Thursday, October 17, 2013

What Li-Fraumeni Means for Me- The Genetic Counseling Session

The ritual of the Genetic counseling session seemed pretty straight-forward. We sat in the same little room we had sat in 12 years prior when I was diagnosed with Turner's Syndrome (so I don't confuse anyone, this condition isn't related. I'll probably dedicate a post to it later just to clarify what it is) and were told by the same doctors what this new genetic mutation means for me. Here's roughly what they said

The Bullet-Point List of What Li-Fraumeni Means for Me:
  • Elevated risk for developing soft-tissue cancers at an early age including...
    • skin cancer in general (not sure if this counts as a soft-tissue cancer, but seeing my dad's history I was basically told to go home and bathe in sunscreen.... meh)
    • osteosarcoma (a bone cancer that usually occurs in children. Checking with the docs on that one)
    • brain cancer (before anyone freaks out, I'm still checking numbers and statistics with the docs on this one as well)
    • and BREAST CANCER (starting to make a little more sense now?)
  • Annual MRI's starting when I turn 20. Other forms of surveillance aren't really an option because of the radiation.
  • Regular appointments with various specialists, and trust me there are a lot of them. After 19 years of health issues, it's a pretty safe bet that if you mention a specialist I'm probably either seeing one now or have seen one at some point.
and with this, I'll start to explain the process of making one of the biggest decisions of my life.

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