Thursday, October 10, 2013

So Many Questions and a Mammogram

I was thankful that Wendy from Huntsman Cancer Institute has been so patient. She was more then wiling to schedule this appointment with her and an Oncologist at the Huntman Cancer Institute. We spoke for a while, they then took action at my request and made appointments for me to meet with a Gynecologist and the two surgeons that would possibly do my Mastectomy and reconstruction. And as an added bonus...it was a year since my last mammogram so before I left I got my tata's squished!

The appointment was to address my initial plans for screening and/or surgery. They were both so good at answering all my questions regarding my risks of cancer and surgeries. My mom was there by my side. I opted to take her to this appointment only because she tends to keep me calm and not anxious like Kirk. Wendy did give me my official test results with the Clinical Note/Letter. In fact, let me share a bit....

Official Assessment Letter: Your family history is significant for hereditary breast and ovarian cancer syndrome, and there is a known genetic alteration in the BRCA 1 gene in your family. The specific mutation identified in your family is called Q1313X. Genetic alterations (mutations) in this gene are known to cause a highly increased risk for breast and ovarian cancer. When your sample was tested, the Q1313X mutation was identified in the BRCA1 gene. Women with a BRCA1 alteration have up to an 80% lifetime risk for breast cancer and up to a 60% risk for ovarian cancer.

The BEST information I receive today from our trip to Huntsman was learning that there is a website called FORCE www.facingourrisk.org. This website has forums for questions from others like me, links to a local support group, doctors, articles and so much more. It's all people like me that have a genetic mutation that makes them HIGH RISK for developing cancer. In fact, here's a quick fact sheet about FORCE.


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HELLO....I appreciate you reading about me and my experience with BRCA1 and "everyday life". Thank you for taking the time to comment in the positive (but if you want to be negative I invite you to go read someone else's blog).