Tuesday, April 28, 2009

2007 - My Story for the Brian Tumour Support Service

After the second operation I contacted the Queensland Cancer Council and joined their Brain Tumour Support Service. It was great to be able to discuss matters with others who are in a similar, and often much worse, situation. The newsletter is always a good read, especially the stories of the people in the group. It inspired me to put pen to paper myself and my story also appeared in the newsletter.

Here it is:

13 March 2007

I was pretty shell shocked in November when I found out that I had a recurrence of the brain tumour that I thought I had beaten. In the space of just two weeks I went from a state of thinking that I was cured of a brain tumour that was removed many years ago and that I had a long life ahead of me, to one where I was desperately combing through the research articles looking for survival statistics that would give me some hope of living more than just a few years.

My story starts in 1990 when my girlfriend at that time informed me that I was going to the doctor because “something really weird happened last night”. It turned out that I had a grand mal epileptic seizure in my sleep. After many tests it was decided that I had developed epilepsy as an adult which was unusual but not unknown. One of the tests at that time was a CT Scan of the head which showed a dark shadow on the right frontal lobe. It was dismissed as probably the result of a bump on the head as a child. I started taking dilantin to control the seizures but twelve months later I had another one in my sleep, so we increased the dose. Then I had another one nine months after that and the dose was increased again. We took a holiday in Bali over the 1991 Christmas / New Year period but the seizures in my sleep returned and by the time we returned to Australia they were occurring weekly. Once again the dilantin dose was increased and the seizures were brought under control. When more seizures occurred in 1992 and 1993, we decided that we wanted the tests to be repeated in an attempt to find out why the epilepsy was steadily getting worse. That time I had an MRI scan and the conclusion was that “...an atypical low grade cystic glial or neuronal tumour such as a ganglioglioma could not be excluded.”

That MRI report was a shock for me as it was the first mention of the possibility of a brain tumour. Once I saw that report I just wanted the thing out of my head as fast as possible! Dr Michael Redmond operated on me in Brisbane's Princess Alexandra hospital and removed a four centimeter, triangular tumour. The pathology tests identified it as an Astrocytoma grade 2.

Annual CT scans through to 1999 showed no signs of regrowth and after a further scan in 2001 came up clear my neurologist declared that I was cured and there was no need for further checks. During this time I got on with my life running half-marathons, bush walking, rock climbing, studying Spanish and taking long service leave to visit South America from January to April 2006. Relationships changed and I met the wonderful woman I now live with, Cheryl Horner. I am so lucky to have met Cheryl as our love for each other has supported us through our current crisis.

Things started to go pear-shaped at the end of October last year, a few days after I returned from a great climbing trip to Mt Arapiles in Victoria with a bunch of mates. A seizure snuck up on me in my sleep again (don't you hate those bloody things...) so the Doc sent me off to get a blood test to check the dilantin level and a CT scan as it had been five years since my last one. It turned out that the dilantin level was low, but alarm bells really went off when the CT scan reported a recurrence of the previously treated glioma. An MRI confirmed the finding and once again I found myself on the operating table with Dr Redmond about to go digging around inside my head.

The operation was successful although, interestingly, this time the pathology on the tumour has identified it as a Grade 2 Oligodendroglioma (ie. Not the Astrocytoma finding in 1993).

What is really getting to me this time, and I would welcome any feedback on this, is that now I am being told that I am lucky to have survived for 13 years, that the tumour will definitely come back and there is no cure! Being the analytical type that I am, I have been searching the literature to confirm what I have been told. There are heaps of studies with varying results which seem to suggest that the five year survival rate is around the 60-70% mark and the ten year survival rate is only 40-50%. My doctors are agreeing with these figures so now I am thinking that I have already beaten the odds to last this long and the future looks pretty grim. However, I am trying to stay positive and I am drawing a lot of inspiration from reading the survival stories of others.

