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On diagnosis with a very rare brain tumour

From Daniel Mason

I’m 23 years old. About 4 or 5 years ago I started to have these 'funny feelings'. They were like a slight tingling sensation in my left arm, shortness of breath, and light headedness, as if I’d stood up too quickly. I also had the feeling I was biting into a lemon.

These feelings would only last around 10 or 15 seconds at a time and only happened around every 4 weeks to start with. I just thought I was drinking too much coffee or was over tired.

At the beginning of 2007, I started to dribble a bit whilst having the funny feelings. My wife thought something wasn’t right and that I should go to the doctor as soon as I could. Luckily enough I did. After explaining all the above to my doctor, I had an MRI and was sent to a specialist in Portsmouth.

I was told that I had an abnormality, possibly a brain tumour. The funny feelings were linked to where the tumour was located - it was causing mild epilepsy. What I was having was a mild seizure, although I’ve never had what you would think of as ‘a fit’. I was given some tegretol tablets and told that I needed to see a surgeon.

A few weeks later I was told that the doctors had never seen what was going on in my head! This wasn’t good news. In July 2008 I was swimming and suddenly had an almighty headache, so severe that I got rushed into A&E. I knew it was the tumour playing up. I had had a haemorrhage.

Things were not looking so good for a few days. After another scan in October 2008 something else had changed. The tumour had wrapped itself around the main blood vessel in the brain, now making it inoperable. After lots of discussion the surgeon suggested I have an open biopsy, so that they could see what was going on inside my head. I had that on 2nd January 2009. After the recovery phase I was called in for the results.

It turns out that I have one of the rarest brain tumours there is - a pleomorphic xanthoastrocytoma (PXA for short), WHO grade 2. This means that it is a slow growing tumour that is cancerous. My life had just turned upside down. I didn’t know what to think. Now, I’m not just dealing with a brain tumour – it’s cancerous. So I got referred to my oncologist for 6 weeks of radiotherapy, which started at the beginning of March. As I mentioned earlier, because of the position of the tumour I cannot have this taken out because there is a high possibility of having a stroke and not waking up.

Nobody has enough info about this PXA so they can’t give me a prognosis. Let’s hope the radiotherapy slows the growth down for about 10 years, and that medical science is bigger and better then, so something can get done!

It feels as if I’m out there by myself, with only my family supporting me. Nobody has enough information on this tumour to give me a prognosis and that is very hard. I have just had a follow up scan and am due to get the results soon. Until then, I really don’t know what to expect. I’m back playing the waiting game until I get the results. It’s hard waiting not knowing what the next stage is in my life - either to start chemotherapy or to just watch and wait...

More information

On CancerHelp UK there is more information on What is pleomorphic xanthroastrocytoma?

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Updated: 30 March 2010