Daniel has always been a daredevil; an adrenaline junky, doing everything fast and breaking a fair few collar bones along the way. Last winter saw him in Canada training to be a snowboarding instructor and enjoying life to the full. One day he crashed against a post at high speed with abdominal impact, so it didn’t surprise him that he had an ache there over the next few weeks – to be honest everything ached really. He’d also noticed that he was a bit breathless climbing the stairs, he assumed it was the altitude. Despite his daily rigorous exercise, he seemed to be losing a bit of muscle, which seemed odd. 

He came home mid-April in time for his 20th birthday but within a week he was at the doctor about his abdominal aching and breathlessness. After many scans and tests, we ended up with a diagnosis of Hepatocellular Cellular Carcinoma – suspected Fibrolamellar variant. He had surgery to remove just over half of his liver, his gall bladder, his spleen, 5 lymph nodes, and patches on his abdomen and diaphragm. The diagnosis of Fibrolamellar Carcinoma was confirmed. 

In the UK, as in much of the world, FLC is considered a variant of HCC – with the same treatment options ie. Surgery to remove everything possible, chemotherapy only if inoperable, with no adjuvant treatment offered following surgery. We felt like we were in a void – the surgeons had done all they could for him, it was stage 4 so almost definitely going to return, but we weren’t being offered any further treatment options. 

Daniel found out about the The Fibrofighters Foundation through Jansher Siddiqui sharing his story on social media (thank you Jansher!) and we contacted Tom Stockwell in July. Tom called me and explained that FLC is very different to HCC – that there are further treatment options, and that because this disease targets young people, they are fit and strong enough to tolerate chemo and immunotherapy. We had an online meeting with Tom and Dr Kent and started the battle to get the Triple Therapy for Daniel in the UK (Nivolumab, Capecitabine/5FU, and Interferon). 

And a battle it was – the UK liver cancer specialists were in solid agreement that treatment beyond surgery does not improve survivability – but they seemed to be basing this on HCC research not FLC; and HCC patients are usually elderly – not fit, strong, young people. We were turned down for further treatment by a number of top liver oncologists and I had reached the point where I thought of flying to Germany for treatment every month would be the only option. We were even turned down flat by the top liver oncologist and the top young adult oncologist at The Royal Marsden – “Europe’s largest comprehensive cancer centre and rated as one of the leading cancer centres in the world” – that was a low point I can tell you! 

I kept pushing and eventually was recommended to a doctor at King’s College, London. I emailed expecting nothing but found he was open to the idea of further treatment; adjuvant treatment to try to kill off any remaining cancer cells. 

The battle continued but with this new doctor leading it now instead of me – he met online with Dr Kent and then presented to his local tumour board to get approval to use the Triple Therapy on Daniel. Then he needed approval from the prescribing board and finally from BUPA, our health insurers. 

A note on UK healthcare – we have the NHS (National Health Service) which is renowned for providing excellent cancer care (free) BUT cannot provide experimental treatment unless part of a formal trial. As a public sector organisation, the NHS has to tick every box and act only in ways which are thoroughly proven to be effective. Nothing about FLC is thoroughly proven – it’s so rare that there just aren’t the statistics that the NHS need. Daniel was no longer suitable for any trials because his tumours had been removed, leaving nothing for them to measure success or failure. Luckily my job included private healthcare and that also covered Daniel, so we were able to seek treatment privately. 

In October, Daniel was the first person in the UK to start the Triple Therapy – a 2-year programme of immune chemotherapy. Within those few weeks he also got a full-time job (with a 45-minute commute each way), got a new girlfriend, crashed his motorbike and broke his collarbone again, and had a very bad rash reaction to the treatment. In December, his reaction to the Nivolumab took a more serious turn and he got myositis – when your immune system attacks your own muscles. Treatment had to stop, and he spent 2 months on steroids to get the symptoms back under control. 

Here we are in Feb ’24 about to restart chemo but not able to restart the immunotherapy due to fear of his body’s reaction to it – everyone is different. 

During the last 10 months we have suffered terrible grief and fear. Back in May we couldn’t imagine being able to live with it but we have learned to. Both Daniel and I have a similar approach to it – we deal with it when we need to, and then we put it to the back of our minds and get on with living our lives. He recovered from the surgery amazingly quickly and has been able to return to normal activities including golf and surfing. He is currently living a normal life – working hard, enjoying time with his girlfriend, seeing friends and family, and returning to golf as the weather (and his collarbone) improve. 

We are both incredibly grateful to Fibrofighters for their endless support, their quick response at times of need, and their warm and friendly approach. Our meetings, whilst serious, always include some humour and a real understanding of what it is like to be 20 years old and with FLC. They know the mental and physical pressure Daniel is under and offer wise advice.  

The battle continues – this time in getting access to Signatera circulating DNA tests in the UK, so that we will be able to see if the treatment he has is effective. 

I am aware of a few FLC cases in the UK but not many. I feel it is important to know who is having what treatment in this country, so that we can share experiences, and support each other. Fibrofighters will pass on my email address to any UK Fibrofighters so please do get in touch.