Li-Fraumeni Syndrome

When I first found out the results of my BRCA 1/2 tests, the genetic counselor also told me about another genetic test for Li-Fraumeni syndrome (LFS).  I think I may have mentioned this back in January, but didn’t really expand upon it.  My genetic counselor was going to work with my insurance company to see if they’d even cover the test.  Well, about 2 weeks ago I got the call that BCBS has approved this.

Basically, LFS is a hereditary cancer predisposition syndrome. This means that a person who has LFS will have an increased risk of developing other types of cancer. The most common types of cancer found in families with LFS include bone cancer, soft tissue sarcoma, leukemia, breast cancer, brain cancer, and adrenal cortical tumors. An increased risk for melanoma, a type of kidney cancer, and cancers of the stomach, colon, pancreas, esophagus, lung, and gonadal germ cells have also been reported. Almost every part of the body may be at risk for cancer in someone who has LFS.  It sounds scary to have a test like this done.

So, it took me a while to decide whether or not I wanted to move forward with this test.  It is kind of like, “how much do I want to know/not know.”  Well, I’ve decided I want to know.  So, in the next week or so, I’ll  be moving forwarding with this test and should hopefully have the results in another 4 – 5 weeks.  I’ll keep you all posted.

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2 Responses to Li-Fraumeni Syndrome

  1. Pingback: Ready for Radiation? | Brave & Bubbly

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