- Some reflections by someone concerned about people with brain tumours and their carers and relatives.

I have always felt a little uneasy when brain tumours are described as "brain cancer". There are two reasons for this: (a) strictly speaking, a primary brain tumour is not a cancer, and (b) we will never start to increase public understanding and a medical focus on brain tumours until the spotlight is turned on the issue. Unfortunately, many carers and sufferers have given up in despair when trying to explain just what a brain tumour is and will refer to their illness as "brain cancer". Their reasoning is that people know generally what cancer is and can understand the concept, however, they may also have picked up some strange vibes from their friends and relatives who are saying privately: "Oh no, not a brain tumour, that's worse than a cancer".

That's why in Marg's funeral notice we proudly declared that she had undertaken a courageous journey with a gbm iv brain tumour. I felt that by this we were doing our bit to increase the community focus on brain tumours.

The other experience which made me diffident about being part of the "cancer community" was that while we had received sympathy from those associated with the cancer organisations they could not offer us much in the way of specific support or information. We once went to a cancer support group meeting and the only other people present were a man with head and neck cancer and his wife, and a brain tumour patient, all of whom had been told about the meeting by Marg or I.

Nevertheless, after Marg died I accepted an invitation to a workshop run by the local Cancer Council, to assist those who might later become involved with establishing or running a support group. That workshop at least helped me clarify in my own mind that I was not cut out to establish or organise a support group in the traditional style but my interest lay in the dissemination of information resources to brain tumour sufferers and their carers. That realisation was followed by creation of the organisation "Brain Tumour Publications and Resources (BTP&R)" to import supplies of the best available printed resouce material and to make them freely and quickly available.

Since then I have become involved in other patient, carer, and advocacy groups.

And so I attended the Canberra Conference of 80 invited participants from around Australia with quite a few diverse ideas in mind. For a start I hoped to alert my fellow attendees about BTP&R and prior to the gathering I sought permission to distribute my brochure which illustrates the available publications. The organisers were a little hesitant: "Your request poses some problems as we don't have a view on the material you are promoting and can't be in a position to be seen as endorsing it" but it was suggested I bring 50 copies and make them available after checking with the Conference convenor. In fact the Convenor was quite happy to have them on the table for collection by participants and I managed to give him a five-minute run down on the brain tumour community nationally, including the wonderful OzBrainTumour electronic group.

In the general discussion following the keynote address I was also able to mention to the gathering that my interest was in brain tumours but no one else subsequently identified themselves to me as having a similar interest so I guess I was the only one present. In the workshop I attended I distributed the BTP&R pamphlet to all those present.

Our numbers are small and this explains a lot. Here is a table taken from a Cancer Council publication distributed at the gathering. "Brain cancer" is second from the bottom, between ovary and uterus cancers

No wonder they describe brain tumours as an "orphan disease" in the United States.

Breast and prostate cancer have both received a fair amount of community publicity in recent years and at the Conference a new handbook on prostate cancer was launched. Prostate is listed second, and breast third, in the above table.

Before raising some issues for consideration by those who have a primary interest in brain tumours, I will report on some random pieces of information that I obtained from the gathering.

Internet: while the people reading this are undoubtedly internet-aware, there was little or no acknowledgement by the key speakers of what is happening "out there" where patients are researching the Internet about their particular health interest and are participating vigorously in discussion groups centered around a specific illness. In fact, when I mentioned this phenomenon to the gathering I was reminded that "it can be very dangerous because of a lot of misinformation out there". True, but that has not deterred thousands of people from choosing this path. Isn't part of the answer to provide trustworthy websites with links to reputable sources and the best "filterers" are those who are already experienced with the printed resources.

Other random facts and quotes: Only 2-3% of patients in Australia particpate in clinical trials, those who do seem to benefit. AIDS advocay led to the fast tracking of AIDS clinical trials, which has led to a "fantastic prolongation of life". A diagnosis of cancer raises in people "a consciousness of the frailty of existence". The body can become "a house of suspicion". The future memory of cancer survivors is disrupted by their experience. The experience of survivors can be likened to those who suffer a coronary occlusion, those involved in a road trauma, and those who were unjustly imprisoned or tortured. "The making of meaning is always done by narrative". The National Breast Cancer Council has prepared psychosocial guidelines which have been endorsed by the NH&MRC. The emergence of telemedicine might be followed by telepsychology. There is a teleoncology project at Royal Adelaide. "Cancer Voices NSW" is a new network of 76 advocacy and support groups. The consultations prior to this meeting involved 890 people in 42 communities who came up with 129 issues for further refinement by the gathering. From the workshops there were requests for - better access to information, the preparation of a survival kit, the need for a multi-disciplinary approach, quicker feedback to the primary medical carer, access to cancer specialist nurses, reviews of the patient travel schemes, the linking of patients with specialist resource people to travel with them through the journey, consumer guidelines on psychosocial issues, the provision of "tip sheets" to take to appointments with doctors, take another person to appointments "four ears are better than two", better after-hours support, etc.

Obviously, these potted notes can scarcely do justice to the many valuable observations made by the speakers and participants and I am grateful to the Cancer Council ACT for nominating me to attend. I understand that the presentations and recommendations will be collated for publication soon.

What does all this mean for the brain tumour community?

I may be completely wrong but this is my feeling at this time: We are a small community which is geographically diverse, we have no national organisation, we need to raise community awareness of brain tumours, we are accepted within the "cancer community" and we have certain things in common but we are probably there by default. Because of the cancer community's generosity we are not homeless, however, until we "break out" and establish a separate identity we will only "mark time" as far as understanding and attention (i.e. clinical trials) are concerned. And while we mark time the life expectancy and quality of life for those with the different types of primary brain tumours will not advance much from what it has been for the past 20 or 30 years.

At some stage those of us who have travelled the journey with a loved one and still have a desire to assist others, and those who have recently embarked on the journey or are continuing it, and have a little bit of spare time, must pool our talents and resources to develop a loose national organisation that can work towards a better deal for brain tumour patients, their relatives, and carers.

Denis Strangman

5 February 2002.

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