My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Saturday, April 18, 2009

AACR Annual Meeting Day #1

I spent today with the other advocates involved in the AACR's Scientist-Survivor Program. The survivors and advocates, about 30 of us altogether, are from all over the US and the world. There are Scientist-Survivor Advocates in the program from Jordan, Zimbabwe, Poland, Sweden and Canada along with advocates from all over the USA. All of the advocates have had their lives affected by cancer and have gone on to do great things on so many levels. I feel I have done very little in comparison; the other advocates have done so many things that have made such a difference and have contributed so much to those affected by cancer. They so inspire me. I hope to grow to their levels of advocacy.

The Scientist-Survivor Program was the brainchild of scientist Anna Barker, the deputy director of the National Cancer Institute. The program seeks to help those of us who advocate for others learn what is new in the world of cancer research so that we can share what we learn with those in our respective communities. What we learn from the scientists and what they learn from us will help us to form mutually supportive relationships that will in the end benefit us all.

There were several scientists I met last year who came to spend time with us today and who gave us hugs, sat at our tables and joked with us. Prior to my involvement in this program, they wouldn't have been real people to me, just first initials and last names on research journal articles I might have read as a medical professional and patient. Now I know better, they are real people who care about those of us with cancer and who want to help us defeat our disease. Now they are my heros.

Maybe some of our success stories will inspire the scientists to keep doing the good work they are doing. The comment was made that cancer research is difficult work, that the work involves 98% failure and 2% success. Cancer is a tough and complex disease. I wonder how many of us would stay with a job where we only felt we succeeded at what we were doing 2% of the time. And what if most of our work and even our successes were not recognized by the world at large? What if we had to beg for the funding that would allow us to continue to do our job? I'm sure we would become discouraged. At least as a nurse, even if my patients die, families thank me for my caring. I get personal positive feedback for my work, at least sometimes.
More than 2% of the time.

But those of us who are long-term survivors have survived as a result of the scientists work. The only chance the world has of ever seeing an end to cancer is the scientists continued dedication to the field. I am an almost 8 year survivor of an "untreatable" cancer, another advocate I spent time with today is a 5 1/2 year survivor of pancreatic cancer. We have survived as a result of the research that led to the treatments we received.

I believe, as the SSP Program does, that scientists and advocates can learn from each other and form mutually supportive relationships that will result in newer and better treatments, and in the end a cure for cancer.

Anna Barker did a wonderful presentation for our group today, I truly admire her. She lost most of her family to cancer and as a scientist has dedicated her life to ending cancer in her work with the National Cancer Institute. She gave us some mind-numbing statistics. Cancer results in $213 billion dollars a year in US health care costs. Currently 560,000 people in the US die of cancer ever year. As cancer rates increase as the baby boomers age, cancer will result in 10.3 million deaths every year. As a country our cancer death rate is expected to double by the year 2020.

The really sobering statistic, though, is that the overall number of deaths from cancer has not decreased since 1950. Our five year survival rates have increased, so people are living longer after a cancer diagnosis, but the cancer death rate per 100,000 population is the same now as it was in 1950. We've reduced the overall death rate from cardiac and other causes, but not cancer. I've always been afraid that when people hear the numbers indicating increased 5 year cancer survival they will feel we are winning the battle. The battle is a long way from being won.

I think people came to associate "5 year survival" with "cure"; that is not the case. Many are living prolonged lives with cancer, but in the end are not surviving their cancer. We still have a lot of work to do. We still need to devote a lot of resources to cancer research. The good news is that there are many new ground-breaking research findings, and new out-of-the box areas of cancer research, which combined with new technology and communication abilities have the potential to truly change the cancer statistics in upcoming years. Nanotechnology, cancer genomics, angiogenesis studies, and proteomics are just some of the new areas of cancer research.

Anna Barker had a slide of her favorite quote:

"The world created today, as a result of our thinking thus far, has problems that cannot be solved by thinking the way we thought when we created them." Albert Einstein

We are thinking differently now, and I think we will see great progress and success in the fight against cancer soon. I will spend all day tomorrow listening to scientific presentations discussing new discoveries and hope to share some of them with you tomorrow.

1 comment:

lttdns said...

If you get a minute, visit www.couragetojump.com My freind recently passed away from ALL. She was a inspirational blogger and gave so much courage to so many with cancer. Her cause was LLS and so, now, that is mine. We are organizing a charity jump (that's right! out of an airplane) to honor the courage she found to fight this disease. I encourage everyone who's interested to register for the site to get updates and spread the word (and participate if you want - its a national event). If just one out of every ten people found a way to get people involved, we would be well on our way to stomping out this terrible disease all together!