Simrat’s story
On 16 November 2022, Simrat Dev woke up in pain – yet again – but this time it was “indescribable”.
As her symptoms had been increasing in frequency and severity for several months, the 22-year-old from Hounslow in west London went to hospital and persuaded doctors that she needed a scan to find out what was going on.
Within an hour of the scan, she was told there was something on her brain and doctors weren’t sure what it was.
Simrat explained: “At 8pm I was transferred to Charing Cross Hospital and was told I needed surgery that night. However, the MRI wasn’t ready, so I had to wait until the next morning.
“I had surgery the next day and was told two weeks later that it was a rare and aggressive cancer, and then a further fortnight later, they came back with the classification. The hospital said this was the only case they had ever seen. It was an astroblastoma.”
According to clinical specialists, an astroblastoma is an extremely rare type of glioma that shares features of both astrocytoma and ependymoma. It makes up less than three per cent of all neuroglial tumours and it is usually found in the cerebral hemispheres of children, teenagers, and young adults.
… they came back with the classification. The hospital said this was the only case they had ever seen. It was an astroblastoma.”
Simrat Dev
Processing diagnosis
Simrat, who was diagnosed on 1 December 2022, said that she didn’t really have time to process what was going on as it happened so quickly – which was good.
She added: “With it being brain surgery, I think if they had scheduled it for the week after I would have been much more terrified going in, but because they were initially going to do it that evening, I didn’t have a choice and I just accepted it. Then I stayed in hospital for a few days where the surgeons reassured me it looked benign but evidently this was such a rare tumour, they hadn’t seen it before.
“After I was diagnosed, I got a call on the 2nd December asking me to come in for a discussion about fertility procedures. They wanted to get started right away but because it was all super overwhelming, they gave me the weekend to think about it.
“I did go through with in the end and had the egg removal procedure on December 19 and then on December 29 I started radiotherapy and chemotherapy. Chemo was for seven days, and radiotherapy was every weekday until 13 of February. Then I had a break and from March onwards. It was three weeks off and one week on chemo for 12 rounds.”
Bouncing back and remission
“I have since had scans every three months with one hiccup the last time showing a brighter spot but that has since reduced. Now I’m doing well, outside of chemo weeks. It’s just the week of/weekend after chemo where I’m unwell and fatigued, but I bounce back quite quickly!”
Simrat has now finished treatment and in March 2024, she was given the amazing news that she’s in remission. So she’s having regular scans to keep an eye on things. She’s also interested in the possibility of a paper being written about her case, as it’s so rare and tricky to treat.
In September, she’s due to start her Masters degree after putting it on hold for a year while she had treatment. Good luck Simrat!
Find out more about you can help us support anyone affected by a brain tumour diagnosis here: