HCC Fibrolamellar type

[DadnIsaac]

Is anyone familiar with this type of HCC? My 17 year old son has just been diagnosed. I need advice ASAP if at all possible.

[andersoncathl Caregiver]

Hello - I am so sorry to hear about your son's diagnosis. I'm sure this is a shock. I don't know anything about that form of HCC. Back in 2003, my husband was diagnosed at age 35 with HCC (no cirhossis or hepatitis history). I don't know where you are located but back in 2003, we visited specialists at Sloan Kettering in New York (Dr. Abou-Alfa) and Dr. Carr who was at UPMC (I think he is now somewhere in the Philadelphia area). We also took a trip to MD Anderson in Texas. Multiple opinions is always good, in my opinion, if you have the means. It can be very time-consuming to do the research, make the appointments and travel when all you really want to do is start a treatment, get surgery, something. I do recall that at these 3 major cancer centers to which we traveled, they said they tend to see the younger people...so maybe they have experience with this specific type of HCC. Best of luck to you all!

[DadnIsaac Caregiver in reply to andersoncathl]

Thank you for your comments and advice! Due to some time constraints, I have only been able to arrange a second opinion electronically. We are in East TN and would love nothing more than to explore our options in person. It's just a risky delay that we can take at the moment. His oncology team at ET Children's in Knoxville is simply amazing and has / will be providing us the advice from respected Drs. from across the nation. They are as well, very much open to hearing second opinions for confirmation of their proposed treatment plans and perhaps another approach for the initial or 2nd line of attack. Sloan Kettering has came up numerous times in my research and so that will be my focus for the day. Thanks again for taking the time to share! With all of your exhausting efforts, I hope that you all were able to find the solutions and comfort with your approach to attack!

[andersoncathl Caregiver in reply to DadnIsaac]

Trust me, I hear you on the time constraints and overwhelming sense of urgency with this diagnosis. I was fortunate that I was able to take some time off from work and that we had some doctors in the family who helped us navigate things a little bit. Again, I'm not a doctor but I was reading another post from someone here recently and he is having great success with Nivolumab. Apparently, this was only recently approved for treatment in HCC (9/17). I had not heard of it. Something to maybe ask your doctors about. My husband died 6 months after diagnosis. We did chemoembolization which did buy him some time. Unfortunately, he was not a surgical option due to portal vein involvement. It is difficult with something that can be so aggressive but that was 15 years ago and things change everyday with treatments/research. I'll be thinking of you.

[AndreaWilson_Founder Partner Editor Caregiver]

I am so sorry to hear about your son. Fibrolamellar HCC is very rare. It is not related to the more common HCC, which makes up 84% of all liver cancers. Unlike HCC, there is no known cause for Fibrolamellar HCC. (In that sense, it is very similar to pediatric cancers). Reach out to this researcher: Dr. Sanford Simon at Rockefeller University.* When his daughter was diagnosed, he shifted his entire scientific focus to figuring out the genetic sequencing behind FHCC. Also, you can look at the Fibrolamellar Foundation: fibrofoundation.org/

*If you cannot find Dr. Simon's contact information, I can track him down. Feel free to use my name. He and I spoke at a conference together last December.

~Andrea

[DadnIsaac Caregiver]

Thank you! We're going to MD Anderson Wednesday. I'll try to locate him.

[DadnIsaac Caregiver]

I emailed him this morning. Thank you so much!