[dlaxague]

Hi Maria, you didn't get many responses so I'll add my two cents.

The benefit that Tamoxifen offers you depends upon your risk to begin with. It probably also depends (as you intuit) upon the degree of estrogen sensitivity of your cancer cells, although few studies have looked at this directly. I was encouraged (browbeaten?) to take Tamoxifen or an AI, with a 5%/0% report on ERPR. I was stage III, and my onc who usually did not push his opinions but only offered me the information and let me make my own decisions, said "you need all the edge you can get", and said that current standard was to treat any degree of hormone sensitivity (which was true). Jeeze, okay, after six months I gave in and took an AI for two years until I had my pathology re-done elsewhere and it came back totally zero.

I don't know where your pathology was done. If it was not at a comprehensive cancer center, I suggest sending your block to Baylor and re-testing, so that you're sure that you're basing your decision on accurate numbers. It's quite simple to do - you can go get your blocks if you don't already have them and send them yourself, or your onc or surgeon can arrange it for you. You could also get a second opinion on treatment recommendations, if you think that would help you decide. It's never a bad idea to get a second opinion.

I disagree with Becky that AI's have fewer side effects than Tamoxifen. It's true that there are rare life-threatening side effects with Tamoxifen but they are just that - really rare especially in people who have no uterus and/or no history of clotting issues. The reason that we know about those side effects is that we've watched Tamoxifen users for a very long time. We have not had that time (yet) to watch AI users and I worry in particular about possible cognitive effects from the complete estrogen deprivation of AI's. Other things like cataracts and retinal hemorrhages may also be an issue with AI's. But you'd have to suppress or remove your ovaries for an AI to be an option for you.

BTW, the vaginal dryness issue does not seem to be a problem with Tamoxifen like it is with AI's. Hot flashes are an issue with both. And Tamoxifen will not necessarily put you into menopause. Did you have chemo? That will cause menopause - either permanent or temporary.

So my two cents of input would be to advise you to consider re-doing pathology if it was done at a smallish facility, and then to consider the numbers and go with your gut or your heart or whatever that small voice is that knows what is right for YOU. You are the only person who can determine that, and I believe absolutely that whatever you decide will be the best decision for you.

Good luck, keep us posted as you decide.
Debbie Laxague