What’s the prognosis?

Let’s face it, that’s what you really want to know. I know because it’s what I want to know too.

The brain tumour diarist and BBC reporter Ivan Noble avoided any knowledge or information about his survival chances. He wouldn’t let his doctors tell him his prognosis, and he would leave the room when his MRI scans were brought up on screen.

I’m the opposite. I have my scans on my laptop, and scroll through every detail – zoom in, zoom out, view the tumour from every angle, and compare the picture with others I’ve seen on Google images.

Though the knowledge won’t make the slightest difference to my prognosis, I still want all the data I can consume.

Since diagnosis I’ve researched scientific papers, read charity information, devoured books and other resources, trying to get an answer to one big question.

How long have I got?

Like with the Saturday football results, if you don’t want that information yourself, then look away now.

To start with, the doctors aren’t telling.

My first consultant, the brain surgeon who first told me my tumour was inoperable and incurable, talked on that first day of 10 years of survival, perhaps, even probably, more.

My current neurologist, who is now overseeing my care, has said these tumours are measured in years, sometimes 15 years.

But I’m starting to learn from books on cancer that doctors tend to tell you what you need to know, when you need to know it. They’re often unwilling to give a prognosis because they don’t know themselves.

Brain tumours by their nature are unpredictable. The doctor’s job is to tackle them when they can, not to try to predict the future. Fair enough.

One thing they have told me is that the kind of tumour they suspect I have – a low grade glioma (LGG) – cannot be cured. It can only be managed.

There are, it turns out, three big problems with LGGs.

First, they always come back, even if you attack them with surgery, radiotherapy and chemotherapy.

Second, they can turn into a high grade glioma, a malignant cancer.

Third, even if they don’t turn malignant, they continue to grow, pressing on bits of your brain and eventually killing you that way.

Hard to read perhaps, but when I write about prognosis here I’m not talking about chances of my survival. I’m talking about how long I have to live.

So I retreat to the literature. And you’ll quickly see one of the biggest problems in trying to get a perspective on my prognosis. There’s lots of information, much of it confusing, little of it comparable, and there are a considerable number of exceptions and what ifs.

If you get confused by what follows, you should try reading the originals.

A lot of the brain tumour books talk in anecdotes. In one it says the best news is that LGG patients sometimes live up to 20 years or longer. But sometimes isn’t a statistic. It’s reassuring on first read, but it could be just one person.

Cancer Research UK can be relied upon to put it pretty straight when it comes to prognosis, and its information on low grade gliomas does offer a clearer idea.

(But, it seems, there are a number of different types of LGG, and I don’t yet know which I’ve got.)

According to Cancer Research some 65% of people with low grade astrocytoma live for at least 5 years. About 66 to 78% with a low grade oligodendroglioma live for at least 5 years. People with low grade ependymoma will live for about 10 years after surgery. (But I’m not getting surgery). When the LGG turns into a higher grade, the survival rates plummet.

(By the way, LGG offers pretty good survival rates compared with other brain tumours.)

Confused yet? Enough sub clauses, parenthesis and what ifs for you? Then we’ll continue.

A comprehensive and up-to-date medical journal paper on LGG noted that 40 to 50% of patients will survive 5 years or more, and it quotes more recent data suggesting half of LGG patients are alive after 10 years. The smaller the tumour, the younger the patient and the fewer the symptoms, the better the prognosis is, and I just about hit all those markers.

The best and clearest, if not the most welcome, information I’ve been able to find has been from the UK National Brain Tumour Registry, which does exactly what you’d imagine.

The registry offers an actual graph showing survival rates comparing my type of tumour (a grade II cerebral glioma) with others, and based on the region where I live.

You can see the full graph by clicking on the image, or you can read the paper yourself. I’ll give you the headlines.

About 25% of LGG patients die within a year of diagnosis. After two years, a full third will have died. That’s a pretty steep drop-off, but one probably due to lots of LGGs causing symptoms for the first time when they have already grown very large. Lots of LGGs are discovered before they cause symptoms, in an MRI for another complaint.

