Representing Cancer Survivors at the American Association for Cancer Research Annual Meeting, 2010

Recipe: Start with a vision that cancer researchers, with their medical educations, experiences, and dedication, and cancer survivors, with their own motivation, their journeys, and their courage, have important truths to share with each other. Add commitment by leaders of the American Association for Cancer Research to foster this vision with funds, caring staff, and attention by experts. Mix in enthusiastic participation - bringing the vision to life - by dedicated cancer survivors, representing many types of cancer. Invite them from diverse ethnic groups, from young adults to senior citizens, and from a number of nations throughout the world as well as the United States. Place these ingredients in the massive, two-city-block-long Walter E. Washington Convention Center in Washington, DC, filling it with 17,800 AACR cancer researchers and physicians from the United States as well as all over the world. Put me in the mix, representing the Virginia Prostate Cancer Coalition and loved ones, but also helping represent all cancer survivors. Insert in the oven for five days, from April 17-21, 2010, with the temperature on high from early each morning to late afternoon. Stir together with more than a dozen major presentation venues, hundreds of poster displays, and an enormous exhibit hall all going on simultaneously, and spilling over into dinners and receptions into the late evening. Include a series of illuminating presentations in laymen's language by experts, exclusively for the survivor group. Season with daily mentoring by dedicated leaders, researchers and physicians from the National Cancer Institute and the AACR. Finally, take out the finished product. Name it the 2010, 12th Anual AACR Scientist↔Survivor Program. Call it awesome!

My first awareness of the AACR was in 2004 when, over three years into surviving a challenging case of prostate cancer, I attended an FDA workshop on research endpoints for prostate cancer research - just another member of the interested public. However, I asked an audience question to the panel of assembled experts, and that may have been what suggested to Dr. Marge Foti that I was bold enough (crazy enough? ) to participate in the Scientist↔Survivor Program (SSP). Dr. Foti has been the Chief Executive Officer of the AACR for many years, and she invited me to apply. My being very active in prostate survivor education and advocacy circles no doubt helped, and my application survived the competitive selection process. You can participate up to three times, and this year was my third, though I'm hoping to come additional years as an SSP survivor mentor. All our expenses - including travel - are picked up by the AACR, though I was a cheap date this time, traveling from the suburbs of DC to downtown by taxi. One of my new SSP buddies made up for that, coming all the way from New Zealand! I joined thirty six other survivors or prominent advocates, a group reduced by two due to that Iceland volcano that prevented air travel from Sweden and Scotland .

We were supported by eight "advocate mentors" and twenty "faculty mentors," who were all professional cancer researchers and/or physicians. We were divided into six working groups with about a half dozen survivors/advocates each plus four to five advocate mentors and faculty. I count myself exceptionally fortunate that Dr. Danny Welsh was the faculty advisor for my group. Dr. Welsh, from the University of Alabama and one of the world's experts in cancer metastasis, played multiple leadership roles at this year's conference. Not only was he one of two co-chairmen of the Education Committee - the group deciding what key knowledge should be presented with special emphasis sessions and supporting book to the AACR, but he was also the chairperson of the closing plenary session. (Those are the featured sessions attended by thousands.) While most of us had at most one ribbon at the bottom of our badges (mine was blue and read "Scientist↔Survivor Program, 3rd Year Participant," which I wore with great pride), Dr. Welsh had about six, all different colors, declaring his various roles. Yet in our small group meetings and at lunch, there he was next to me, giving us tips about which sessions we might find most interesting, asking us about our SSP experiences, answering our technical questions, or giving me joking advice that it was okay to eat chicken with your fingers!

Prostate cancer was especially well represented in the 2010 AACR and SSP programs. In addition to five survivors, including one from Tanzania, there were two advocate mentors and Dr. Don Coffey of Johns Hopkins, on our SSP faculty - all of us concerned mainly with prostate cancer. Dr. Coffey is widely known, not only for his high impact prostate cancer research and leadership, but also for his engaging speaking. Imagine a person who evokes the reverence accorded George Washington yet also the friendly warmth of Andy Devine (right down to that down-home Tennessee twang). Dr. Coffey, a past president of the AACR and in extreme demand as a speaker, gave our small SSP group an insight-filled private talk on "What is Cancer." He also revealed to us the two most important pieces of equipment in a cancer laboratory: the eyes and the mind!

Looking beyond our SSP environment, the AACR conference itself included a number of talks and sessions on prostate cancer as well as 318 listings of poster presentations under six index headings starting with the word "prostate." Just one of the highlights was a very well attended talk, "Overcoming drug resistance: Lessons from prostate cancer," by Dr. Charles L. Sawyers, MD, of Memorial Sloan Kettering. He spoke about development of a new drug, known as MDV3100, for prostate cancer patients when the PSA is rising despite the absence of testosterone. It is clear that the drug is still years away from clinical use, assuming it is eventually approved by the FDA, but I thought the drug sounded very promising at its current stage of development. If successful, this would add an important additional option to the arsenal of pharmaceuticals for patients.

