Report from VHL Symposium

Kochi, Japan, May 20-23, 2004
Report by Joyce Graff

Dr. Shuin

Enjoying a box lunch

The conference in Kochi was wonderful. The city of Kochi is very beautiful, and our hosts treated us to the best of Japanese hospitality.

Thursday was devoted to basic science, and the researchers shared some remarkable advances in understanding what happens in the cell. VHL is at the cross-roads of all the angiogenic processes in all cancers, and is now implicated also in colon cancer in the general population. People with VHL are not at higher risk for colon cancer, but when a colon cancer starts in anyone, the tumor shows that there has been damage to the VHL gene that unleashes the growth of the tumor. It’s good for us in that lots of pharmaceutical companies are focused on VHL research, trying to learn how to control the levels of VHL, or to normalize the consequences of too little VHL protein in the cell.

Friday we heard reports on new learning from genotype/phenotype alignment and much about the amazing new computer-assisted imaging and surgical techniques. Much of the technology comes from Japan, and there were wonderful demonstrations of laparoscopic techniques and microsurgery facilities to improve the outcomes of brain and spinal surgery.

Dr. Lonser from NIH presented the work his team has done on endolymphatic sac tumors, understanding better how they grow and at what point one should move to surgery, to prevent hearing loss.

There is also mounting evidence from many parts of the world that it is very important to monitor the central nervous system before symptoms occur, and make sure to operate on a tumor before it becomes too advanced. Dr. Lonser said that most of the tumors he operates on these days are under 3 cm.

Saturday was focused on the families, most of whom were not able to get off work until then. We had translation services from the university, and were able to have very good interaction with them. The families here have not had the benefit of the kinds of meetings we have run in the U.S., so they do not yet understand how best to manage their health. Dr. Shuin is encouraging the Japanese VHL Family Alliance, headed by M. Shinkai, President of the Japanese VHLFA. So far they have a website and online discussion in Japanese.

We had at least two dozen Japanese doctors in the room through the family question and answer session. There was a panel of eight physicians from all over the world responding to questions, and others listening carefully, learning what the Japanese families are thinking and worrying about. Due to a technical problem, the university translator could only hear a few of the panel members and not the families. One of the family members, Bungo K., did an outstanding job of on-the-spot translation to and from Japanese to facilitate the conversation.

After the meeting some families had to go quickly to meet their buses or trains, but 16 of us stayed together and had dinner at a Japanese restaurant, sitting on cushions on tatami mats at a low table, served by women in kimonos, with delicious food on large platters along the table. Three of the people there were able to help with the language, and we had a lively and delightful conversation.

People are people, all over the world. The concerns they expressed are the same concerns I have heard all over the world. We were two from Germany, one from Australia, one from U.S., and 12 Japanese. There are some cultural differences, due to the different health care system and medical culture, and to the societal pressures in this country, but with those flavor variations it was a conversation that might have occurred in any other country.

We felt that we made some strong bonds with the local families, and will continue to share ideas with them. They learned the benefits of being together. People are always shy in the beginning to attend meetings, not knowing what the experience will be like. This was a great experience for all. We all have the same goal: to live well with VHL and manage our health. We look forward to learning from them and with them as their local organization grows.