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Barbara,
I recently found myself almost precisely where you are now. I was dx 9/03, bilateral mastectomy; 4+ nodes; er+/pr+; Her2 +++; CAF x6 finished 4/04; rads finished 7/04; vaccine trial; NED to date.
I asked my onc about Herceptin after the ASCO meeting. She said no because I was more than 12 months out. My second opinion onc said yes to Herceptin because of my high risk status and suggested I throw in some Taxol for good measure because of the demonstrated synergy between Taxol and Herceptin. Talk about two ends of the spectrum. I informally polled some onc. Herceptin experts and found that one said do nothing, two said do Herceptin alone, and one said do Herceptin and Taxol. So when I added my two opinions to these suggestions, we had a three way tie. Gee, that was helpful. Thus, I had no choice but to figure out all by myself what I would do.
While I initially opted for Taxol + Herceptin in order to get the biggest bang for the buck, I just couldn't get comfortable with that decision. My quality of life right now is great and I didn't want to undergo chemo again in the absence of known disease. I didn't want to deal with low white counts, the loss of my hair after finally getting it back, and neuropathy risks associated with Taxol since I have a history of pretty nasty neuropathy. But was I wimping out and risking mets that I might otherwise thwart if I just sucked it up and have them throw the book at me now with Herceptin and Taxol? I flip flopped back and forth and ultimately opted for the Herceptin only approach. If and when I need Taxol or anything else, I will get it at once. But while I am NED and after recently undergoing some pretty aggressive treatments, I want to maximize quality of life with my husband and three year old daughter and will just stick to Herceptin for now. I am getting treated once every three weeks and have had no problems with Herceptin to date.
I am very comfortable with my decision which suggests that it is the right one for me. Given how little is apparently known for us far out/previously Taxol-free gals, I think that you need to make the decision that feels right to you (if you think you would beat yourself up if you get mets down the road for not taking the Taxol now, perhaps you should just do it). Tough stuff, I know.
Best of luck and good health. Please let us know what you decide.
Cynthia
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