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Fibrolamellar Cancer

Miss G
Posts: 1
Joined: Apr 2013

I was diagnosed March 23rd. with Fibrolamellar Cancer 12.5 x 9.0 occupying most of the right hepatic lobe.  My procedure (TACE) Trans Arterial Chemo Embolization is April the 25th.  Does anyone here have any information to help me with questions or outcomes?

Thanks,

Miss G

talisman
Posts: 1
Joined: Apr 2013

Hi Miss G,

I am a member of a Facebook group for patients affected by Fibrolamellar HCC as well as their families and friends.  You will find a lot of support there.

 

Here is the link to the group: 

https://www.facebook.com/groups/fibrolamellar/

 

We would love for you to join us!

Tal

AnnaA
Posts: 6
Joined: Jun 2014

<p>Hi,</p>

<p>I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(</p>

<p>I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.</p>

<p>Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works.&nbsp;</p>

<p>&nbsp;</p>

<p>Thank you</p>

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