Sunday, 22 March 2009

Week 1 ........ unwelcome news

Last Tuesday (17th March) - I received a phone call from my GP to say that a CT scan has revealed the presence of meningioma and I will soon be seen by a neurologist. My doctor was at pains to reassure me that this does NOT mean that I have "brain cancer" because a meningioma is a benign (non-malignant) tumour which grows on the outer coverings of the brain. It is also slow-growing.

Starting this blog is not particularly easy and this post is probably going to be the most difficult part about it! But finding out that I have a brain tumour seems to me to be a pretty momentous thing and so perhaps I should write things down while I still can. Although my ability to think, speak and write will not necessarily be lost in the weeks to come nothing can be taken for granted - so here goes!

I will admit that I did not have the presence of mind to ask any pertinent questions whatsoever - such as How Big Is It? or even Where Exactly In My Head Is It? No doubt I will find all this out when I see the neurology specialist. I just hope that there is not a long waiting list for an appointment.

Finding out about brain tumours

Of course, since being told of the CT finding I have had my nose hard pressed to the monitor as I searched the Web for information on brain tumours in general and meningiomas in particular!

Symptoms of a brain tumour appear to vary widely according to the size and location of the tumour. Some people have few, if any, symptoms until the tumour is quite large. My own symptoms have been very vague until the past few weeks when I have noticed occasional difficulty finding the right word(s) when writing or speaking ... however I had put this down to natural ageing and also to having lots of things going on in my life! The only regular 'symptom' has been nausea, accompanied by mild headache, that comes and goes in the daytime but regularly wakes me up about 3 a.m. making further sleep impossible. This has been going on for several months but I cannot pin point when it first started.

A useful and comprehensive source of information that I found is A Primer of Brain Tumours - A Patients Reference Manual published online by Massachusetts General Hospital and Harvard Medical School. There seems to be very little by way of information online originating in New Zealand, which is a shame. However, USA and UK seem to have a number of resources which I will continue to explore and, as I find links and resources, I will list them on this blog.


Meningiomas arise from the coverings of the brain called the "meninges". There are three layers .... the dura mater (outer layer), the arachnoid (the middle layer) and the pia mater (inner layer). Meningiomas grow out of the middle layer and account for around 20% of all primary brain tumours (primary tumours are ones that have not spread from a tumour elsewhere in the body). If located in an accessible area, surgery may be the treatment of choice for a meningioma but I don't yet know where mine is. If the meningioma is sited in a more difficult area then partial removal may be possible, and some meningiomas may require additional treatment such as radiology or chemotherapy.

Though the majority of meningiomas are benign, they can have malignant presentations. Classification of meningiomas are based upon the WHO classification system.

  • Benign (Grade I) - (90%) - meningothelial, fibrous, transitional, psammomatous, angioblastic (most aggressive)
  • Atypical (Grade II) - (7%) - choroid, clear cell, atypical
  • Anaplastic/malignant (Grade III) - (2%) - papillary, rhabdoid, anaplastic
As an ex-nurse I remember that we used to refer to all tumours, whether benign or malignant, as SOL's (space occupying lesions) so although meningiomas are generally described as 'benign' they can still cause damage by taking up 'space' and pressing against the brain. I will feel happier once I know more about its exact size and position.... at least I think I will.