I also learned other valuable lessons beyond the field of prostate cancer. In my two previous SSP programs I had come away with a number of key insights plus an abundance of background information. For instance, I had come to realize that many cancers have common features, such as common signaling pathways of proteins and factors that promote or inhibit the cancer. There are also many common genetic aspects of the cancer environment. This theme was emphasized again this year; several times I heard speakers say that they day was coming when there would be physicians expert in these pathways who would examine and guide us, rather than spests in this cancer or that one. I had previously come to appreciate that the genetic environment for the cancer was vital, but so was the "epigenetic environment" - that's the setting that has so much to do with whether genes are switched on or off. This year I could see that focus continuing, backed by an abundance of ongoing research.

However, if I had to choose just one insight from the 2010 SSP experience, it would be this: cancer researchers now see that it is not enough just to go after a single gene or protein to knock off the cancer. Nor is it usually enough to disable just one complex pathway of genes, proteins and other factors that affect the cancer. Rather, most often, the cancer thrives because it involves a complicated network of pathways, and effective therapy must therefore do enough to disable the network, which often requires an approach combining several kinds of therapy at once! That insight seemed to me to echo again and again in sessions I attended, and other survivors sensed that too.

Such complexity is daunting, but let's up the ante. As Dr. Welsh and others emphasized, our cancers are not stationary targets - they continue to mutate! That means that a therapy that might have worked fine at one point will not be effective at another point. Therefore, we need to strive to recognize the personal characteristics of a patient's cancer at a certain stage in its development and deliver therapy that will match the key circumstances at that time.

On the other hand, while cancer is complicated, our combined human counter attack has been long-term and vigorous. The AACR celebrated the century anniversary of its annual meeting last year, and over the years many hundreds of thousands of researchers, physicians, and patients have been enlisted in the War on Cancer. They (we) are making a difference. I was surprised to learn that, out of the chaotic-seeming maze of signaling pathways that affect cancers, it is becoming clear that there are only about a dozen major pathways - a number you can get your mind around. I even learned their names and have large charts of their elements that I picked up for free in the Exhibit Hall. An abundance of research projects are aimed at influencing that network of pathways.

I've got to add a note from my own experience here. My sole therapy has been intermittent triple hormonal blockade (androgen deprivation) therapy (Lupron, Casodex, and finasteride, with a bisphosphonate in support as well as a supportive nutritional program). That is exactly the kind of combined approach against a cancer network that the visionary experts on hormonal therapy have been using for a decade, achieving remarkable results. That way the cancer cannot switch to another route when it senses that it's main pathway is blocked. (One of the AACR speakers likened cancer networks to the map of the District of Columbia's Metro subway system; the cancer acts like us: if one station is closed or a line blocked, we sense that and switch to another route.) Dr. Charles "Snuffy" Myers, MD, known to many of us as a leading prostate cancer medical oncology spest, has specifically compared triple blockade therapy to the kind of combined therapy that transformed testicular cancer from a death sentence to a disease with an extremely high cure rate. (By the way, earlier in his career, Dr. Myers was chief of the pharmaceutical development branch at the National Institutes of Health, and in that role he would give presentations to the AACR's annual conference.) I'm really glad to see that the pioneers I've been following will soon have company in launching combined assaults on cancer networks.

The advanced technology now used by researchers is breath-taking. These days we take for granted the amazing computing power that can process mind-boggling volumes of complex data as easily as it enables researchers to collaborate in small groups to very large teams from points all over the earth. Think about it though; that's quite amazing stuff! On another front, Dr. Anna Barker, Deputy Director of the National Cancer Institute, and a key supporter of the SSP over the years, spoke to us several times about the Human Genome Project and a newer project, the Cancer Genome Atlas. The set of genes affecting brain cancer has already been mapped, followed by a huge boost in the number of brain cancer researchers. The Atlas project aims to similarly determine the sets of gene alterations affecting each cancer. Can you imagine what a breakthrough that will be?! (Moreover, costs are plunging: it cost around $100 million to determine an individual's own genome (his or her full set of genes) just three to five years ago, but now the cost has fallen to around $50,000! That's still too pricey to pick up a full genome kit on your way home from the drug store, but that day is probably coming in the fairly near future. You may remember that just this year Walgreen's attempted to make kits of gene tests available.)

