I have been in the world of liver disease for the last 18 years, initially as a liver transplant coordinator and then as a clinical nurse specialist (CNS) for patients with hepatocellular carcinoma (HCC). This is a role I set up and developed over the following 10 years. It is a role which encompasses transplantation, surgery, hepatology and oncology. It could be frustrating, depressing, exciting, emotionally draining and yet rewarding in equal measure.
As we all know only too well once the word ‘cancer’ comes into the conversation about diagnosis the rest of the information given goes in one ear and straight out of the other. This is one of the reasons why the role of HCC CNS was and still is so important. I was able to sit down with the patients once they had seen the doctor and been told their diagnosis. Almost without exception shock, fear and grief were the overriding emotions. Then came the questions that either they had not thought to ask or were too afraid to ask, for example ‘am I going to die, how long have I got, will I be in pain, why can’t I have a transplant, will I be able to work? Some also expressed anger and frustration at the time it had taken for a diagnosis to be made.
Once that first contact was made, the patients knew that they had someone they could speak to who would provide information, consistency and continuity in their care. Getting to know the patients through the treatment process meant that we could have honest discussions about treatments and the potential effect on the length and the quality of their life. They knew that I would be an advocate on their behalf.
There is no doubt that HCC is a complex disease to treat because for most people there is an underlying liver disease as well as the liver cancer. Each disease impacts on the other, for example, if someone has a relatively small liver cancer but the liver is not functioning well then this will affect which treatment options can be used. I was able to explain to the patients the rationale behind treatment decisions made at the multidisciplinary team meetings.
The treatments take a physical and emotional toll not just on the patient but also family members. Financial worries can add to the strain. A lot of the treatments can only be delivered at specialist centres and this can cause a great deal of stress. It is vital that as a CNS I was able to get them support from all the appropriate agencies. I also set up a SKYPE clinic to enable some patients to be ‘seen’ at home rather than having to come to the hospital for clinic appointments.
When I first started as an HCC CNS if surgery, transplant, interventions by radiologists such as trans arterial embolisation or radiofrequency ablation were not possible there were no options other than trials. Today this is certainly not the case. There are new types of treatment such as targeted radiotherapy, an increasing range of targeted drugs, immunotherapy and many trials testing various combinations of treatments.
It is a hard road for those diagnosed with HCC but there is hope. What we need is early diagnosis because so many people are only diagnosed at the point when there are no potentially curative options. This will only come when there is a recognition of the risk factors for HCC and this means identifying liver disease early, something which the British Liver Trust is actively trying to promote.