Felix, an A&E doctor from Clapham, South West London, was diagnosed with a grade 2 astrocytoma following a biopsy in April, which left him with double vision, tinnitus and right-sided numbness. His tumour was monitored with surveillance MRI scans throughout 2022 after investigations for left-sided numbness, thought to have been unrelated to his tumour, led to its discovery. The 34-year-old is now two-thirds of the way through a six-week course of radiotherapy and is due to start chemotherapy in August.
Felix tells his story …
Before my diagnosis, I was very active and played a lot of sport. I was going to music festivals, working full-time as an A&E doctor and was generally pretty busy. My wife and I were holidaying abroad quite a lot and were looking forward to starting a family, although that wasn’t quite on the horizon at that point.
In December 2021, I noticed a change in sensation in the left side of my trunk, from my nipple to my groin. I didn’t realise what it was at first. I had a bit of discomfort around where my belt sat on that side and, as I’d been playing cricket, thought I’d just strained my groin.
“I had that change in sensation for about two weeks, but it took me at least a week to realise it was something neurological rather than muscular.”
I have a family history of multiple sclerosis (MS), with my mum’s sister having had it and a few other more distant relatives. Neurological changes can be an early sign of MS so I was a bit worried it might be something like that. I arranged a GP appointment but it was the backend of COVID-19, so I couldn’t get one for two weeks.
Fortunately, I managed to get an appointment at the rapid access neurological clinic at St Thomas’ Hospital, London, before I was due to attend my initial GP appointment. There they agreed my symptoms were being caused by something neurological and did an MRI of my brain and spine. That scan did show my tumour but the way it was requested, asking for signs of MS or any other reason for my symptoms, meant it was reported back in those terms.
“It said I showed no signs of MS and, in the small print, noted a lesion in my cerebellum which could be a low-grade glioma.”
I was relieved I didn’t have MS, but then a couple of weeks later I got a call from the neurosurgical team based at King’s College Hospital, wanting to follow up on the lesion that was found. Everything just sort of spiralled from there. Initially, from the scans, there was some uncertainty about what the lesion was and, as there was no definitive diagnosis, they said ‘let’s just monitor it and see if it changes’. I therefore had a scan in January 2022 and at various intervals throughout the year and then another in January of this year.
It was rather annoying actually because after that first scan this year they phoned and said ‘no change, all’s normal, we’ll see you in a year’. I thought that was brilliant news, but then I got a call a couple of weeks later to tell me they’d looked at my scan again and it had in fact changed. Apparently they had only compared it to my most recent scan, but comparing it to my previous five revealed small changes over time, which was pretty disappointing.
As a result of the changes, it was recommended I had a biopsy to determine exactly what type of tumour I had. This went ahead at King’s on 19 April and I spent one night in hospital after. I had a needle biopsy, which is less invasive than an open biopsy and means the risks of sustaining any long-term neurological damage are much lower.
“Sadly, when I came around from the anaesthetic, I had double vision, mainly when I looked to the left or down, some right-sided numbness and some tinnitus in my right ear.”
My vision is pretty much back to normal now but the tinnitus and sensory changes remain almost the same. The place they took my biopsy from is quite a complex area of the brain, near the brain stem, and it’s likely they disrupted the pathways that signal to those things. Frustratingly, every patient’s recovery is different, so I don’t know if they will get better. However, the vision was the most difficult to manage and I’m pleased to say that’s improved the most.
I went to see an ophthalmologist and they were able to pinpoint why I had the double vision, which meant they were able to give me a prism lens to attach to the outside of my glasses. Having that has made it a lot more manageable, but not being able to drive has been a big adjustment.
“My right-sided numbness is weird because when I have a bath or shower I get a completely different sensation on one side of my body.”
The nerves that transfer different senses have individual pathways and those of mine that control sensation and temperature have been disrupted. This means my appreciation of temperature on my right side has also been significantly reduced. A couple of times I’ve grabbed a hot pan from the hob or a hot dish from the microwave and got a weird painful sensation unlike anything I’ve felt previously. Unfortunately, my right hand is also my dominant one, so I do tend to lead with that and, as it’s quite a subtle feeling, I tend to forget until it’s too late.
The tinnitus has maybe slightly improved, but it’s hard to be sure as I may just have got used to it. I went to see an audiologist who performed a hearing test and, although the hearing on my right side is reduced compared to my left, it still sits within the normal range. At the beginning, I would have predicted it was around 75% reduced but I think this was probably the effect of the tinnitus on top.
“I do find myself trying to stand with my left side to people and it’s annoying being a passenger in a car because that’s not possible.”
I thought I’d have a period of time before treatment started where it would be nice to go and do things, but then I found myself quite affected by these symptoms which, although frustrating, have improved over time. Having got my preliminary biopsy results about two weeks later, I saw a neurosurgeon at King’s who said he didn’t want to operate because my tumour’s location would make it difficult without causing lifechanging neurological deficits.
“I got second opinions from University College London Hospital (UCLH) and St George’s Hospital, where the surgeons agreed they wouldn’t want to operate.”
It was nice to have that consensus of opinion because I think of the three at the King’s multidisciplinary team (MDT) meeting, two said they wouldn’t operate and one said they would. After that it was onto oncology where I was told the plan was to do 30 sessions of radiotherapy followed by 12 months of chemotherapy with a month off in between.
I started radiotherapy at Guy’s on 22 May and am about two thirds of the way through that now, having tolerated it better than I thought I would. I’m part of a brain tumour support group on Facebook, which is an interesting resource, and, based on other people’s experiences, I thought it would be worse than it is. Of course it’s possible it just hasn’t hit me yet. I felt more tired early on, but since the first week or so, that’s been better. I have about a two-hour round trip from Clapham to Guy’s but the treatment only takes around five or 10 minutes.
“I usually stay for up to 30 minutes after because the mask puts a bit of pressure on my eyelids and I tend to get a bit of blurred vision, which disappears after about 20 minutes or so.”
I'm due to start chemo at the beginning of August. In my case, it will involve taking tablets rather than infusions, 12 cycles of five days on and 23 days off. Chemo, like radiotherapy, is tolerated differently by different people and so, having read a bit about it, it feels like there’s no point in having too many preconceptions of what it’ll be like. When you look at the side effects, it can basically cause anything and everything, so I’ve decided there’s not really any point in stressing about it ahead of time. In any case, I suspect the effects are cumulative and will get worse over time.
I’m currently looking forward to having a holiday with my wife and son and I enjoyed surprising my brother-in-law, James Gilmour, at the end of a 205-mile cycle challenge he did last weekend. I was really touched when he told me he was riding Chase the Sun in aid of Brain Tumour Research because of me. The amount of money he’s been able to raise, which is in excess of £9,450, is amazing. Anyone wishing to add to his fundraising, can do so at www.gofundme.com/f/vt2p3h-brain-tumour-research.
Felix Gooding
June 2023
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.
If you have been inspired by Felix's story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
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