David’s story: “I bring my own records with me to every appointment”

David was diagnosed with liver cancer during the COVID-19 pandemic. He has had TACE therapy and SBRT treatment, and is on the liver transplant list. Thank you for sharing your story, David.

TACE and SBRT have helped to control the size of the tumour.

My story began on Burns Night. I’d had a nice evening with friends but I suddenly had terrible stomach pains so I went to A&E. Doctors suspected kidney stones and sent me to see my GP.

My GP sent me for a scan which didn’t show any kidney stones. Then COVID-19 hit and my further tests were delayed. I was still in pain so I went back to my GP who arranged for me to have another scan. This time, the scan revealed a tumour on my liver. Doctors realised that the tumour was actually there in my first scan too, but luckily it hadn’t grown. I was diagnosed with alcohol-related cirrhosis and primary liver cancer (HCC).

On my first meeting with the cancer specialists, they talked about the possibility of a liver transplant. I was so shocked at this that I had a panic attack. At the time, doctors thought could have been a heart attack, and although I do have a cardiac history, this wasn’t a heart-related incident. Nevertheless, as a result I had to have a lot of test and checks on my heart to make sure I was ready for a transplant.

Treatment 

I had TACE (transarterial chemoemobilisation) therapy which I found was painless and actually quite interesting because I could watch what the doctors were doing in real time on TV! I also had SBRT (stereotactic body radiation) therapy over ten days in London. These both helped to control the size of the tumour.

I’m now on the liver transplant waiting list and have regular tests, scans and check ups with my multidisciplinary team. I find it frustrating that my cardiology, gastro, cancer and radiography appointments are all in different hospitals that aren’t joined up electronically to share my full medical records with each other. This can cause unnecessary delays, so I bring my own records with me to every appointment which helps doctors stay up to date with my clinical history.

Nobody knows how long I’ll have to wait for my transplant. As I’ve had heart conditions, I’ve been told that I’ll need a very good quality liver so as not to put too much stress on my body during surgery.

I don’t use the internet to self-diagnose but I find it really useful to research my treatment options online and prepare myself for appointments with my doctor. Websites like the British Liver Trust’s are invaluable for this.

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