Christopher’s Story
Christopher was 36 years old when he was diagnosed with Neuroblastoma for the first time. He talks about the isolation of having a cancer predominantly diagnosed in children, as well as his efforts to live each day as it comes.
In the summer of 2020 I started to get intense dizzy spells. I visited my local GP, but as we were in the middle of COVID 19 it was hard to get an appointment. Luckily my doctor is great and arranged for me to come in to be checked over. We went through a full inspection of blood work and blood pressure monitoring. My blood pressure was extremely high and my kidney function was not in a good range. I was sent for a scan and received my results at the end of 2020…
I was 36 when doctors found a tumour on my left kidney, they had hoped that this could be removed with surgery. They opened up my entire abdomen and removed my left kidney, unfortunately three months later it had been discovered that the tumour had spread. It was then I was told it was neuroblastoma.
“I hadn’t heard of it before… I couldn’t believe it was happening, I was in a bad place.”
It had already been difficult to think I had a tumour and then to discover it had spread was incredibly hard to come to terms with. I did a lot of research because I didn't know about the disease. I also researched other people my age with neuroblastoma but struggled to find anyone.
“It felt like a dagger in the heart, I was very lost”
I was initially tested in Cheltenham and then went to Bristol for my surgery and my further treatment for Neuroblastoma, which included long bouts of chemotherapy which were incredibly challenging. After that I was moved on to Dr Mark Gaze at London UCLH, who I became friends with and started IMBG therapy and radiation as well as more chemotherapy. This was gruelling, I didn’t take well to the treatment and had absolutely no energy, was vomiting a lot, bad headaches and the smell of food made me feel sick. It wasn’t until I had my stem cell reinfused that I felt better.
Thankfully I was very close with my family. I had been living in Lancashire and had moved down to Cheltenham just before I was diagnosed. It was very lucky as it meant that I was close to my family for support. My mum, my step father, two sisters and niece were a great support during all the treatment.
I think it was very difficult for my mum, she had been through it all before with my dad, who unfortunately died at 38 from Leukaemia. It felt like time repeating itself. It definitely opened up a lot of old wounds for myself and my family. But thanks to research treatment for cancers has gotten better in the last 22 years and so I am hopeful.
Most of my friends were still up in Lancashire, they offered to come down but I told them not to worry. One friend Steve was amazing though, he was there throughout and came to see me after I had my stem cells reinfused. He also ran the Edinburgh marathon for Neuroblastoma UK. Even though it was the summer he had to run through terrible weather, which he was not too happy about, but he did raise about £1000 for Neuroblastoma UK which I am incredibly thankful for.
I’ve tried my best to carry on living my life. I was a construction worker before I was diagnosed - training to be a construction site manager, unfortunately since my diagnosis I have not had the energy. But I still continue to try and live each day. I go on holiday, I try to go to the gym regularly, I met my girlfriend during my treatment and ran the Cheltenham Half-Marathon for Neuroblastoma UK - raising £1000!
“Not every day is good, I’m not always positive, but I do try to be.”
Recently I joined a Neuroblastoma event and I got to meet lots of parents of children with neuroblastoma as well as some people who have been diagnosed themselves. Lots of people were really shocked with my diagnosis as it is very uncommon in people my age, so they were all very interested. But it was really nice to be able to talk to so many people that understood and had experience of this illness.
My disease is still stable with metastasis in the bones and liver. So far the doctors have been keeping a close watch on it. Going forward they are also considering the possibility of a new clinical trial I could be put forward for. The goal is to keep it under control so I can carry on living. Thanks to the amazing doctors and medical professionals I have met over the years and new advances in treatments I’ve had time to still experience life.
Thank you to Christopher for sharing his story.
Current research into neuroblastoma for older children and adults
Neuroblastoma primarily affects young children and infants. Though relatively rare, it is the most common cancer in children under one year old and frequently occurs in those under five. Less than 10% of neuroblastomas are found in patients older than ten years. When the disease occurs in adolescents and young adults, it is associated with a poorer prognosis compared to younger children. Moreover, the response to treatment in these age groups varies widely and is not fully understood, resulting in no standard treatment guidelines for older children and adults.
Dr. Azhar Hafeez, a clinical research fellow at the University of Sheffield, is conducting PhD research to gain a deeper understanding of neuroblastoma in older children and adults. Collaborating with Dr. David King, a consultant paediatric oncologist at Sheffield Children’s NHS Foundation Trust’s Haematology & Oncology Department - the Principal Treatment Centre for children with cancer and leukaemia within South Yorkshire, Lincolnshire and North Derbyshire. Hafeez is reaching out to cancer centres across the UK to gather information about patients over the age of 12 who have been treated for neuroblastoma. This includes details on the treatments used and their effectiveness. Additionally, the research will review previous studies on treating older neuroblastoma patients to identify the most effective therapies.
Dr. Hafeez is also using a laboratory model of neuroblastoma with genetic abnormalities similar to those found in older patients to explore new treatment methods. The aim of this research is to improve outcomes for this small but significant group of neuroblastoma patients.
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