A little knowledge

If you have a brain tumour or cancer and are avoiding knowing too much about it, you may wish to stop reading now.

Because knowledge isn’t always a good thing.

Indeed, isn’t there an age old assumption that doctors only tell patients what they need to hear? They hold back difficult truths from patients, it goes, because: well what good would it do to share them?

Since my diagnosis, I’ve been on a mission to find out as much as I can about my condition. I want to know everything about my epilepsy and tumour, the life changes I can expect, the biology, the drugs, the chemistry, the physiology. The lot.

But part of the bargain is the inevitability of learning things you realise – in hindsight – you probably didn’t want to know.

It’s like prodding that wobbly tooth or finding out too much about your partner’s previous lovers: you know you shouldn’t, you know it’s going to hurt, but somehow you just can’t help but do it.

Over the last few months, thanks to the great work of the Brain Tumour Charity, I’ve been learning a lot.

I’ve attended two brain cancer research laboratories, a patient’s information day and an academic lecture on brain tumours and their future treatment. If you’ll excuse the phrase, my head is full.

I’ve come away empowered, but disturbed by what I’ve learned. I’m more knowledgeable, but at the same time more unsettled.

Scientists, I’ve learned, are pioneering a new surgical technique for removing brain tumours. The patient downs a ‘pink drink’ before they go under the knife. That drink – which is actually clear – makes the tumour glow pink under ultra-violet light.

It allows surgeons to see more clearly what is healthy brain tissue, and what is tumour. It allows them to remove more of the glowing bad tissue from the brain, without damaging the non-glowing good stuff.

Only things are never so simple. Where the pink drink has revealed more, it has also revealed too much.

I’ve seen pictures of a brain after surgery which – under normal light – looks entirely free of tumour. Normally, the brain surgeon would have left it there; congratulating themselves for a cancer successfully removed. A job well done.

But switch on the ultra-violet and the extent of the cancer’s invasion becomes apparent. Thousands of malignant cells left behind, glowing pink among the other tissue, obnoxiously persisting as the surgeon peels back layer upon layer of what was thought to be healthy brain.

Each pink glow is a potential new tumour, waiting patiently for its chance to grow as soon as the patient has been sewn up.

I’ve also learned that cancer works on a survival of the fittest basis. That’s great news for cancer and bad news for those of us with it.

Tumours grow when a cell’s genetic code goes wrong: in short, cell multiplication just doesn’t turn off when it should. One cancer cell then turns into tens, then hundreds, then thousands, then millions, then many millions of cancer cells. It creates a tumour, and sometimes sends out satellite tumours into the blood stream, the lymphatic system and around the body.

That’s bad enough, but here’s the knowledge you really don’t want to know.

Each of those cancer cells themselves have the potential to mutate. If the genetic code of just one of those already cancerous cells mutates into something resistant to a chemotherapy drug, that cell could survive chemo treatment to produce yet more resistant clones of itself, in turn producing yet more cancer resistant to the drugs that were supposed to kill it off.

This explains in part why cancer often returns, and why oncologists try to hit cancers from lots of angles at the same time: surgery, radiotheraphy, multiple chemotherapy. It explains why a cure for cancer remains so elusive – it is a disease of cell division and multiplication – while other global killers have been taken under control.

(It also explains why eating seaweed or apricot kernels, or whatever else the new age nutritionists would have you eat, isn’t going to cure your cancer.)

For my own particular brain tumour, I’ve learned more difficult things.

I’ve learned that my type of tumour – a low grade glioma – is actually very rare. I’d imagined there were thousands of us at the bottom of a brain tumour pyramid, supporting fewer of those with progressively worse brain tumours in the layers above.

It’s not like that. It’s far rarer to have a low grade glioma than the most deadly forms of brain cancer. In that sense, at least, I’m one of the lucky ones.

But I’ve also learned that despite it’s apparent benignity, as brain tumours go, the survival rate for low grade gliomas is worse than many of the most malignant types of breast cancers. Given the high profile of breast cancer, that knowledge can’t help but bring this ‘lucky’ brain tumour patient down earth with a bump.

But here’s the knowledge – or lack of it – that is really messing with me just now.

Most low grade gliomas, I’ve learned over the last month, fall into two genetic categories. If, in genetic speak, my tumour carries the IDH genetic mutation, then my survival chances are significantly better than if it is ‘wildtype’, that is not carrying the IDH mutation.

I can only find out if my tumour is IDH mutated (or not) by having a biopsy: a drill through my skull, followed by a needle poked into the tumour to draw out some tissue.

Being IDH mutated (which is most likely) will make my life expectancy longer than being ‘wildtype’, yet knowing whether I’m IDH mutated or not won’t change a thing.

So, biopsy or not?

Until I knew about the IDH genetic marker, I’d always concurred with my doctor’s advice that we should not do a biopsy now because of the risks involved. Why try to fix something until it really is knackered?

But now I know too much. Even though it won’t make the slightest difference knowing whether I’m IDH mutated or not, I can’t help but wonder. I can’t help but prod that wobbly tooth. I can’t help but want inside that private diary. Even if the knowing it will do me no good at all.

I’m in no rush. I’m not sure. I need to find out more.

I need more knowledge to help me decide.


On a lighter note, my health has improved considerably over recent weeks.

Whether due to the further increase in my main epilepsy drug, or the further bedding in of my don’t-stay-on-too-long (but I still seem to be on it) extra epilepsy drug, I don’t know.

Anyway, I have enjoyed a dramatic drop in the number of seizures I’ve been having.

I’ve been putting in some serious time on the bike, including some pretty hard work. I’ve ridden 200 miles in the last four days, including 70 miles yesterday into a biting wind, at pace, for four hours.

All without a whiff of a seizure.

I know all this could change tomorrow, indeed I’ve had a couple of seizures today while not exercising.

So, I’ll enjoy things while I can and try not to land too heavily if things are inevitably changing again. Swings and roundabouts, ups and downs.

Otherwise, you’ll see me out on the roads. The sun has finally even come out to help things along.

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