Being diagnosed with a brain tumour at the age of 12 had life-changing effects on Emma Hall – but it also inspired her to become a cancer researcher and a Young Ambassador for The Brain Tumour Charity.
Emma, now 26, is currently working on her PhD at the Cancer Research UK National Biomarker Centre, as well as volunteering for the Brain Tumour Charity. “There’s nothing else I’m as passionate about,” she said. “I want to do something to help drive improvements for brain tumour patients.”
It’s a far cry from her worst times a few years ago when her growing recurrent craniopharyngioma led to multiple gruelling rounds of surgery in five months at Salford Royal and complications including pneumonia and a severe allergic reaction to an antibiotic she had been given.
Emma’s brain tumour journey began at the age of eight though it wasn’t realised at the time. She had been suffering severe headaches but after a few weeks, the symptoms died down. It wasn’t until a few years later that she was referred to the Royal Manchester Children’s Hospital due to her parents’ concerns about her lack of growth.
This led to her diagnosis with a craniopharyngioma, a type of tumour that usually forms at the base of the brain near the pituitary gland and has a large impact on hormone levels. The tumour was very high risk for surgical removal and so she had a brain tumour biopsy operation and then radiotherapy at the Christie which halted the growth of the tumour. Emma then began taking daily growth hormone injections to help her gradually get back within the normal height range.
The tumour remained stable for the next seven years until Emma’s first year of studying Biosciences at Durham University, where she started having seizures that would cause her to lose her speech and the feeling on one side of her body.
Specialists at the Christie NHS Foundation Trust then discovered that her tumour had grown considerably in the 12 months since her previous scan with severe compression of critical structures and swelling in the brain. The tumour was wrapped around her optic nerves, the major blood vessels at the base of the brain, her hypothalamus and the ventricles of her brain causing a build-up of water (hydrocephalus). Further radiotherapy was no longer an option, and multidisciplinary opinions were sought for what was now a very complex and high-risk tumour, which was threatening Emma’s life. Emma was referred for urgent expanded endonasal endoscopic brain surgery at Salford Royal under Consultant Neurosurgeon Professor Omar Pathmanaban and Mr Raj Bhalla, Consultant ENT Surgeon and Rhinologist.
Despite the initial 12-hour operation being successful in completely removing the tumour, she had major delayed complications following the failure of the graft used to repair the site of surgery as a result of wound healing problems from the previous radiotherapy combined with hydrocephalus. This became a recurring problem, which meant several further operations and in between these, she developed infections and needed strong antimicrobials and cerebrospinal fluid drainage.
The infection and water build up in Emma’s brain, combined with her limited mobility took a toll. “My physical and mental capacity went through the floor,” she explained. “It was very worrying for my parents.”
Eventually, Emma was discharged to continue her recovery at her home in Saddleworth. “I was desperate to get back to my normal life, but the rehabilitation process took time and adapting to my new norms was really hard.”
But her determination saw her return to full-time study, and she graduated with a first class degree during the pandemic and then went on to complete her MRes in oncology at the University of Manchester, working with Professor Marianne Aznar, Dr Gerben Borst and Dr Mueez Waqar.
That saw her personal story syncing with her professional life as Dr Waqar – a neurosurgical trainee and PhD student at the time - had been a member of the team caring for Emma during her surgeries at Salford Royal and she ended up contributing to and being named as a co-author on his systematic review and meta-analysis on rapid early progression of glioblastoma.
Emma has now embarked on her PhD studies at The University of Manchester on a project investigating the potential use of liquid biopsy techniques for the detection and monitoring of gliomas. Her work is based at Cancer Research UK National Biomarker Centre, headed by Professor Caroline Dive, where she is supervised by a team of researchers including Dr Florent Mouliere and Dr Alex Clipson in the Nucleic Acid Biomarkers Team, along with Professor Petra Hamerlik from The University of Manchester’s Division of Cancer Sciences.
“Despite all the bumps in the road, I consider myself lucky to have got ‘me’ back I will always be so grateful for Omar and the rest of the team; I couldn’t have been where I am without them.”
Emma is also part way through a two-year stint as a young ambassador for the Brain Tumour Charity after finding the charity’s support invaluable during her own recovery, when she really wanted to be with others who’d had similar experiences.
“Becoming involved with The Brain Tumour Charity was a gamechanger for me. During my recovery I felt very low and isolated, and it really helped to interact with others who truly understood what I was going through. It’s awful that many young people can’t fully recover – it seems so unfair that people so young should have these outcomes.
“I want to give something back by helping to drive positive change and raise awareness. So many people don’t know the symptoms of brain tumours – raising awareness is critical for gaining a wider knowledge of the signs and symptoms of brain tumours. We need to help people to understand that benign is not fine and that lower grade tumours can still be life-threatening. It is also important for scientists to be made aware of lived patient experiences to help drive research centred around the needs of patients. I have shared my journey as a brain tumour patient at conferences and sit on patient advisory boards to facilitate that”.
Emma’s surgeon Prof Omar Pathmanaban is strategic lead at the Geoffrey Jefferson Brain Research Centre, a partnership between the Manchester Centre for Clinical Neurosciences at Salford Royal (part of Northern Care Alliance NHS Foundation Trust), The University of Manchester and the Manchester Academic Health Science Centre. He says her story shows how important the strong links between different NHS organisations and academic institutions in the region are – as well as the need for further research.
Prof Pathmanaban said: “Emma has been through some very tough times and all the team who contributed to her care are delighted to see her doing so incredibly well now. We are especially happy she is now a colleague working in brain tumour research and inspiring others through her work, as well as through her role in the Brain Tumour Charity. Every step forward to improve treatment for people like Emma comes though collaboration and teamwork. I’m proud that Manchester is playing such a leading role in brain tumour research that has the potential to save and improve lives.”