01-05-2025
The subtle symptom that led me to tragically discover a 'one in a million' tumour - and now I have a broken brain
Jamila Rizvi thought her missed periods were just a sign of stress.
After noticing she hadn't menstruated for two months, the Aussie TV presenter decided to see a GP as a precaution to check her hormones, as she had just stopped breastfeeding her toddler son Rafi.
But the then-31-year-old's world came crashing down when she was diagnosed with craniopharyngioma, a rare 'one-in-a-million' brain tumour.
'For me, it was very much out of the blue... I was very unexpectedly diagnosed with a rare kind of brain tumour so I've got a physically broken brain,' Jamila told radio duo Carrie Bickmore and Tommy Little on HIT Network.
'Because of where the tumour grows and the complexity of the brain, for me it began with hormones so I just skipped a period.'
Reflecting on that fateful day seven years ago, the political commentator was on a book tour, so she suspected the missed cycle was simply due to stress.
'I thought, oh I must be really stressed,' she recalled.
'And then it happened again and so I was very diligent, went and saw my GP and I think that's when I got lucky the first time because my GP took me really seriously... I got blood tests done, she sent me off to specialists and then a gynaecologist.'
In 2017, doctors found a tumour lodged deep in her brain, dangerously close to her optic nerves, hypothalamus, and pituitary gland.
'It's quite an unusual type of brain tumour, it happens to about one in every one-and-a-half million people,' she explained.
'You're born with it but you wouldn't be able to see it on an MRI - it's a tiny cluster of cells with that extra bit of DNA I shouldn't have.
'The growth started to grow in my late 20s.'
Despite undergoing two major brain surgeries followed by radiation, Jamila now lives with chronic health conditions, as she's told her tumour may return.
Whenever she bumps into an old friend or acquaintance, one of the most frequently asked questions she faces is, 'Are you better now?'
'It's asked with the best intentions,' Jamila explained.
'They really want me to say, "Yeah I'm all fixed, I've come through the darkness of the brain tumours, surgeries, radiations and treatments, and now I'm fixed." But I'm not.
'The reality is that when people cut open your head multiple times, there's damage that has to be done.
'Brain injuries are quite significant and they're not going to be fixed in my lifetime. For me, I'm not going to be fixed.'
Reflecting on that fateful day seven years ago, Jamila noticed her period was late but suspected the missed cycle was simply due to stress as she was on a book tour at the time
But in 2018, Jamila told Stellar magazine she had purchased a pregnancy test after assuming she was pregnant with a second child.
'I didn't have a baby growing in my belly. I had a tumour growing in my brain,' she told the publication at the time.
The mum explained that she had experienced no other symptoms except for missed periods.
Before her shock diagnosis, Jamila said her GP had suspected her period was being affected by stress - but she was sent to get an ultrasound and blood tests.
'This was the first of several decisions that may have saved my life and almost certainly helped preserve my eyesight and fertility,' Jamila added.
The then 31-year-old in hospital with her toddler son Rafi and husband Jeremy
Before she discovered she had a brain tumour, Jamila said she did what any young person would do - Googled her symptoms.
'You're not supposed to Google your symptoms because the internet says everything is either stomach cancer or a brain tumour,' she said at the time.
'Turns out, sometimes Google gets it right.'
At the time, the mother said she was struggling to come to terms with the news.
'Fortunately the tumour is benign and operable,' she said.
'I'm not in any pain. This is not and will not affect me cognitively. I'm writing, speaking and working as normal and that's how I intend to continue.'
