[saleboat]

Hi everyone,

(Warning, long post...)


I'd really appreciate some advice. I wonder if I don't fit into the description below, which is from another thread on this site:



"I am always concerned for the group of patients that come from the old school, that my doctor knows best."



I never know when to 'push' and when to accept well-reasoned advice. I'm currently treated at Sloan-Kettering, and one of the reasons that I went there (out of network) was that so I could have peace of mind and not double-check everything that was being recommended to me-- which is my nature. But the more I dig into PubMed, the more I recognize that I just don't have the training to evaluate the medical literature.



I am content that I received the best chemo treatment available to me (at the time-- TOPO testing wasn't on my radar screen) but I continue to wonder about my hormonal treatment. AIs seem to show the least advantage vs Tamox in women who are both ER+ and PR+ (I was 95%/90%). But then again, for Her2+ patients, there's some evidence that Tamox isn't as effective as an AI. Maybe this is because Her2+ women are less likely to be both ER+ and PR+? I don't know. It does seem to be that young women who go into chemopause do better overall. Then I think, maybe I should just have my PTEN tested, then I can stop worrying about the hormonal stuff. (THIS STUFF MAKES ME CRAZY!!!)



My Onc at Sloan thinks Tamox is best (unless I want to go into a trial, and I don't) and the two other Oncs I consulted agree with Tamox. But I wonder-- how many pre-meno/Her2+ women do they see? Is there some other 'expert' that I should go to-- like the guru up in the mountain cave-- for a final reading of the situation? I've also showed my Onc the study that was posted on this site about liver enzymes and ability to metabolize Tamox-- I've called Mayo to see if this is now protocol for young women, but haven't been able to find someone responsive. My Onc doesn't seem very interested. Most pre-meno women seem to have at least chemical shut-down of their ovaries (out of trial) and some even take an AI. SO-- do these women's Oncs know something that my Oncs don't?



I really want to get on with living my life, but I don't want to stick my head in the sand on these issues. (The other big one is whether or not to have a brain MRI...) I can't really talk to my husband about these issues, or at least I choose not to, because his father is about to start high-dose chemo and stem-cell transplant for relapsed lymphoma. We're really up to our eyeballs in this cancer crap (as is everyone here...)



SO-- thank you for taking the time to read this— I feel better just having written it.

Jen