"Being involved in research and in something that changes lives is a good thing to be part of"

Helping to shape teenage cancer research: Max’s Story

Max is a healthy 19 year old, currently enjoying life as a Biomedical Sciences student at University College London, where he can often be seen cycling as part of his University squad and socialising with his many friends in and around the city. Having been through a tough journey with cancer, Max remains a positive and ambitious teenager whose experience of cancer research has inspired him to become more involved in shaping future teenage cancer research.

Max was diagnosed with testicular cancer five years ago, when he was fifteen years old. The cancer diagnosis was made by a doctor at Bedford Hospital after Max found a lump in his testicle earlier on in the year when he was fourteen. Max knew he had a lump, but was reluctant in reporting it to his parents or a doctor due to feeling embarrassed, and so assumed it was probably nothing. Not reporting the lump at the time Max had first found it had a big impact on the cancer, which had spread, and meant that treatment options would be more difficult for him:

“I was diagnosed with testicular cancer at Bedford hospital in November 2012, after going to see the GP in October about a lump that had first presented in the spring of that year. Sitting on my symptoms for so long definitely made treatment more difficult, but I have mixed feelings about what I'd say to my younger self about it. After being diagnosed at Bedford, I was immediately moved to Addenbrooke's for further treatment."

“I felt reassured when I was diagnosed, but I know that's strange. I think diagnosis allowed me to put a name to the problem that had haunted me for that long (and by that time the symptoms were plain to see), so the diagnosis meant I was able to focus on how we were going to tackle the problem rather than guess at what it could be. That said, the vague memories I have of the clinician who gave me my diagnosis include him telling me that 'it was obvious' and that 'I should've spoken to someone about this sooner', which didn't help the matter.”

Max was moved to a more specialised hospital which meant he could receive the cancer treatment he needed, and it was here where he was first introduced to a research study called; ‘A pipeline to quantify serum and cerebrospinal fluid microRNAs for diagnosis and detection of relapse in paediatric malignant germ-cell tumours (GCT).’ The study aimed to investigate the link between the expression of specific microRNAs with the progression of germ cell tumours, particularly in cases of relapse, and to develop a robust way of quantifying these microRNAs. Max was keen to help, as he goes on to explain:

“Research was first mentioned when I moved to Addenbrooke's, and met my consultant Matthew Murray, who ran the study. He said I'd be an ideal candidate for his research, and being a yes-man, me and my mum agreed that I should take part there and then, before we even saw any paperwork! At the time I barely knew what a clinical study was (and I still struggle sometimes), but my clinician was paediatric by training, and so any questions me or my mum had were answered whenever they came up. The process was all really open, and was generally a really positive experience for me.”

"A scientist in me thought it might be quite cool to be a published result as well, so maybe that had something to do with my enthusiasm for it."

Max was very positive about taking part in the study and felt the “cool science” behind the study was a big factor for him to participate. Max was involved in the study for six months during the course of his chemotherapy treatment, where the microRNAs were measured in line with his routine blood tests for the currently-used markers.

After data from the study was analysed, the results were published in January 2016. Max was eager to learn about the results and was kept informed about the progress of the study along the way. Max explains:

“Very little was required from me for the study. The most important thing for me was to contribute in whatever way I could. Given that this research will save lives, I couldn't see a valid reason not to take part. I was involved in the whole process from start to finish and I enjoyed the whole process – but obviously not the cancer bit! I think being involved in research and in something that changes lives is a good thing to be part of."

"I loved seeing the results at the end of the study, and again the process was so open, so I really enjoyed being a part of research. The results did not affect me directly, as the biomarkers currently used were effective for my cancer also. However, the microRNAs did show a greater sensitivity to my relapse.”

The study showed that the test that had been developed was very good at detecting the type of cancer known as malignant Germ Cell Tumour (GCT) and was able to distinguish between different types of these tumours. The test also allows early detection of tumours and better monitoring of response to therapy which will improve the care of children and adults with malignant GCTs.

Four years on from Max’s diagnosis, and he has made great progress with his treatment for cancer, and remains extremely positive and enthusiastic about research into new and existing treatments. Through his cancer journey Max has since enrolled as a student at University College London, where he is studying for a Biomedical Sciences degree, a choice which has been inspired by his medical journey, sparking an interest in science and research. This interest has also enabled Max to help shape the future of teenage cancer research. Max explains more:

“I'm as close to 'cured' as a cancer patient can be. The surgery to remove my tumours after relapse removed the cancer as a whole, and so, four years on, I'm in the lowest risk band of relapse of my cancer."

“My role in research has progressed as I am also a patient representative for various groups like the National Institute for Health Research (NIHR) Clinical Research Network (CRN) Teenage and Young Adult Clinical Studies Group, the Paediatric Oncology Research Team (PORT), and the Innovation Agency's PIE senate in Liverpool. This is all based around my work as a member of the National Cancer research Institute (NCRI) consumer forum, a group of like-minded sufferers of cancer who wish to influence current research and give patients a voice in the debate. As part of this I sit on the Teenage and Young Adult/ Germ cell tumour clinical studies group, and influence the current work coming out of the field.”

Max is passionate about research and recently presented at the NIHR CRN Teenage and Young Adult Cancer Charity Summit in London, where a strategy is being developed in response to the government taskforce report to increase cancer research opportunities for teenagers and young adults by 2025.

The learning from this local study can now be applied to NIHR portfolio studies in germ cell tumours.

Read further details about the results of the study Max participated in.