The survival rate decreases pretty slowly and steadily from then on. By five years, just under half of patients are still alive. Hypothetically extend the graph further, and by 10 years there aren’t likely to be many LGG-ers knocking around.

This isn’t the place to describe what that means to me personally, except to float the idea that – on this data – the chances of my seeing my kids hit university are, well, they’re next to nil aren’t they?

But, of course, there’s another spanner in the works. I might not have an LGG at all. Yet another statistic tells me around 40% of LGGs are misdiagnosed on MRI scan alone.

Doctors only suspect I have one; they will only know my tumour type if I have a biopsy.

And having a biopsy – where they will drill a hold in my head and stick a needle right through my brain to get some tumour cells – is pretty dangerous when it’s in this position. And there’s no guarantee they’d get the right bit anyway.

A biopsy isn’t worth doing right now just to know the tumour’s type, so they’ll only do it when they have to start worrying about treatment: that’s if the tumour starts to grow quickly, otherwise changes, or if my symptoms get worse.

And if I haven’t got an LGG, then we can throw out all of these figures completely. And replace them with a whole new set. Who knows if those numbers will be better or worse?

All of which brings me to the key point here: statistics about my prognosis make me feel better because they offer me at least something to work with. If I know the rough shape of the box I’m living in, then I can expand, contract and reshape my life to fit into it.

But there are so many what ifs that, it turns out, I don’t really know that much at all.

Doctors rarely tell a cancer patient they are cured forever. After radiotherapy and chemotherapy, they say the cancer is in remission or a tumour has gone. Many cancer survivors stay under monitoring for years, and will never see a bump or even a common cold the same way for the rest of their lives.

With cancer and with brain tumours like mine, when doctors offer certainty it can mean only one thing: there’s nothing more they can do.

So, I’ll take the confusion of the statistics, the what ifs, the parenthesis and the subclauses. I’ll continue to lap them up hungrily. And while I do, I hope I can put off any certainty for as long as possible.

*

By the way, I’ve been having a debate about whether it’s OK to Like a post like this on Facebook. Doesn’t a Like mean you’re happy for me, that you’re pleased?

New baby: Like. Had a good day: Like. Obama re-elected: Like.

Brain tumour: er… Like?

From my perspective, please feel free to Like my posts – even when they’re miserable or difficult to read. I want this information shared as widely as possible, that’s why I’m writing it. And Likes help that to happen.

I won’t take offence, OK? Like.

6 Comments

  1. Hi Gideon,

    NIce blog article. In your writing you mentioned 40% of LGG are misdiagnosed on MRI alone. Do you remember where did you see this piece of statistics ? Thanks.

    Jack

    1. Jack,

      Thanks so much for visiting and commenting on my blog. I don’t have that reference to hand tonight, but I will find it and post it here for you. I’m always delighted to answer questions of this kind here, and love to hear from my readers. Hope you have a good New Year.

      Very best,

      Gideon

      1. Hello again Jack,

        Thanks for your patience. The statistic is from the UK National Institute for Health and Care Excellence (NICE) which is essentially the governing body for medical practice in the UK.

        The statistic is taken from its guidance on treatment protocols for brain tumours. You can download the report here: http://guidance.nice.org.uk/CSGBraincns/Guidance/pdf/English (see page 58).

        The guidance is worth a read in itself, anyway.

        Hope that helps,

        Gideon Burrows

  2. I also have been diagnosed with this condition..no biopsy no answers just watch and wait… im 31 starting to get symtoms..and confused thanku for ur blog!!

    1. Hi Sarah. Sorry to hear about your diagnosis, and it all sounds extremely familiar!

      Two recommendations: On Wed 12th March 2014, there’s an online seminar about low grade brain tumours. You can find out more at http://www.bit.ly/LowGradeLive.

      Second, you might get something from my book, which follows my whole journey from exactly your position, to where I am now – two years later, still scared but a lot more reassured. You can find out more at http://www.bit.ly/LivingLowGrade

      I wish you the very best of luck, hope you have made contact with some of the brain tumour charities, and do keep us all informed with how things are going.

      Take care,

      Gideon

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