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...


  1. Such a huge amount to take on board Jen. You are managing it all so well - even though it might not seem so from your side.
    Who knows what will happen to anyone over the next 10 years? Who knows what technological innovations there might be? Its perfectly possible they could dissolve a tumour from the outside, and its perfecctly possible they may not.
    As you say, you don't want this to define you - this is not something you want to give up your valuable life worrying about. You need to properly recover from this surgery, then put up with the MRI scans you need as a precaution and protection for your future. There may not be anything to see for years and if there is - you will be in a better place to deal with it.

    I mostly don't like to comment on your blog, because its yours - they are your thoughts, who am I to comment on them, but I so admire you for sharing your thoughts - they might help someone else in the future. Sometimes though, I want to comment so you know we are out there reading it and wishing you better - and wishing you didn't have to be doing this, and being glad for every step forward you make. Roll on back to work day (with afternoon snooze)! x

  2. I went thru cancer just a little over 5 years ago. I never thought the day would come when I didn't think about it much at all. But it does come.
    Those years made me a better person. I learned things that I never knew about, made deep connections with people I never knew before. I think my trust in my wonderful doctor also got me thru. It was exhilarating trusting so many strangers. xx