Breaking Down Key Misconceptions in Hepatocellular Carcinoma Care

After an unexpected hepatocellular carcinoma (HCC) diagnosis following treatment for pancreatic cancer, Emma and Paul reflect on the importance of advocacy, communication and persistence throughout their care journey.

In this Q&A interview with CURE, the couple explains that Paul’s HCC was discovered during follow-up imaging, despite having no liver-related symptoms. They describe challenges securing a clear diagnosis, including inconclusive biopsies and initial dismissal of concerns, emphasizing the value of second opinions and pushing for answers.

Emma discusses stepping into an advocate role as a caregiver, while Paul highlights how having support during appointments helped ensure information was understood. Together, they address misconceptions about HCC, noting it is often wrongly assumed to be self-inflicted, and stress that early detection can open the door to effective treatment and long-term survival.

CURE: To begin, could you each share how HCC first entered your lives and what the earliest stages of the journey looked like?

Emma: For us, it came completely out of the blue. Paul didn’t have any signs or symptoms of liver disease — no jaundice or anything that would prompt investigations. He’d had major surgery, a Whipple procedure, and during post-op scans they saw something in his liver. At first it was, “There’s something there, shall we look at it?” One person said no, another said yes. Tests followed, and suddenly, after dealing with pancreatic cancer, another cancer appeared. It was complete shock, especially coming off the back of everything he’d already been through. We’d spent two or three years getting to the pancreatic diagnosis and thought we were over that hurdle, then another one appeared.

Paul: I can’t really add much. It was exactly that. No symptoms. I’d been unwell for two or three years before they found cancer in my pancreas. The operation and recovery were horrible, but we were positive. I had surgery in May and a scan in October, expecting it to be all clear. Instead, they said they’d found a tumor in my liver. Two biopsies later, they told me it was HCC and that surgery was the plan.

What were the most significant challenges you faced when seeking information, guidance or support after diagnosis?

Paul: Initially, it was with the NHS. The first biopsy wasn’t conclusive, and my HPB (Hepato-Pancreato-Biliary) surgeon was dismissive. He thought it was just a shadow. Thankfully, I’d been referred to the NET (neuroendocrine tumor) team at the Royal Free, and that consultant pushed for a second biopsy. That came back 95% certain of HCC. We’ve often said we’re not sure where we’d be if he hadn’t fought for us. The biggest challenge was getting confirmation and the right treatment plan.

Emma: It felt like it wasn’t being taken seriously. We tried to give information that might explain where it came from. Paul has a rare hereditary blood condition and had been on steroids for years. One registrar was completely dismissive when we raised that. We weren’t happy, so we contacted Paul’s clinical nurse specialist, who said the information was relevant. There was a period where nobody seemed to think it was a problem, especially the team focused on the Whipple recovery. If it hadn’t been for Christos, we don’t know where we’d be.

Paul: Even getting the diagnosis was hard. Different radiologists would interpret scans differently. We weren’t given information or signposted anywhere. Once the second biopsy confirmed it, it was basically, “You’re going to surgery.” The journey to get there was difficult.

How did you navigate the emotional and day-to-day adjustments?

Emma: Everything happened back-to-back. We didn’t have time to stop and think. We just got through it. Only afterwards did it hit us how close we came to losing Paul. There were times we were making funeral plans. You cope because you have to, then later it catches up with you. We had to learn a new normal — medication, me becoming more of a nurse than a wife, then learning how to be a wife again. I don’t really know how we got through it.

Paul: We definitely dealt with it differently. I’ve had a rare blood condition, a stroke, heart surgery, then cancer. Sitting there waiting for the Whipple, I came to terms with not waking up. The patient becomes the focus, but the carer has to hold everything together. We also worried about our son, who was at university. The hardest period was Christmas, when we knew surgery was coming but didn’t know when. In a strange way, Christmas helped us park it for a bit. I’m pragmatic. It was almost, “Here we go again.”

What is most misunderstood about HCC?

Paul: People assume it’s self-inflicted — alcoholism, drug use. That’s not always the case. Even if it were, it still wouldn’t be someone’s fault.

Emma: There are so many assumptions around liver disease. Paul didn’t fit the usual boxes. Yet people focus on the negative explanations. That judgment is hard.

Paul: Any liver disease seems to carry that stigma. You end up feeling defensive, even when you shouldn’t have to.

Emma, how did you find your voice as an advocate?

Emma: I was stubborn. I became a bit of a mama bear. I kept folders of notes, letters, scans — everything. I asked questions constantly. Some clinicians didn’t appreciate it, but I was terrified of losing Paul. We’ve been told by nurses and doctors that if we hadn’t pushed, he wouldn’t be here. That’s a scary thing — being at the mercy of the system. You have to chase appointments and follow up constantly. We’re grateful for the care and that we don’t pay for it, but the system is underfunded.

Paul: Advocacy helped because we worked as a team. We’d hear different things in appointments and debrief afterward. During COVID, when Emma couldn’t attend appointments, it was much harder. After my hepatectomy, I had complications and was in hospital for weeks. Communication broke down, and Emma was left without information. Once doctors started updating her properly, things improved.

Emma: One person can’t absorb everything in those appointments. Having someone with you makes all the difference.

What message would you share with others newly facing HCC?

Paul: There are options, especially if it’s caught early. I went from diagnosis to surgery, and now I’m five years post-op, living our best life. I look fine on the outside, but you don’t want to see my insides. Still, it’s possible to get through it.

Emma: It doesn’t have to be a death sentence. The liver is remarkable. They took two-thirds of Paul’s liver, and it regrew in nine weeks. I wouldn’t say it’s easy, but in our experience, it was manageable.

Paul: Don’t beat yourself up for feeling negative. It’s a lot to process emotionally and mentally. You can’t be positive all the time.

Emma: Communicate. We’ve learned to be more open and honest with each other. Bottling things up doesn’t help.

Paul: A problem shared is a problem halved.

Transcript has been edited for clarity and conciseness.

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