Monday, November 26, 2012

The results.

I didn't know for a while what I wanted to say about the biopsy results. I didn't know if I wanted to make it public. I don't want to be defined by this, and I don't want it to affect my career and I don't want any sympathy and constant questions about it.

But I'm getting that anyway so maybe this will help.

I hadn't put much thought into the results before surgery, looking back I don't think I had the capacity then to contemplate the options. I was too busy thinking about the possible side effects and risks of the surgery itself, to even think about the biopsy tests on the tumour.

The type of tumour I had was a meningioma. Over 90% of meningiomas are grade 1, benign. We were told the pattern of mine (visible from the MRI scan) suggested it had grown very slowly over a number of years and was therefore most likely to be a grade 1. After that, I didn't really think about it.

The results came back very quickly, within two days of the operation. The news that my meningioma was indeed grade 1, and benign, was very welcome. But. It was pretty much on the border of being a grade 2, atypical, which means that although still benign, it is "likely" to grow back. They were clear that if that happened, the medically preferred treatment would be surgery. Again.

Fresh out of theatre with my head still in bandages, I struggled to see how this was good news. Naively I had assumed that this was a one off thing, get through this and back to normal life as soon as possible. It was a bit of a bombshell.

Normally, people are old when they get meningiomas. Being early (mid) thirties, there is plenty of chance for it to grow back. If it grows back every 10 years, that is potentially a lot more times I might need surgery.

I really don't want to go through the surgery again.

When I was first out of hospital I mentally parked it, I just couldn't think about it. I was so glad the surgery was over, to still have use of all my limbs and to be back home - that's what I focussed on. I was devastated at the thought of having to go through this again and couldn't process it. I just wanted a bit of time not thinking about it.

One month on, I am in a (slightly) more emotionally stable place and able to be more reasoned. Firstly, how likely is likely? Nobody can answer that. We can look at previous cases but nobody knows what will happen in my individual case.

The fact is, I will be having loads of MRI scans for the rest of my life so any regrowth will be picked up early. At which point I can worry about the implications. Right now, it seems a waste of energy and time thinking about what might happen.

I don't want to plan my life around when I might have to have the surgery again, and I can't let it restrict my decisions and take up my thoughts with worry. I will try and put it to one side, in between scans. Mostly though, I don't want it to be what people think about when they see me - is your tumour back?

What I'm really hoping for is a huge advance in technology, that magically removes tumours from inside a skull, without the need to open it. Ten years is a long time, surely this will be invented soon...