February 2008 When I was 35 I noticed a lump in my stomach. After numerous blood tests a CT scan, ultrasound and an MRI I was diagnosed with FNH a benign liver tumor. The only symptoms I had were constant heartburn and a pain in my right shoulder. As I was told the lump was benign I decided to put the surgery off till after the summer.
September 2008 I had the surgery to remove the lump. It had grown considerably over the summer and was 22cm by the time it was removed. I had the whole left side of my liver removed along with a small portion of the right and my gallbladder. It took almost a month to get the pathology back on it.It wasn’t benign after all; it was a rare form of cancer called Fibrolamellar Hepatocellular Carcinoma.
I was lucky that the cancer hadn’t spread and the Surgeon managed to remove it all during the surgery. I was told that I would have scans every 3 months as this type of cancer has a high reoccurrence rate.
April 2009 I decided to change hospitals and found one that had some experience with this type of cancer. They decided that as the cancer had all been removed during the surgery then I would only have to have ultrasounds of my liver every 6 months. The scans were always clear so I thought all was well.
November 2010 I started having pains in my stomach so my Dr ordered a CT scan. My liver was clear but there was a large lymph node growing near my pancreas.
January 2011 I had surgery to remove the lymph node. They reopened the scar I had from my first operation. It was major surgery again but once again I was told they had removed all the cancer. As they had only been scanning my liver it had been missed on the scans and had been growing for a while. I was then put back on 3 monthly scans (MRIs) About 9 months later after having a couple of clear scans 3 small lesions were seen in my liver. As they were so small the Drs recommended just scanning me every 3 months and keeping an eye on them.
October 2013 The lesions stayed the same size until October 2013 when one of them started growing. I had another liver resection where the surgeon removed one of the lesions. He was unable to find the other two so I was still scanned every 3-4 months.
June 2015 – Feb 2016 The lesions had started to grow slightly so the Drs recommended Radio Frequency Ablation on 2 of the lesions. The 3rd was too close to an artery so they couldn’t ablate that one. The RFA worked on only one of the lesions so I was still left with 2 lesions. My scan in December showed there was a new lesion in my liver. Due to the size and location of the lesions they are currently inoperable. As of February 2016 there are still 3 small lesions in my liver.
August 2018 It’s almost 10 years since my first liver resection.I currently have 3 small lesions in liver and 2 in my left lung. The ones in my lung have not grown at all in the last 4 years and are probably benign.
The ones in my liver range in size from 8mm to 12mm. They don’t seem to be growing and they don’t affect me at all. It’s been 3 years since I last had any treatment (RFA) I’m still scanned every 6 months but on the whole, I feel very well and live a totally normal life.