In late 2023, Leonie began waking suddenly during the night, inexplicably sensing an intense smell of greasy food. Four days before Christmas 2023, she had several partial seizures along with temporary loss of speech and more abnormal smells. This led to the diagnosis of an incurable brain tumour.
Leonie works as a Consultant Clinical Oncologist and, when she had the seizures, she was sent from her clinic to the medical team for investigation. As a specialist in cancer care, Leonie had a suspicion that her symptoms could be caused by a tumour.
Following an MRI scan and CT scan, Leonie was seen by a colleague back on the ward, and the news was broken to her and her husband that she had a brain tumour. Leonie is used to communicating difficult news to others but, on receiving this information herself, she described feeling “initially numb as if the news of a tumour was untrue or not aimed at me”.
The news was such a shock that Leonie had several short seizures during the night in hospital. She described how breaking the news to family, friends and colleagues was the hardest part of the process initially, due to the continuous recap of difficult information and watching people she cares about get visibly upset.
Since her diagnosis, Leonie has undergone surgery, radiotherapy and chemotherapy. She was kept awake for part of her surgery, a procedure called an awake craniotomy. This involves the patient being asked to perform certain tasks during the operation, such as speaking and raising a hand, to help avoid damage to these functions. Surgeons were able to safely remove just under 50% of the tumour.
Even with her medical knowledge, and a good understanding of the life-saving benefits of this surgery, Leonie describes it as “an incredibly scary experience” to have someone operating on her brain whilst she was awake.
Since her treatment Leonie has had sepsis, a life-threatening condition where the body has an extreme reaction to infection. She has also experienced hair loss, significant fatigue and has had to re-learn to read, write and speak properly again. Her driving licence is medically rescinded, so she has had to move house to allow access to work and be within walking distance of shops and other amenities. Despite all of this, her loved ones have helped her stay strong.
As someone who herself treats people with cancer, Leonie understands the huge importance of research, not only in moving us closer to a cure but also in reducing side-effects of treatment.
“I support this charity because I believe that research holds the key to better outcomes for people with a brain condition like mine. Whilst my life has changed, I am making the most of every moment”.
Her desire to drive up funding for neurological research motivated Leonie to run the 2025 London Marathon as part of the Brain Research UK team. Running alongside the doctor who delivered her diagnosis, she completed the iconic race and raised more than £35,000 in the process! She has since raised further funds by hosting a fabulous gala ball.
Brain tumours kill more people under 40 than any other cancer, yet research investment has been far lower than for other cancers. As a result, there has not been the same progress in treatment and survival.
We have made brain tumours a research priority to help address this. Since 2017, thanks to our incredible supporters, we have invested £4.6 million in vital research that is helping us to understand brain tumours, how they develop, and how we can better diagnose and treat them.
We funded vital research by neurosurgeon Ryan Mathew, who brought together a team of neurosurgeons and biologists to tackle the problem of cancer recurrence. Treatment for malignant brain tumours often fails because cancer cells remain in the brain after surgery. These cells resist being killed by radiation and chemotherapy and ultimately give rise to new tumours. By advancing knowledge of the cancer cells in this so-called ‘margin zone’, we hope their work will enable the development of treatments that can effectively eliminate these cells and reduce the risk of the tumour recurring.
If you’re inspired by Leonie’s story, please consider making a donation to support our work, or look for ideas for other ways in which you could get involved.
