March 30, 2022
Brain Tumors, My Aunt and Hats in Spring
Life Sciences ExpertGuest
One day she woke up and she was blind in the left eye. Earlier that month, she had noticed some blurry vision and that her long-distance vision was going. I guess she thought it was old age. There had been no pain, no other symptoms. She was my Aunt Lena, a healthy Portuguese woman in her mid-60s, enjoying retirement. It took four months for doctors to diagnose her with grade 4 gliosarcoma, a rare type of brain cancer.
In the UK, March is National Brain Tumor Awareness Month, culminating with “Wear A Hat Day” on the 25th, with plenty of fundraising activities scheduled and people encouraged to wear a hat at school, work or home to highlight the disease and raise funds to help find a cure. In the US, over 18,000 deaths in 2021 were estimated to be due to brain cancer and other nervous system cancers. There, May is Brain Cancer Awareness Month.
Wherever you are in the world, brain tumors and cancers will exist in the population. And like most cancers, all too often people prefer not to talk about it. I want to pay tribute to my Aunt Lena by sharing her story...
Aunt Lena stayed in her local hospital pretty much the whole time for those four months ahead of her diagnosis, while tests and biopsies were done, with visits to specialist hospital units for certain exams. I remember her saying, “Oh God, please just let it not be brain cancer.” I remember her telling me about all the new clothes she had just bought for the winter season, wondering whether she would now wear them. I remember months after her death, when the family was going through her belongings to divvy them up, seeing beautiful jewelry I’d never seen her wear. I’m not one for “what ifs”, but events like this certainly encourage me further to live in the moment – you never know what’s round the corner.
Her prognosis was bleak. She stayed at my parents’ place and friends would visit often to cheer her up. A friend was over for tea one afternoon a month or so into her stay. My mom – a retired oncology nurse – spotted something was not right. “Your sister is not well, we need to take her to hospital now,” she told my dad. That was the beginning of the end. Within a few hours, Aunt Lena had fallen in what I can only describe as a natural coma – as if she had fallen asleep but wouldn’t wake up. She remained like that for about two weeks, breathing on her own and not connected to any machine, after which she passed. I flew back during that fortnight to visit her in hospital. I squeezed her hand and spoke with her. No response. I wonder whether, in a Hitchcock way, she could hear me – just not externally react to it. I hope she did hear me and all the family and that it gave her some comfort.
What can we do about cancer? In a way, little to nothing. Which, for a problem solver like me, is frustrating to hear. TV adverts make the point that one in two people (in the UK – where I’m based) will be diagnosed with cancer in their lifetime. But not all are life threatening and more and more treatments and cures are being discovered.
This is where our industry comes in. If there’s a positive to take from the pandemic it is that pharma companies and regulators can work together to bring medicines and treatments to market more quickly whilst still ensuring safety – and potentially saving more lives. I wonder too whether personalized medicine can play a bigger role in treatment success going forward. Oncology clinical trials for rare cancers and diseases are particularly hard, but that’s where decentralized and hybrid trials can reach more of the right patients with the help of technology vendors.
At the human level, brain cancer is a devastating disease, for the patient and all their loved ones. If I could ask a favor of you, it would be to take a moment today to reflect about this deadly disease and how our industry’s work in clinical trial research might help the fight. Or perhaps do so when you next wear a hat. After all, March marks the arrival of spring – and you may need one with all that lovely sunshine.
Life Sciences ExpertGuest
Sonia is an energetic cross-functional leader, renowned for creating empowered teams, converting corporate vision into product strategy and providing clear product direction.
She is passionate about excellence and delivering value for global companies, their clients and users, converting data insights into product success.