Well, I had a long 75 minute session with Erica Ramos the genetic counselor that I was referred to by the Breast Center. It was very productive! I went extremely well prepared... she said no one ever comes this prepared. After much discussion about several members of the family she came to the determination that it would not be necessary for me to have the BRCA gene testing, she said she could almost be certain that I would test negative. She said our particular family patterns do not line up with what would normally be typical of BRCA gene positive persons. The fact that Lara tested negative just made her that much more convinced.
She encouraged me to have the tumor checked out by the study that the Oncologist recommended, the TailorRX study, that will check something like 28 genes and determine my pre disposition to cancer in other parts of my body, whether I would need Chemo and what type. If I have a defective gene that would be a better clue for the rest of my siblings if they ever need to know that information.
Her advise for my siblings based on our family history would be to insist on having an MRI as well as a Mammo, possibly alternating one each 6 months, and future females in the family as they become adults to start having a Mammo at age 30, instead of the typical age 40. She also gave me a link to a journal for Clinicians about the importance of having MRI's for persons with our family history. This is something you can print out and give to your Dr. as support for your request to have the MRI. copy and paste the following:http://caonline.amcancersoc.org/cgi/content/full/57/2/75
She also told me about another interesting study that proposes the value of taking Tamoxifen for Breast cancer prevention in women who have never had breast cancer. the link for that one is: http://www.nsabp.pitt.edu/STAR/Index.asp
I thought I had taped the whole interview and found at the end that my recorder wasn't working, I think the batteries were dead. UGHHH!!! It was so good and I wanted to share it with all of you. I think I've given you the highlights.
Tomorrow, the Radiation Oncologist... I'll make sure I have fresh batteries!
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