Fibrolamellar (HCC)

does anyone know anything about research being done on this type of primary liver cancer. My 23 year old brother who before being diagnosed was as healthy as can be. No smoking no drinking ect. We hope to find a cure it is unfair , it is a very rare cancer and more research need to be done on rare cancers.

 

 

  • Hello, Radha, so sorry to hear of you brother's diagnosis. Unfortunately many cancers are being discovered and, therefore, more rare cancers.  Two of those I have are considered very rare.  Cancer Research are doing an incredible amount of research but it all takes a lot of time.

    I do hope that your brother gets the help he needsin the meantime.I

  • Hello sorry to hear about your brothers diagnosis. I was diagnosed with fibrolamellar 7 years ago. Is your brother in the UK? There is research going on in the States.We have a facebook group which is very active if you or your brother are interested in joining. 

     

     

     

     

  • Hello again Radha. I hope you managed to find some resources to help you. I'm going to post a couple of links here in case you didn't and also if anyone else with Fibrolamellar comes across this thread.http://www.fibrofoundation.org a great place for information and news on the latest research taking place.It also has a list of Drs who are experienced with fibrolamellar  

    We also have an active facebook group 'fibrolamellars of the world unite' it is a private group so you will have to send the admin a request to join.