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Surviving Fibrolamellar HCC

windygap96
Posts: 3
Joined: Jan 2010

I am a 14 year survivor of fibrolamellar hepatocellular carcinoma. Originally diagnosed in 1995 at the age of 23 in Boston, MA with an 8 lb tumor I have been blessed with 14 years of non-reoccurance. I am wondering if there are any other FHCC survivors out there from anywhere and/or from or treated in the Boston area? I also am interested in finding out what is new in the area of the fibrolamellar variant if anyone has any research to share.

As always, I'm grateful to the American Cancer Society for their programs (such as this discussion board), the surgeon who so humbly saved my life had been funded in part by the ACS and I'm always grateful to their amazing community and programs.

Be well.
Jennifer

prayingalot
Posts: 3
Joined: Jan 2010

Wow! That is great news. I am 67 years old and had the tumor and a third of my liver removed 6 weeks ago. I am a wreck worrying about recurrence. Did you do or take anything that you think helped yuor survival?

SueRelays
Posts: 489
Joined: Dec 2009

Hi!
How was the surgery??? Tough...in the hospital long? How is your recovery so far?
Looks like I will be facing the same here in a couple of weeks. Did you do chemo at all?
I had an anal cancer that has spread to the liver. Two tumors on the outside of the liver. Was set to do chemo this week, but then was introduced to a Surgical Oncologist that may opt to do the resection. I'm thinking maybe then, I won't do the chemo. What advice did you get?
I understand the worrying....I wish I had the cure for that. I've been worrying ever since I was first diagnosed with the anal cancer, that was supposedly in remission just 2 years ago....also had a non smoking lung cancer and had a 1/5 of my lung removed last year. this stuff is RELENTLESS!!! I am 51.

sgrmoranda
Posts: 7
Joined: Dec 2008

Hi,
My name is Sue. My daughter was diagnosed with FHCC in March of 2005 on her 18th birthday. I'm sure she would love to hear from you. Her tumor was quite large upon diagnosis. She had 40% of her liver resected and 6 lymph nodes removed. Since then, she has had at least another 4 surgeries, undergone chemo therapy, chemo embolizations and stent procedures due to a nicked bile duct in surgery #2, and has had treatment for a serious chemo embolization burn.

What is your story? Do you mind sharing it?

We'd love to hear more about your survival. Hoping your continue to do well.

Sincerely,
Sue

SueRelays
Posts: 489
Joined: Dec 2009

My name is Sue as well. I was diagnosed with anal cancer in 2008, and also a non smoking lung cancer. Had a 1/5 of my lung removed on Mew Years Eve last year, then THIS New Years Eve found out the anal cancer has metastized to my liver. I am only 51. Underwent chemo and radiation for the anal cancer. At this point I have changed treatment plans for the liver tumors. Was set to start chemo this week, but was introduced to a Surgical Oncologist specializing in tumors of the liver and pancreas. Waiting to see him now, but am thinking of the resection, and maybe NOT doing chemo......any ideas?????? SOOOOO great to hear from survivors, as this one scares the crap out of me!!!!

windygap96
Posts: 3
Joined: Jan 2010

sgrmoranda,
I am sorry to hear this. As a parent, I could not imagine, truly. When I was sick I know it was hard on my mom but I could not possibly understand. I would hear her cry sometimes and the weight of her sadness was difficult for me then because I was so powerless, powerless to her sadness and powerless over the outcome. I was not a mom then though, so I did not understand.

4 surgeries? I don't understand? Why so many? I have enormous faith in my surgeon, I know though that he too has not had every one of his patients as successful as me. "Nicks" I understand are common, it is a difficult procedure and a great deal of bleeding and cauterizing that takes place, I too had a nick (hence my inability to digest food for so many years). For me though, not having cancer was worth it. I know my surgeon worked hard and cared about my outcome, so I know the nick was not because of negligence but from the sheer massiveness of all the work to be done. I hope you have the same confidence in your surgeon. I would not say the same thing for the first surgeon I had though, trust me. He was a callous, arrogant SOB and I was glad to be rid of him! I can say that now, then of course, I did not understand how dangerous he was. I am grateful to have met another surgeon to make me see the difference.

18 is too young to be facing such a challenge, I thought 23 was! Every year to celebrate another wonderful year I participate in the local Relay, if you haven't done that, I HIGHLY recommend it - I think you and your daughter will find a great deal of strength in participating. You don't have to have a team or raise money for the ACS - just go out and have your daughter and you walk in the Surivor Lap and the Caregiver Lap and enjoy the survivor reception. I find it so empowering to be around so many survivors. Relay for Life, if you have been I highly recommend.

Anything I can do to help please say the word - I'd be glad to!
Best of luck to your daughter!
Jennifer

windygap96
Posts: 3
Joined: Jan 2010

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

AnnaA
Posts: 6
Joined: Jun 2014

Hi,

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 :(

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.

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.

 

Thank you

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