Li-Fraumeni Syndrome

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pclaradactyl
pclaradactyl Member Posts: 5
edited May 2019 in Just Diagnosed

I'm 26. A couple weeks ago I was diagnosed with Stage II, Grade 3 IDC (triple negative). I was for both of the BRCA genes, but did come back positive for TP53 mutation which is linked to Li-Fraumeni Syndrome. For those unfamiliar, it's a rare genetic disorder that greatly increases my risk of cancer in my lifetime. Breast cancer, but also colon, leukemia, sarcomas, brain, etc. It's a bit scary going into this current treatment knowing that the likelihood of me getting a second cancer in my lifetime is pretty high (truly, it's over 50% that I have a second, the report I got said my risk of cancer by 70 was "nearly 100%" and I have a lot of years before then).

I'm curious if anyone else has been diagnosed with Li-Fraumeni. How's it going?

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