American Association of Cancer Researchers Conference—April 1 –5, 2000 I was privileged to attend the AACR conference in San Francisco. This is a report of my experiences at the conference. You will not find in this summary a cure for ovarian cancer or even a list of clinical trials. It will explain the conference and what is going on in basic scientific research in a general way. My attendance at the conference was a matter of chance. I happened to be in a meeting at SHARE when there was some discussion of sending a representative. I let it be known that I was interested and available to go. The AACR had started a program last year to bring patients/advocates to the conference. Their purpose, from my prospective was three-fold. First to help disseminate information to the cancer community about what basic scientists were doing in cancer research, second to help dispel some of the mis-information that is promulgated by sound bites on TV and blurbs in magazines and newspapers about the latest cure for cancer having been discovered and third to partner with the advocacy community to increase pressure on the government to allocate more money for cancer research. During the course of the 5 days there were over 5000 papers presented to the scientific community. These were mostly in the form of posters. Scientists would have approximately a two-hour display during which time they would stand by their poster. Scientists would come by and review the information and ask questions. Watching the process was fascinating. I eavesdropped on many conversations that were about 10 feet above my head. When the scientist was free I would introduce myself as an ovarian cancer survivor. Each time I said that the person I was talking to would beam. They changed from the professional Dr. interested in discussing scientific data on an intellectual level into a human being glad to see someone who had recovered from cancer. Putting a face on the disease does indeed make them feel that their work is worthwhile. There were also some major presentations in large forums. During the opening day, the Public was allowed to attend all sessions. One of the keynote speakers was a woman diagnosed 3 years before with pancreatic cancer at the age of 36. The way she told it, she had an "old man’s" disease. So much of what she spoke about was similar to the stories we hear about ovarian. She experienced insurance problems while undergoing a clinical trial. Her entire message was very powerful and I believe she spoke for all patients regardless of the type of cancer. There was a panel on the news media and one on the Internet. Steve Dunn http://www.cancerguide.org was on the Internet panel. There was discussion of how misrepresentation of information is presented in both forums and what could be done to improve communication with the public. It became apparent to me that the scientific community is just as frustrated with the sound bites, which promise a cure for cancer. When the full story is told, they are reporting on preliminary results in a Petrie dish or in nude mice. The scientists explained that they were getting emails every time one of these stories broke and phone calls, which they responded to in order to clarify the information that the media reported. The most poignant example of this was a young scientist who had made a break through in the lab. Somehow some parents, of an 8-year-old child dying from cancer, had picked up the story and called him. He had an 8-year-old child too. He had to explain to the parents that this was not a therapy for their child and was years away from being one. He was heartbroken. He wanted to help them but just didn’t have the answer for them. His concern was how difficult this was for the parents, having their hopes raised and then dashed. I know we have all been in this situation and how angry it has made us. We need to interpret what the media tells us very, very carefully before getting too excited about what they are reporting and need to impress upon them however we can that they need to be much more careful in how they present this information. The entire experience of the conference was very upbeat and although I know it will be some time before some of the things I saw make their way into meaningfully therapy, prevention and diagnostic indicators for ovarian cancer, things are going forward. The interchange between the various cancer groups represented amongst the patient/advocates was also very helpful. Although we all have our own interests, the science that is being worked on at the basic level applies in many ways across all facets of the disease. Molecular biology, DNA repair, better understanding of the role nutrition plays in cancer development and treatment are not isolated to ovarian or breast or pancreatic cancer. As breakthroughs come in these areas, they will be applied across the diseases. Each advance that is made gives new knowledge to the broader problem of cancer. So if you hear that they have discovered a way to repair a genetic defect in colon cancer for instance, don’t be discouraged that they are not doing research in ovarian, because, the same methodology may be applicable to ovarian cancer. Full abstracts of all the papers presented are available at the AACR website. http://www.aacr.org These are very scientific however and may be difficult to interpret. Also remember that this is basic science looking for scientific principles, which eventually can lead to therapies. I want to close by telling you about the last morning at the conference. There were some sessions on nutrition, which interested me, but the gynecological cancers were holding a poster review session at the same time. I decided to go there. I had met scientists working on ovarian cancer at the various poster sessions, but this proved to be different. Out of 18 posters presented 16 were on ovarian cancer. The presenters were invited to speak to a group of their peers working on gynecological cancers. Each presenter gave a brief overview of their work and the other scientists in the room asked them questions. Some of the questions were about their methods, others about things they hadn’t looked at and might consider. It was a teaching tool and many of the presenters were young researchers. The last woman who presented was about my age (mid-50’s). She spoke very quickly as she had to leave to catch a plane. Her last two sentences were the only thing that didn’t go over my head. She said, this is a horrible disease and we have to catch it early. We shouldn’t have women dying from ovarian cancer. She said it with a great deal of passion. I asked the moderator if I could say a few words. He asked, "Who are you". A survivor, I answered. He immediately handed me the mike. I told them how excited I was to see the research they were doing. How important it was and how there were 1000 people I was going to tell about this. When I spoke of all of you, I became very choked up. It really surprised me at how emotional I became. They are working on all the things we need to know. Why we get the disease, how it can be detected early, how to determine who is platinol resistant so we don’t give drugs to people who they will not benefit, etc. The people in that room heard me speak for all of you. They know how important their research is to us. They will continue working in an area that up to now has been a stepchild. When I finished I went to the last speaker. She gave me a big hug. I asked her if she had had personal experience with the disease. From the way she spoke, it just seemed she must have had a family member or someone close who’d died. She said no. She’d been a pathologist for 20 years and felt that women’s health had not gotten enough research. The moderator then brought over a woman from the audience, a scientist in California, whose sister had just been diagnosed with ovarian cancer. She was looking for help for her sister, living in Australia. I told her about the list and gave her some other information. The scientist is being tested as well. Although I got much out of the conference, I truly felt that this was the reason I was there, to help this family connect with our community. Diane Remember we are NOT Doctors and have NO medical training. 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