Surviving Fibrolamellar HCC

Surviving FHCC
Dear Prayingalot, SueRelays (btw so do I- its so empowering!!), and sgrmoranda (Sue),

Its wonderful to hear from all of you. I am sorry to hear you are all battling this horrid disease in some manner. I congratulate you though on your strength - that is, in my opinion, a huge part of the battle!

The quick summary is, I was 23, in graduate school in Boston...drank too much one night, the next day I ended up in the hospital where they found an 8 lb. tumor all over my abdomen. It seems I "over worked" my liver that night (oops!) but the good news is it helped them discover the cancer. I had exploratory surgery and was told I had 3-6 months to live. I did an experimental chemo which did nothing to my tumor. I considered chemo-embolization but did not like the "statistics" associated with that and as fate would have it...I discovered an amazing liver transplant surgeon who thought he could take it out. I was supposed to be in O.R. 4 hours but it took 10 hours. He removed the 8 lb tumor, it was wrapped around my stomach, heart, crushed veins, arteries, etc. cut away 90% of my liver and within 4 weeks it regenerated and 14 years later, no reoccurance.

I do not think there was anything the helped with my surviving besides a positive attitude and the amazing surgeon I had. Obviously he saved my life so I think the world of him but he is a liver transplant surgeon who is a rare gem among surgeons in that he actually cares about you as a person and doesn't have the stereotypical surgeon "god-like" complex. I would recommend him in a heart beat and if you are considering resection I'd suggest a trip to Boston to get his opinion, Dr. Roger Jenkins of Lahey Clinic. I've since moved from Boston many, many years but I still every year send him my films and travel to have him do my follow ups.

I did do chemotherapy, I did an experimental chemo at the time and it did nothing to my tumor, this was before my surgery though. I did not do chemo after because my surgeon was confident he got it all. If your surgeon is suggesting it after..well, I'll be honest, I did not have that scenario. Thinking now though, I'd assume that meant he/she are not 100% certain they got it all? And I would do it. That is just my thinking though.

One thing I did do was Bio-feedback and really worked hard on that - meditation. It was incredibly valuable for my pain management and managing stress and anxiety. Bio-feedback was offered in my hospital and I highly suggest it.

Prayingalot, I hope the surgery was easier for you than it was for me. For me it was incredibly tough. 10 hours on the table and 6 years to recover from it literally. I would do again though if I had to, hands down. I was completely unable to digest food after the resect - 14 months I lived on TPN (IV fluids) and food got me ill for another 5 years after that. While it took so long to recover I would still recommend a resection if it is an option. I would of course recommend Dr. Jenkins do it also but I'm biased of course! That is uncommon though, the problems I had...it was just me and body make up and the extent of my tumor. Unfortunately though, no matter how much time passes, the worry of reoccurance NEVER goes away. It isn't in your mind as often but there isn't a day I don't worry, it is just not as all consuming.

I still have serious health issues, the cancer destroyed major veins and arteries in and out of my liver. I have endoscopies every 3-6 months to control internal bleeding (even 14 years later) however none of that matters...I have had 14 years of cancer-free life and for that I am incredibly grateful.

I was given under no uncertain terms after my exploratory surgery horrible statistics. Dreadful, dreary, and the callous surgeon who did that surgery, when I asked him what my chances of survival were, actually said to me "I have no idea how you are sitting in front of me now, I cannot say there is any chance"...So those of you facing such dreadful statistics I say...keep this one thought in mind:

All the research, statistics, facts, and figures your doctor has given you to determine your or your loved ones fate – keep in mind there is one fact s/he is missing. The one variable they have not calculated into their formulas before to come up with those statistics and that variable is you! This time, this place, and this person - you. Now, I was never a good math student but even I know that you add an unknown variable to any equation and you will come out with a different result! When you hear the odds are stacked against you, say to yourself, "yes but!!" but - here is an x factor not yet calculated into that formula and that X is me! It is a small flicker of hope. It was enough for me to realize they do not know for certain how this will work out. I try to remember a favorite quote…I used to say it to myself on those really dark, dark days and they happen a lot when you are battling cancer…just remind yourself that “to be a star, you must shine your own light, follow your own path, and don't worry about the darkness, for that is when the stars shine brightest”.

I have to add that in between my 3 and 4th round of chemo my mom took me on vacation - a mother/daughter get away. For some unknown reason I decided I wanted to go to a Dude Ranch in Colorado...I figured, a girl from Boston..I had never been out west, something new. I thought the nature would be good for my stress and for making peace with my terminal state. Our first day there my mom came back from her afternoon ride and said "My wrangler was the nicest young man, you should talk to him!" I joked back "Good golly Mom, I'm here to make peace with my death and you are match making?" One thing I've learned in my 14 years of cancer-free living, Mom always knows!! That "nice young man" and I been married for 10 wonderful years now. We have a beautiful son and are currently adopting our second child a lovely baby girl. I hope for you that in all this ugliness something beautiful comes of it, it is completely possible.

Be healthy and well.
I am would love to connect with any of you. Feel free to email me at: windygap96@yahoo.com Thank you for reaching out it gives me hope.

Jennifer