Nobody? Really?

Hello,

I was just checking the the list of cancer specific forums and realized that liver was the only empty one and figured that should change!

My name is Emilie, I am 20 years old and I was diagnosed with fibrolamellar hepatocellular carcinoma, a rarer form of liver cancer that affects mostly younger people with otherwise healthy livers.

I started testing in Janurary 2013 before finally having a surgery to remove a 14cm tumor and and a whole bunch of lymph nodes in March. I've recently had my first post-op scan and they think I have 2 more tumors on my ovaries, so I am currently undergoing more testing. (I actually was just with my oncologist this morning and found out that the results from my PET scan were inconclusive so looks like we're moving on to a biopsy -_-).

If that comes back positive for cancer my doc wants me to start on sorafenib (nexavar) if anybody has any experience with that...

so that's all for now!
Emilie

Comments

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  • Hey EmieMac,

    I was 35 years old when I was diagnosed. The only real effect other people saw, not me, was I lost a lot of weight. I lost about 40 pounds. They removed that size of a tumor? Wow! I have one tumor that's 9 cm & another that's eleven cm. I found I wasn't even a candidate for a liver transplant. I didn't even meet the outside criteria. Are you still taking sorafenib? That's the medication they have me on.
  • Hi, I was diagnosed at 27, learning it is very rare for younger age group to develop liver cancer. My stage as well is inoperable. Oncologist suggested nexavar as well, and trying y-90 treatment again after unsuccessful try last month.  

    I know this cancer is uncommon for the younger generation, please feel free to message me so I don't feel alone in this :(

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