In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Father-of-two Neil Danziger, of Queen’s Park, London, thought he may have had a blood blockage when he first started seeking help for his symptoms, which included light-headedness and phantom smells. Owing to the location and size of his tumour, Neil was able to have it surgically removed. Although initially identified as a low-grade pilocytic astrocytoma, the surrounding cells showed a mutated gene more commonly found in high-grade diffuse midline gliomas, leading doctors to recommend a more aggressive treatment. Now approaching his final chemotherapy cycle, Neil is preparing to take part in a charity walk for Brain Tumour Research.
Neil tells his story…
Since early December 2020 I’d been having lightheaded moments. Often if I’d been doing something I’d need to sit down, and it was followed by a strong sense of smell.
“I’d smell something that clearly wasn’t there, lasting for about 10 seconds or so.”
I’d had high blood pressure and high cholesterol in the past and my grandfather died of a heart attack at 60 so I decided to get checked out. They did blood tests and a scan where they put dye in the body to check there are no blockages or narrowing of the veins, and the next day they called and said ‘there’s nothing seriously wrong with any of your bloods but when we followed them through your body we found a small lesion on your temporal lobe’.
I’d been more concerned I might have had some kind of blood blockage that would lead to a heart attack or stroke and that’s what set me off to get checked out, so when I found out I had a brain tumour it was a shock. I felt surprised but ready for battle – my game face came out. I felt as optimistic as I possibly could because it was so small, only 1cm.
“I’d heard of people having plum or apple-sized tumours and I had a pea. So, I thought ‘I have a pea, I can do this’.”
I went to see a neurologist and he looked at the scans and said ‘that’s where it is’. He didn’t know exactly what it was but he wanted to take it out on 8 February and explained how he was going to do it. They couldn’t say how long it had been there but it hadn’t grown from the time of my first scan to the day before surgery, so that was promising.
I think it was a Monday morning that I checked myself into The Wellington Hospital in north London and, at lunchtime, off I went for brain surgery. As far as they could tell, they had got it all. Everything went pretty well and they were happy with my recovery. The next day I was feeling ok but a bit sore on the side of my head, where they’d operated.
A biopsy of my tumour was sent off to pathology and came back as a possible pilocytic astrocytoma, but low-grade. However, the cells around it came back showing a mutated gene which is more common in aggressive high-grade diffuse midline gliomas, or DIPG, more commonly found in the young.
“That it is in my 46-year-old brain and in the wrong place has left the medical team surprised.”
After surgery, I was sent to oncology to start treatment because the cells they found, while they could have been dormant, could also have been aggressive. The London Clinic, in central London, treated it as a fairly aggressive tumour with six weeks of radiotherapy and chemotherapy. Then, when that finished, at the end of April I started six cycles of chemo which involved five days of pills followed by a 23-day break and then the cycle starts again. I’ll start my final round on 28 September and then they’ll do a scan and decide what’s next.
“In a couple of weeks I’ll have an idea of what’s still inside my head, hopefully nothing sinister.”
I’m fortunate that my kids are too young to understand what’s going on, Henry’s six and Millie’s only three. I think it’s been hardest on my wife, Victoria, though. As the person going through it, I have the ability to manage my own mind and I’m just doing what I need to do to solve my problem until someone tells me differently. I feel like if I go back to having the feelings I did before then I’ll know what it is because I know what to expect. Either way I can’t worry too much about what’s going to happen, all I can do is deal with it as it does.
I was born in South Africa but my parents, both doctors, emigrated to England to escape apartheid. My mum had breast cancer around 14 years ago and is still all clear and my father passed away during the pandemic but had previously had kidney cancer, which spread to his brain as a secondary cancer in 1997.
“I’m obviously from strong stock and can’t help feeling that if my dad had a brain tumour at 65 and beat it then I have a good chance of beating it too.”
Gentle exercise is good for the mind and the body so getting out and going for a walk is great for me, I find it calming. With this in mind, on Saturday 25 September I’ll be taking part in a Walk of Hope to raise funds for Brain Tumour Research. It’s a half marathon parks challenge, so will involve walking around Hyde Park twice, then on to Regent’s Park, finishing on top of Primrose Hill, and I expect it to take up to five hours to complete.
I’ll be joined by several very good friends of mine who used to drive me to my radiotherapy sessions and then walk around Regent’s Park with me after, and a few others who have expressed an interest in meeting up along the way. I’ve set up a fundraising page and am delighted to see it’s already made almost £12,000. Now I’m determined to push it to reach £15,000.
“I hope it’s something that will be life-changing and will help make a difference for everyone going forward who has what I have.”
We need better treatments and more studies into it. What Brain Tumour Research does is amazing, in trying to find a way to reduce future caseloads, and every penny counts.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.