A very blustery 48 miles this morning, with some friendly folk from Colchester Rovers. I’m starting to get that happy knackered feeling in my legs again, after two weeks off the bike.
Here’s the briefing on my condition I wrote for family and friends about a week after diagnosis. It’s mostly still true, except that the second and third opinions I got confirmed the tumour is inoperable.
So, at least I won’t be having brain surgery!
So, what is it?
It’s called a grade 2 (low grade) insular glioma, on the left hand side.It is cancer, they just don’t call it that when it is in the brain. It’s currently about 6cm x 4cm x 3cm. Low grade glioma is the type of tumour, insular is the location – basically, the folds of space deep inside the brain. Glioma’s are rated 1 – 4, where 1 only really occurs in children and is relatively benign, and 4 is malignant and aggressive. Progression from 1 to 4 is inevitable, the question is: at what pace?
Is there a cure?
While brain surgery can remove gliomas, and radiotherapy can reduce their size, they can never be got rid of completely, they always come back, and they always progress to stage 4.
So, what’s going to happen?
My understanding (though I’m not a neurosurgeon or an oncologist) is that there are essentially four stages to go through. The first and (hopefully) current stage is where the tumour is relatively dormant, with a slow growth rate. The second stage is when it turns malignant or aggressive, growing rapidly. We then attempt to do surgery and/or radiotherapy to stop it in its tracks. Stage three is when it (hopefully) goes back to dormant or slow growing again following surgery/radiotherapy. Stage four is when it again turns malignant and will inevitably end my life. The big problem is, there’s no predicting how long each stage might be. It could be months, it could be years, for each stage.
So, what about treatment?
The best course of action for gliomas is surgery followed by radiotherapy, in terms of extending life. However, the jury is completely out about whether surgery is best as soon as the tumour is discovered, or later when it turns malignant. My own consultant has a wait and see approach, others would be more interventionist. To add to the confusion, the particular location of my tumour makes surgery very tricky and pretty risky. Surgery is not an option to be entered into lightly, and it might not even be possible. Radiotherapy is a definite treatment with or without surgery, but it’s pretty unpleasant and the brain can only take one bash of it (six weeks of daily radioactive zapping). So, it is my ‘trump card’ to be used when most appropriate. My surgeon currently suggests waiting, and there seems to be no evidence that early vs later radiotherapy is more effective in the long run. Clearly I don’t want to use radiotherapy now, if I can use it to back up any surgery later on.
What’s the prognosis?
It would be great to get some accurate statistics, but it just doesn’t work that way. Consultants just say things like ‘every individual case is different’. My reading of the literature is that at minimum half of patients with my tumour are still alive 5 years after diagnosis (it depends on the exact kind of glioma I have, which they won’t know unless they open up my head). If I reach 10 years, I’ll be doing pretty well but it is possible. But once the tumour progresses to grade four, another full year would be lucky.
What about a second opinion?
Absolutely. I’ll be getting my medical records sent for second and third opinions about the wait-and-see approach, about the possibility and risks of surgery, and the most optimum time to do radiotherapy. I’m on a mission to gather as much information as possible, so our decisions are as informed as possible. It has been made very clear to us that while professionals will make recommendations, decisions on treatment are ours to make.
How will you know when it turns bad?
Either it’ll show up as growing and aggressive on an MRI scan, or my symptoms will get radically worse, indicating the change which can then be checked by an MRI scan.
What are those symptoms?
So far, I have had eight seizures – only while working at a high pulse rate while cycling (except for one, which was after a sauna – don’t ask). The seizure is like a stroke expanding from the right hand side of my face, and stretching to the whole of the right side of my body. A complete numbness and tingling, physical confusion, some involuntary movement and inability to speak/garbled speech. I also have occasional deja-vu and a metallic taste. Day to day, I’m having very momentary mental ‘delays’ (a bit like an internet movie buffering when your connection isn’t quick enough) and a metallic taste.
As the tumour progresses, these symptoms will get worse (it’s all down to which parts of the brain the tumour is pressing on). As I understand it, the seizures will turn to full blown fits and blackouts. I’ve been prescribed anti-convulsant drugs to control the seizures, and the dose will be increased in line with their severity. Considering I’ve only ever had a seizure so far when working hard on the bike, I’m hoping I have a long way to go. However, I won’t be allowed to drive again unless I am seizure-free for a year.
What happens in the immediate future?
I’m due an MRI scan in three months time. That’ll give the consultant a second picture of the tumour, showing whether it is growing, at what rate, and if it is taking up blood. If it is dormant, they’ll say come back in six months for another scan. If it has turned malignant I have a biopsy (which brings its own risks) and then we start treatment. Unless any second opinion I get suggests an alternative strategy.
How did all this start?
I’ve had a broken molar tooth for a number of years, and the first seizure happened – while I was cycling – after I’d hit that broken tooth with a stream of water from my water bottle. I assumed I’d hit an exposed nerve in the tooth and I recovered after a few minutes and thought no more about it. A few months later, I had another seizure on the bike and thought: I really must get that tooth fixed. After the third and fourth time, I did get the tooth taken out and again thought no more about it. Until I had a quite severe seizure on the bike about a month later. I saw the doctor the next day, who referred me to a stroke specialist. He said I hadn’t had a stroke, but sent me for an MRI scan (as well as other tests). The MRI scan finally showed a) it wasn’t toothache, b) I’m an idiot.
The consultant says the tumour has been there at least a year. The reason it produces seizures when I’m exercising is because blood leaves the brain to power my cycling legs and heart, so there’s less left to power my brain’s normal function. With the tumour taking its own share of blood, there’s even less left to allow my brain to work properly.
So, the end of your cycling career?
Not a bit of it. First, the anti-convulsant drugs should stop the seizures. Second, I’m supposed to keep fit and healthy. Worth noting, the seizures are a side-effect of the tumour, they’re not the tumour itself. The consultant says there’s no reason why, once the drugs have kicked in properly, I can’t be racing my bike again. For now, I’ll plod around and do long miles.
What are your immediate plans?
Retire! Well, for six months anyway. I’m taking six months off work to be with my family, go to the beach, go on holiday, go cycling, just in case that’s all I’ve got left. If everything is good in six month’s time, then I guess it’s back to work.
What can we do?
Aside from running the marathon wearing a t-shirt with my face on it? Just let us both know you are there. A text, an email. We would both appreciate knowing people are out there thinking of us and our children, and are willing to spring into action should we call ‘help!’ There will be plenty of time for more intense support when things go pear shaped (hopefully) much further down the line. For now, I’d love to see as many people as possible over the coming months – mainly because it takes something like this to remind you that you really ought to catch up with your friends more often!
Just in case you’re tempted to trawl the talk boards, here’s some more credible sources of information…
(yes, this last one is a charity 100% dedicated to the very particular tumour I have… how’s that for charity sector efficiency?)