1 Harry Tells How He Dealt with the Discovery of a Brain Tumour and subsequent treatment
Following a serious car crash in August 2002, an MRI scan revealed by chance the presence of a large brain tumour. I was informed that it was a meningioma, and almost certainly non-malignant, i.e. non-cancerous. I knew precious little about brain tumours, but luckily I have a brother and sister who are both GPs and was able to ask them about the next steps and the likely outcomes. I was also receiving assistance from an occupational therapist who told me about Meningioma UK. Further contact with Meningioma UK support provided me with a great deal of helpful advice, concerning not only information on what a meningioma actually is but also what forms of treatment are used and where these can be found.
Probably one of the most amazing facts is that I had no noticeable symptoms of the meningioma, except for some slight problems with balance when playing tennis. This was thought to be a result of the car accident, but, with hindsight, it is now likely that some of the symptoms of the car crash masked the symptoms of the meningioma.
Carol and I (at the time I was 54) discussed the options and decided that the only real solution was surgery. Together with my local GP, we opted for treatment at the Frenchay Hospital in Bristol. Following a further MRI scan, an appointment was made in March 2005 with Prof. Coakham, who advised that my tumour was in fact divided into two parts. The largest part would be “relatively easy” to remove by surgery, but the smaller part, which extended into the temporal lobe, would be more difficult to deal with and for which there was a greater risk of possible side effects.
Surgery took place in the first week of August. Prof. Coakham had allayed some of my fears, but I was still very nervous about the operation itself; however, the nursing staff at the Frenchay were very good and most supportive. The operation to remove the larger part of the meningioma was a success; I did have some side effects, but these cleared up after a couple of weeks.
The next stage was how to deal with the smaller part of the tumour. Fractionated stereotactic radiotherapy at the Oncology Centre of the Bristol BRI was recommended, and this was discussed with their neuro-oncologist together with further MRI scans to determine more precisely the size and exact location of the remaining part of the tumour. Unfortunately, the remaining part of the tumour proved to be too large to be dealt with only by radiotherapy, so it was back to the Frenchay hospital for a further operation by Prof Coakham. This took place in November with the aim of safely reducing the remaining tumour to a size that could be dealt with by the radiotherapy. The operation was again a success, and once back at home I was again active even quicker than after the first operation.
The final stage was therefore the radiotherapy treatment, which I started in May/June 2006. Due to the good advice from the Meningioma UK, I was aware of what was likely to be involved, but I was still really scared about the idea that radiotherapy treatment would be carried out while I was awake. Fortunately, the radiotherapy team at the Bristol BRI were truly fantastic by carefully explaining, without rushing, each and every step of the procedures, and answering my many questions.
Fractionated stereotactic radiotherapy means that you receive only very small doses of radiation which is carefully planned and directed by specialist equipment that is attached to a standard radiotherapy machine. The planning of the direction of the beams is prepared by a computer programme, but to ensure that the beams only reach the parts that they are intended to reach, your head has to be held firm in a special frame which is then fixed securely to the treatment table while the radiotherapy machine works. In my case, I received the beams in two different “segments/arcs” that in each case lasted for only approx 25 seconds. But to ensure that the frame fitted to your head is in exactly the same position each day, a special test is carried out in advance of each treatment. Despite these necessary tests, in most cases I was actually in the treatment room for only approx 25-30 minutes.
The treatment lasts for six weeks, one session daily - Mondays to Fridays, with a break at the weekend to let the body (and mind) have a rest. I did not find the treatment too difficult to endure; I had only occasional spells of tiredness and a small area of hair loss at the back of my head in the area where the beams were most concentrated. Six weeks seemed to fly by. And, of course, my hair soon grew back.
The effects of the radiation treatment continued for several weeks after the end of the daily sessions, which did leave me feeling quite tired and for which I just took a short nap most afternoons. Otherwise I have had no noticeable side effects, and am now waiting for a review which will take place approx three months after the end of the radiotherapy treatment with a another review after six months. Each review will be preceded by an MRI scan, which will confirm, I hope, that the tumour has been “stabilised”, thus allowing me to get back to normal life once again.
So, for me, the sudden discovery of a brain tumour, although certainly eventful, has not been the end of the world that I initially feared. I am extremely grateful to Meningioma UK for all the advice and support that they were able to provide, and am more than willing to provide assistance in any way possible to help anybody through the difficult stages that I have been through myself. (please contact us to speak to Harry)
Finally, and by no means least, I am of course extremely grateful to my partner Carol, who has not only had to put up with all the above but has done so with much love and care. Without her it would certainly have been much, much harder. [end]
2 Jean Comments on the
Importance of Good Communication
I was diagnosed with a meningioma tumour two years ago, and
had an operation to remove it in the summer of 2005. This operation was
successful in partially removing the tumour, and then I waited sixteen months
for radiotherapy treatment to arrest further growth. One of the over-riding problems I experienced throughout
this daunting, and often frightening, experience was a lack of information
relating to my condition. Since discovering Meningioma UK,
and reading their simple, but oh-so-informative handout on my particular type
of tumour, I realise how much information like this would have meant to me at
the start of my brain tumour journey. We all know how hard it is to understand, absorb, and retain,
verbal information at the time of diagnosis with a serious medical condition.
The questions we need to ask are not forthcoming in the initial state of shocked and disbelieving reaction to the
news. Surely there ought to be some system available by which
patients could access general information about their condition – how helpful
that would be! Also, one’s own particular situation needs some kind of
setting where, what may seem to our doctors as simple or even trivial
questions, could be answered. Of course, I am aware of time constraints and the
pressure of patient numbers, but, nonetheless, it should be within the bounds
of possibility to offer or arrange something
more than a general health helpline for patients newly diagnosed with a serious
medical condition – not that I was offered even that! To give you just one example: on the lead-up to signing the
consent form for the radiotherapy, it would have been good to know that the
type of rt I was about to receive was not available across the country. And
some explanatory information about how it worked, how it targeted the tumour
and so on would have been reassuring too. Don’t get me wrong, I am not
suggesting we should be at the receiving end of a high-tech medical lecture,
but a simple, clear explanation such as Meningioma UK later gave me would have
been very welcome at the time. I hope this doesn’t sound like a rant. I am extremely
grateful for the medical treatment I have received. I deeply appreciate and
recognise the skill and care of my neurosurgeon and his team. But I want to
underline my view that communication is vitally important in all our human
interactions, and never more so than when we find ourselves confronted by a brain tumour diagnosis. [end]