Age diagnosed: 31
Diagnosis: Fibrolamellar hepatocellular carcinoma (9cm tumor on liver – non vascular, no lymph node involvement)
Treatment: Liver resection (performed laparoscopically)
Follow up: 1 year clean scans! 6 month follow up MRI of abdomen and CT of chest for next 5 years including liver function tests (physical exams every 3 months for 5 years). Then yearly scans/bloodwork/physicals for the remainder of my life.
I was diagnosed with FHC one week post-surgery in late May 2010. My story began when I was about 6 months pregnant and found a lump pushing out under my ribcage. I really didn’t think much of it and asked my doctor during my prenatal appointment and he shrugged it off saying the organs get pushed around during pregnancy and it was probably nothing. Fast forward 6-7 months when my son was only 4 months old. I hadn’t thought about the lump since I was pregnant but by this time I had lost all of the pregnancy weight and noticed the lump again. I went back to my doctor and he told me that I’d be writing my own book on this because he had no idea what it was. He ordered a series of scans and blood work. The radiologist determined that it was a benign tumor on my liver, probably FNC – a benign tumor that is sometimes a rare side effect of taking oral contraceptives. I researched FNC as much as one can and found out that it can grow with hormones. I found some women who had them removed and since my husband and I wanted more children, I wanted mine removed as well (plus, the tumor was the size of my fist and I could feel it in my abdomen – it creeped me out!).
My doctor had me see a GI specialist (the closest we have to a hepatologist in the entire state of Montana) and it was a horrible experience! He didn’t take even 30 seconds to scan my chart before entering the room! And when I told him I wanted the tumor removed he said he’d never heard that being done before. I had asked him what his level of experience with FNC was and he said he’d recently attended a seminar on various benign liver tumors. So his advice to me was to stop taking oral contraceptives and don’t have any more pregnancies. I had never been so irate at the end of an appointment!! I asked his office for a referral – I was willing to travel to see a real expert so they referred me to the University Of Washington Medical Center in Seattle. Insisting on a referral and a second opinion saved my life!
A few long weeks after my appointment with the GI doc, my hubby, son and I flew out to Seattle and met with a surgical hepatologist. UW has weekly tumor review boards where a group of surgeons, oncologists, and resident doctors all sit around and evaluate each case. After looking at mine, they determined that the tumor showed too many atypical characteristics to be conclusively diagnosed as FNC – because of that – and the size of the tumor – performing a biopsy was out of the question since there was too large a margin for error. So I was given two choices – leave the tumor in and risk it becoming malignant or rupturing – or have it surgically removed. We returned to Seattle a few weeks later and I had a laparoscopic liver resection performed on May 26th 2010. I was in the hospital for 4 days. On the 5th day I flew home (which was probably too soon but I was eager to heal and recover in my own bed – plus we had put our house on the market the day we left for Seattle and already were under contract – so we had to begin house hunting as well!).
A week post-surgery I still hadn’t heard the pathology results so I called my patient care coordinator. Honestly, cancer still hadn’t crossed my mind, even after being told there was a possibility the tumor could become malignant. I felt blindsided when my surgeon called me back and explained that the pathology results caught them by surprise. He explained that it was FHC and began instructing me on long term follow up, finding a local oncologist, follow up scans/blood work, returning to Seattle if it were to return, etc. At that point in the conversation I was completely frozen. I couldn’t digest what he was telling me at the time – how could I, a new mom, 31 years old have cancer?!! My world was turned completely upside down!
Since the diagnosis, I’ve had 4 follow up scans and all have come back clean! Like anyone with FHC, finding information was like searching for a needle in a haystack. My local oncologist had no previous experience with FHC so my husband and I have been my health advocates and educators to our doctors, friends, and family about this type of cancer. In February 2011, I returned to Seattle in search of more answers and met with an oncologist at the Seattle Cancer Care Alliance – who coincidently has sat in on some of the reviews of my scans (I have all my scans and reports sent back to UW for a second opinion). He outlined a lifelong surveillance plan and sent it to my local oncologist, my surgeon at UW, and my family doctor. Now that everyone is on the same page, I feel like I’m better able to cope with the FHC diagnosis.
February 9, 2016 Update
I am now 37 years old. It has been over six years since my tumor was discovered and over 5 ½ years since my liver resection. I am down to yearly scans and blood work and continue to have a clean bill of health with no signs of disease. I’m grateful that I have the opportunity to live my life with only yearly scans, yet I still have anxiety about what could happen. In many ways we (my husband and I) have been changed forever by this experience. Life’s moments are fleeting and since our Fibro journey began, we have a much deeper appreciation for life and constantly try to balance living for the moment, living a healthy and purposeful life, while saving for our future, knowing that this disease (or another disease or tragedy) could happen. It’s an approach to life that I think only those that have been closely touched by an experience like this will understand.
Our family has grown since this journey began. We welcomed our daughter into the world in June 2013. At this point in my journey I feel like I am living a fairly normal life for a 37 year old, balancing family,health, and work. I live for my family and the memories we are making!