So you’ve got a brain tumour?
If at all possible, leave the country for a few days. Go somewhere, anywhere that isn’t home. I say this with experience, since I took my brain tumour to Lisbon the very next day… icecream and custard tarts cure all problems of the heart.
Once you’re back, the well-meaning tales of reassurance will begin. They usually go something like this… a friend of a friend, or a distant relative “had it out, and has been completely fine ever since”. Maybe you’ll feel *really* pleased for them. Or in truth, you might not care very much, because you don’t know said person and, it’s all quite unhelpful tbh.
As is the “oh… you’ll be fine” line because actually, at this stage – it remains to be seen.
Then, you can expect to drown in questions (from EVERYONE) while you wait for the plan…any plan.
Flow charts and Brain tumours
In 2016, the World Health Organisation (WHO) published new guidelines on the Classification of Tumors of the Central Nervous System.
There might have been a fanfare, but if there was – I didn’t hear it. But, I can imagine all the years of research papers, committee meetings and tea and biscuits required behind the scenes.
The guidance recognises the need to combine both the histological and the genetic features of a brain tumour to provide a more accurate diagnosis.
The use of some terminology is discouraged, and in some instances, the tumour family trees have been reconfigured.
2016, may feel like a really long time ago now, but in reality, the guidance is still bedding-in (because you know, the healthcare system is BIG, and you can reasonably assume that there are variances in working practices, access to facilities and expertise.
Here to talk about Gliomas
The Manchester-wide neurosurgical team (including my very-own surgeon) recently held a first-of-its-kind information day for low-grade glioma patients. The event broke new ground not only in Greater Manchester but potentially nationally too.
The large conference room was almost full, despite the fact that low-grade gliomas are incredibly rare. Affecting only one in 100,000 people (look who was paying attention!!).
Gliomas develop from glial nerve cells (and are therefore termed tumours of the brain, rather than tumours in the brain). Diagnosis tends to happen around the age of 40 (but obviously not for me…).
Our brain tumours are distant cousins – sharing key ‘glioma’ credentials, and yet each being notably different.
You could call us ‘the lucky ones’ since our brain tumours are growing slowly (how slowly – well, everyone is somewhere on a continuum, so that depends).
And whilst we may have picked the slightly longer of the short-straws brain tumours are never a good thing.
There are some things that we know
We’re all pretty partial to knowing where we stand, and there are some things that we know about gliomas (which also apply to a lot of other brain tumours).
Neurosurgeons want the pesky brain tumours out so an aggressive first-line surgical approach is favourable. Why? Well, resection appears to equate to longer life expectancy.
Let’s call it keeping your hedge trimmed so that it doesn’t bother your neighbours.
Given the complexity of benefits and risks, (as you’re probably aware) there are multidisciplinary team structures in place to weigh it all up and suggest what’s best.
We (by that I really mean the experts) know that there are *some* chemotherapy drugs that work (Hey PCV, and Temozolomide) and that a combined approach (where appropriate) – with radiotherapy seems to be the best bet.
You are likely to find us popping (anticonvulsant) pills whilst trying not to drink too much wine… since up to 80% of us experience seizures.
Why treating a brain tumour depends
So, we know a fair amount. But, this is where it gets tricky because, in fact, there are a lot of known unknowns.
By that, I mean a number of factors that are thought to impact on our overall response to treatment, but exactly how they interact is a bit elusive.
These are things that are unique to us; our general health; lifestyle and age. And, brain tumour specific stuff – like the size; location and our biomarkers.
For now, treatment remains somewhat iterative. Follow the key steps and then reassess as you go along – with each procedure and each scan. For every brain tumour – it will be slightly different.
Without one of those ever-so-handy crystal balls, the answer remains it depends, it depends, it depends.