REPORT OF THE 3RD QUADRENNIAL MEETING OF THE WORLD FEDERATION OF NEURO-ONCOLOGY (WFNO) AND THE 6TH MEETING OF THE ASIAN SOCIETY FOR NEURO-ONCOLOGY (ASNO), HELD AT YOKOHAMA 11-14 MAY 2009 - Denis Strangman, 24 May 2009.

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One of the fascinating things about this joint conference held at the Pacifica Yokohama convention centre was the Opening Ceremony and Charity Concert at which Musica Neurochirugiana performed Mozart's composition The Magic Flute and a solist (Chiharu Sudo) played a piano concerto, following the opening speeches. The symphony orchestra Musica Neurochirugiana was established in 1987 and is composed exclusively of members of the Japan Neurosurgical Society and their friends and family members. Professor Masao Matsutani, who was President of the Conference, was one of the violinists. Funds collected from admission by a donation from the public went to two paediatric cancer charities.

IBTA display table

The IBTA had a table display in one of the conference foyers and was kindly assisted by members of the Japan Brain Tumour Alliance. Dr Susan Chang (President of SNO and Vice Chair of the Conference Committee) "launched" the IBTA's 62-page book on the "First Documented, Modern-Day Brain Tumour Surgery for a Glioma" and mentioned it during a key session, as did Dr Manfred Westphal who was chairing another session. We shipped 300 copies to the Conference and soon ran out.



The IBTA display. L-R Denis Strangman (Chair, IBTA). Mr Hisato Tagawa (Co-Chair, JBTA). Ms Takako Iwasaki  (JBTA). Ms Eiko Omura (JBTA). Unfortunately, the JBTA Chair Mr Tomioka was unable to attend because of other commitments.

Dr Susan Chang launches the IBTA book. IBTA Chair Denis Strangman (R).

Ms Masako Itaya (JBTA) and the IBTA Chair,
Denis Strangman. Ms Itaya also speaks German, in addition to English, and was able to converse with several of the German participants.

At a session open to members of the public on the Tuesday I spoke on behalf of the IBTA about "The European brain tumour patient and caregiver community: achievements, challenges and the pursuit of hope". My address, which was similtaenously translated into Japanese for the mostly Japanese audience, is available here.

Significant developments

At a conference of this nature, where there were more than 100 presentations and over 200 posters, any attempt to summarise the key points invariably becomes an arbitrary exercise influenced by the author's interests. What follows are some of the highlights from a patient and caregiver's perspective, with an admission that the highly technical presentations were way beyond my level of understanding. Some items had previously been reported at the March 2009 Trends in Central Nervous System Malignancies Conference held at Budapest, which the IBTA reported on here, and have not been repeated in this report. Some research reports, only alluded to here by their authors, will undoubtedly be the subject of more detailed presentations at the forthcoming ASCO conference.

A full set of the Conference Abstracts, on which this summary is based, is available for download as a 196 page PDF file here.
Low income countries:

Speakers at the low income countries session. L-R: Stuart Grossman, Juletee Marie H. Feliciano-Batara, Rakesh Jalali, Eric Bouffet, Emil Makimbetov, B. Diez, Jonathan Finlay, Ibrahim Quaddoumi.

Dr Salvador Villa (R) with Takako Iwasaki (JBTA)

KAMAKURA

On the day of my scheduled return to Australia my hosts from the Japan Brain Tumour Alliance very kindly accompanied me on a visit to Kamakura, which is an ancient city that thrived in the 12th-13th centuries. It is about 50 kms south-south-west of Tokyo and a popular tourist destination which had been recommended to me by a former Australian government official who had spent many years in Japan.

Jogyo temple

Kamakura is an interesting city with numerous temples and shrines. One of these temples is the Jogyo Temple which is often visited by cancer and other patients who are seeking a cure or spiritual comfort. It is not marked on the official tourist-type maps and therefore one of my Japanese friends has identified its location on the accompanying excerpt from a map reproduced below. It is close to the Anyoin Temple.



In comparison with other shrines and temples in Kamakura it is not particularly large. Inside we met the Chief Priest, a Buddhist nun, and another woman with whom we shared tea.



   
There was a bell affixed to a rope at the entrance which I was encouraged to ring. One of the first things I noticed in the temple were origami paper cranes, all linked together, hanging from the ceiling. I was told that these had been made by cancer patients. They are called a Senbazbru and consist of 1000 paper cranes. The belief is that through constructing this collection or giving it to someone your wish will come true.

 


I was immediately reminded of the "Cranes for Brains Day" which the Sydney-based Cure for Life Foundation organises to raise funds for brain tumour research. They encourage Australian schoolchildren to make paper cranes and to compete to make the largest number, with the children being sponsored.

"Double power"

My hosts told me of an occasion when they brought a brain tumour patient in a wheelchair to this temple and placed his scheduled dose of temozolomide (Temodar/Temodal) on the altar pictured behind me in the photo below and prayed.



They said that he then took his chemotherapy and was able to get out of his wheelchair. They commented with a wry smile "double power" !

On another altar were dozens of white ceramic foxes with a red kerchief around their throat. These are said to provide a protective force.



The role of faith and hope

This visit raised the question of the role of faith in dealing with a terminal illness. I believe it can play a very important role, particularly if the patient and caregiver are troubled by the nature of the disease and the likely prognosis for a malignant primary brain tumour and their own internal resources are insufficient to give them the strength to travel the journey alone.

On another purely private website recording my late wife's journey with her brain tumour we included a non-denominational prayer that had been given to us at Canberra Hospital and which we had found useful. Over the years I have received several hundred emails from brain tumour patients and caregivers all over the world who have found that prayer to be a comfort, particularly in emergency situations when the path ahead is unclear and you are in a state of despair with your courage shattered. It reads:

A PRAYER FOR TODAY

Every day I need you Lord, but this day specially. I need some extra strength to face whatever is to be ... This day more than any day I need to feel You near - to fortify my courage and to overcome my fear. By myself I cannot meet the challenge of the hour. There are times when human creatures need a higher Power - to help them bear what must be borne. And so, dear Lord, I pray - hold on to my trembling hand and be with me today.

Hope and faith are useful in travelling this journey, which is not to say that a person without these two attitudes is inevitably handicapped in any way. For some people the diagnosis can lead them to a strengthend faith, or the discovery of a faith they did not know existed. For other people the opposite can be true. One person has told me: "I became very angry with God and felt totally abandoned and betrayed. I guess an event like a brain tumour diagnosis can go either way -
strengthening faith that is already there or smashing it to pieces."

As a Christian it was extremely interesting to learn of the role that the Jogyo Temple plays in providing comfort and in reinforcing the Buddhist faith of cancer patients, including brain tumour patients, and caregivers in Japan. I am grateful to my hosts for taking me to visit a place which is very special to them.

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