Following the surgery we found ourselves working through the dilemma associated with a low grade glioma of what to do next. There was a strong argument to do nothing but monitor the situation and treat the tumour again when (not if) it returns. The other school of thought was to reduce the number of remaining tumour cells through chemotherapy using temozolomide thus giving my own immune system the maximum chance of getting on top of this thing. The problems with the latter approach were that there is a lack of long-term studies on the use of temozolomide for low grade gliomas that support that approach, the chemotherapy could take 12 months to be effective (K. Hoang-Xuan et al, JOURNAL OF CLINICAL ONCOLOGY, VOLUME 22 NUMBER 15 AUGUST 1 2004), the Australian Government does not subsidise the use of temozolomide for low grade gliomas which is a problem when it would cost AUD3,000 per month and finally, it was unlikely to be effective unless there were mutations on the first and nineteenth chromosomes. Apparently the p arm is often missing from the first and the q arm from the nineteenth (the so called 1p and 19q deletions).

At that stage I had been referred to Associate Professor Paul Mainwaring at the Mater Oncology Centre so he ordered a further pathology test and we found out that my tumour did not have the 1p/19q deletions. Oh well, so much for that idea!

I have to tell you about Aspro Mainwaring. He is one of the most enthusiastic blokes I have ever met. He works at a million miles per hour and you have to be quick to keep up with him. At my first appointment I trotted in with a few pertinent papers that I had found on temozolomide and he was very excited that I had already done some research. He then turned his computer screen so I could see it and proceeded to show me various good papers that I could read. That suited me just fine as I enjoy finding out about new things. And at the end of the session he gave me some “homework” reading before our next appointment. What a pleasure to find someone who encourages patients to do their own research.

The options for my low grade tumour were just about exhausted apart from experimental drugs. Paul Mainwaring has done a lot of research on anti-angiogenesis medication and he offered to help me with that option if I was wished. It first required yet another pathology test, this time for PDGF (Platelet Derived Growth Factor) in the tumour. There was trouble getting a result on the PDGF test as it is not commonly performed, and in the meantime my own reading about the proposed drug Gleevec put me right off the whole idea so I did not pursue that option.

Now I am in that delightful state known as “watch and wait”. Nothing more is to be done (other than regular scans to monitor the situation) until the disease gets worse. If it changes to a malignant tumour then we can swing into action with Chemotherapy and/or Radiotherapy. With just about any other disease it is best to diagnose and treat it early, but with these low grade brain tumours that does not seem to be the case.

I am thankful for those years I have already shared with Cheryl and I am getting on with life once again and treasuring every extra day now. I have returned to work for four days per week which gives me a long weekend every week to get out bushwalking and enjoying the outdoors as much as possible. One thing I will say in favour of having a brain tumour is that it really makes you focus on what is important in life and for me that certainly is not the 9 to 5 grind. As a motivator, a brain tumour is hard to beat!

Email: laurieandcheryl@hotmail.com

2 comments:

  1. I am at the stage of doing research having been told my tumour is back, after surgery in 2003. Mine was diagnosed after years of uncontrolled epilepsy (the meds constsntly needed increasing). After the initial shock of having a brain tumour, and the relative ease of surgery, I tried not to think about it. I was scanned annually and my epilepsy was now under control- I even got my driving licence! Now I'm scared and like you trying to find hope in quoted survival rates. When I see my neuro team following another scan soon I guess I'll know more. I suppose depending on the size of regrowth they may watch and wait. I just wanted to thank you for your blog- it helps tremendously.

    ReplyDelete
  2. HI Morph,

    It is very encouraging to hear that this blogging has helped someone.We all have a slightly different journey with brain tumours depending on type of tumour, location in the brain, and grade. If you want to read some amazing suvival stories, have a look at the btbuddies site in the uk at
    www.btbuddies.org.uk
    and if you have a benign tumour, I have found the community at "Its just benign" very supportive (see link on my blog)

    All the best
    Laurie

    ReplyDelete