As impressive as these technologies were, the one that really stunned me was imaging cancer in real time. I heard and read a lot about that, but I actually saw a video with my own eyes. The video was in the Exhibit Hall, and I could see a single cancer cell moving - not a whole tumor but a single cancer cell, with a moving single macrophage, an element of the human immune system, apparently chasing it. Wow! Now keep in mind that such imaging is still done in a lab and animal environment rather than for actual human patients, as I understand it, but it is so clear that the day of practical human imaging cannot be far off!

You might feel sure that all this wonder would be well covered by the media. There were many reporters in attendance, but it still amazes me how such vital news is regularly pre-empted by news about the latest celebrity misbehavior, political posturing, corporate corruption, or the most recent bank heist. I read the Washington Post daily, and there was only one report of developments from the conference that I saw; unfortunately, the reporter did not identify the conference as the source of his information. One of my objectives this year was to communicate to conference leaders and attendees that media coverage of prostate cancer was lousy. I was prepared with a single page handout listing five recent important stories on prostate cancer that had been missed by the media. In fact, the list included three items illustrating plunging costs of treating prostate cancer patients, stories that might have figured in the national debate over health care reform had they received adequate media coverage. I was able to give the list to Dr. Foti, the CEO of the AACR, and Dr. Anna Barker, the Deputy Director of the NCI.

I was also was able to make the point about the media in the first session I attended, part of the AACR "educational program". The set of related talks focused on clinical trial design in the age of personalized medicine. It was held on Saturday morning at 8 AM, at the launch of the annual conference, and well before our SSP program formally commenced at noon. There was always an opportunity for audience questions after each talk. I sensed a lull, stood up at the mike, and asked what could be done about media inattention to informing potential clinical trial patients that levels of risk in prevention trials are usually relatively quite low, a point made by the speaker. I used my list about prostate cancer as examples of general media inattention to important medical developments. My question was well received, with the speaker approaching and thanking me after the session adjourned. I mention this as just one example of the value that survivors bring to the AACR annual conference.

As the closing hour for the conference was nearing, I happened to be near the outgoing president of the AACR, Dr. Tyler Jacks, PhD, from MIT. I introduced myself and thanked him for his work over the past year in leading the AACR. I said I had a real sense this year that we were seeing the light at the end of the tunnel in the long war against cancer. Dr. Jacks shared the thought but used a different analogy. He said that for him it was like watching a chick hatch from the egg. The chick hadn't emerged yet, but we could see the cracks in the shell. I left the conference with a profound sense of optimism!

Well, if you've stuck with me this long, I thank you, and I hope you have benefited. I've tried my best to communicate the atmosphere of the meeting, but words fail. What word expresses an odd combination of excitement and yet serenity? What phrase covers the knowledge equivalent of trying to drink from a fire hose all day while being pampered with a resort style hotel (Grand Hyatt, DC) and exclusive SSP lounge/refreshment center?

I need to wrap this up because I'll then be able to get the publications that my fellow SSP members have made about their experiences. I'll learn what the eight year survivor of pancreatic cancer thought, what our college student learned about his untimely and rare cancer, what lessons my fellow prostate cancer buddies found, and what Jane Perlmutter learned (the noted breast cancer survivor and advocate). I want to know if our MD from Hungary (a breast cancer survivor), and our representative from Jordan (working to build a leading cancer research center in his country), got home okay. I'm curious how my working group friend's young son enjoyed the hotel environment. I'm looking forward to learning how my many new colleagues are applying what they learned. I would like to get some additional answers about how metastasis works from my new mentor, Dr. Walsh.

If you want your own mini version of the conference, the AACR has many publications available, including some designed especially for survivors and advocates with no enrolled medical training, like me. Check out their website at www.aacr.org, especially the button for survivors in the center top of the home page. The main obstacle will be the medical jargon, but some of the publications are remarkably clear and understandable even if you have scant medical background except as a patient. You can view webcasts of many key talks (for two years from this mid-April 2010 conference). You can also view articles from the Education Book; that's the document containing a selection of key articles from the talks and articles the AACR considers very important knowledge to enable its members to keep up with the field. You can also view descriptions of all the posters presented at the conference.

The SSP program is a wonderful opportunity for cancer survivor activists (advocates, educators), with no enrolled medical education required. Recruitment is done in the fall, around October or November, for the program the following April. Essentially the only requirements in 2010 were to participate fully in the five day program and then follow up with a written report to a newsletter, website, or listserv.

When I finished my two previous reports about the AACR's Scientist↔Survivor Program, I felt like Marco Polo must have felt when critics challenged that he was exaggerating, and I feel that way again. Marco Polo's reply to his critics was that he had not told the half of it. Marco and I have that in common.

Take care,

Jim