PCNSL is an aggressive form of non-Hodgkin's lymphoma arising in and confined to the brain, spinal cord, leptomeninges, retina, vitreous humour and occasionally optic nerve. Although rare - the incidence of PCNSL in developed countries is 5 per 1 million person-years - incidence has trebled over the last 30 years and there is a slight male preponderance with most patients aged 60 years or more. PCNSL accounts for 3-5% of primary brain tumours.
Patients with PCNSL usually present with neurocognitive symptoms (due to deep location of the tumour) over a few weeks - 70% focal neurological defects, 33% raised intracranial pressure, 14% seizures and 4% ocular symptoms. Headache is a RARE complaint, whereas behavioural changes are COMMON.
So...as you can see....time is of the essence if this condition is to be diagnosed and treated/managed.
For me my symptoms developed over 2 to 3 weeks, they included short-term memory loss and confusion, reading the wrong words in passages of text, getting lost twice when driving home from Malvern. I had a headache on the day I collapsed but not a typical brain tumour headache (I had had some over the previous days but they went away each time) and this might have led my GP to tell me, confidently, the day before that my condition didn't sound like a brain tumour! He arranged blood tests for later in the week and I was to see him within the next week or so (which probably would have been too late!).
However, as subsequent hospital tests would show, there was nothing relating to the PCNSL showing in my blood, or cerebrospinal fluid or bone marrow, and no tumours anywhere else in my body.
The Paramedic which attended to me after my collapse carried out the usual checks and found nothing abnormal except for a slightly raised blood sugar level. I'm fortunate in that she insisted on taking me into A&E to be examined by a doctor. If she had not, the outcome could have been very different! And so I'm very grateful.
I'm also very grateful to the two A&E doctors who attended to me that evening. Jane has told me endless times how impressed she was with their diagnostics - and that's praise indeed! They were 'on the case' straight away as if they had an inkling of what was wrong. It was they who carried out the blood tests, chest X-Ray, and arranged for me to stay in overnight for scans. Had they not done so again, the outcome could have been very different.
And so, all in all, I'm very pleased that I collapsed that Tuesday evening in February. If I had been taken down the GP route it is likely that I wouldn't have survived long enough to hear the results of 'normal' blood tests or any other tests the GP may have thought of. And it is very likely that even if he had suggested a scan, I would have been on a waiting list longer than the time which I had left on this planet!