becky's and Lani's posts and comments. (I personally lean toward organic/vegetarian, as well.)
Of the 3 onc opinions I received in 2005 regarding adding Herceptin now, 1 was opposed, 1 was willing to authorize it, and 1 was neither supportive nor opposed. I have not yet had Herceptin.
RobinP is someone who was also in our category, and her past posts about the FinHer trial (shorter use of Herceptin) are worth reading also. She did choose to do "late" Herceptin.
My personal interest at this point is in the development of better analysis of the tumor for indicators for recurrence.
Thanks again for sharing your story.
AlaskaAngel
HER2+++ (not yet FISH'd or CISH'd)
ER+
PR+
T1c
dx at age 51
Lumpectomy, rads, tamoxifen for 1 3/4 years, Arimidex
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