Reflections and Evolving
by Mary Kay Dauria
Who would have thought I would be participating as a patient advocate when I started my cancer journey 13 years ago at MD Anderson Cancer Center.
The day started early on April 5 as I boarded a full plane from Houston to Washington, D.C. I became totally humbled. The plane was filled with researchers traveling to the American Association for Cancer Research (AACR) Annual Meeting 2013. The poster tubes were my first hint. Conversations with other passengers confirmed my impression.
I was even more humbled when I arrived in Washington, D.C., as 18,000 of the brightest cancer researchers from around the world gathered together to share findings on cancer research and learn from each other. It was possible that someone in this group could hold the key research that will change our collective medical destiny.
For three days I attended scientific sessions about nanotechnology, genotypes, micro-environments and immunology. I became well versed in the 150 year history of cancer research and learned about the multiyear long U.S. process to bring hopeful therapies to patients as well as the new diagnostic technology and tools in development. Although overwhelming, it was exciting to discover the myriad of information and unique research pathways that are in progress.
I had the opportunity to share a patient’s perspective on quality of life issues. Through several encounters with scientists, I learned that the patient perspective IS valued and IS appreciated. It is hope-filled.
Besides researchers and health care professionals, patient advocates from around the world also attended the conference. Advocates attend these conferences to express their passion in finding a cure; establish support programs to assist patients in need; or lobby for cancer research funding and some advocates share the title of researcher and survivor. Again, I was humbled. Cancer abuses us and changes us in many ways; it often brings out the best in us.
This experience triggered thoughts about opportunities to better serve the cancer community; doing research, talking with a newly diagnosed patient, volunteering at a survivor event, sharing with a family member or friend, smiling at those in the waiting room, or allowing our community to serve us when we need it. We all have opportunities to serve the cancer community as a researcher, survivor, caregiver, friend or advocate. We all have a role and those roles continue to evolve over time. Each role is connected and unique.
Heading back to Houston as the conference ended, I began recapping and synthesizing what I learned (or better said, understood) from five days of seminars and symposiums. I was 1 of 18,000 attendees. Although my days were full, I only attended a few of the hundreds of seminars that were available. It is mind boggling to be exposed to all of the research and investigations going on; so many exciting movements in cancer research and technology.
The biggest news for me is that there is great change and HOPE in the future. A new focus is evident.
Some of my learning included:
Metastatic cells begin circulating and setting up residence long before a tumor is evident at the primary cancer sites. At first thought, it seemed depressing but the myriad of possibilities opened up. There is a great deal of research being done on individualized therapy – using our own cells to produce unique treatments for each one of us. The research I found most fascinating included utilizing our own immune systems to produce a cure (and maybe prevention) that is unique to each individual.
The new trend in research seems to be moving toward a larger focus to discover root causes of tumors that cross various cancer sites.
I did not anticipate I would utilize my newfound knowledge so soon after returning home. I ran into a co-worker in a hallway and a simple “How are you?” opened up a door to utilize this information. She told me that a small mass had been discovered in her chest. It was suspected to be cancer and she was scheduled to have it removed by a general surgeon. She was frightened.
She did not know I was a survivor, nor did she know I was actively involved in the cancer community. After convincing her to have a second opinion, as English was not her first language, she asked me to accompany her to many appointments over the next 10 days. After testing I sat with her as the oncologist explained to her she had a malignant mass between her aortic and pulmonary heart valves of unknown origin. He launched into a very scientific explanation. It was exactly what I had learned at the AACR conference. I began to interpret the scientific jargon and explain the process of malignant cells traveling in the body. My further knowledge of chemotherapy prior to surgery helped her accept the new protocol offered from the oncologist.
Another gigantic trend I learned more about at the AACR conference is genetic sequencing. It simply means scientists can map our unique genetic profile from a tissue sample. Scientists are still unsure what to do with the information captured through genetic sequencing. However, in the future this information could be paired with individualized therapies to produce prevention vaccines for all types of illnesses. The largest challenge is that data storage requirements are so massive it presents new challenges for storage. No repositories exist large enough to house the information. Although it is becoming more affordable, insurance companies are not covering the test.
I met so many scientists from around the globe and a spirit of cooperative-competition seems to be alive: Scientists sharing discoveries, cooperative efforts and recognition.
I’m still unsure how to best utilize all of this new knowledge but I continue with my normal cancer-related activities. As a patient advocate, I have helped plan conferences, assisted with developing programs for survivors programs, evaluated cancer research grant applications, served on committees to raise funds, and sat at the bedside of newfound friends.
In May, Susan’s Rally asked me to evaluate a new health initiative that was forming and a new advocate road began opening. Susan’s Rally assisted health fairs in 2012 that provided free mammograms and STD testing and the new initiative scheduled for fall 2013 takes this concept much further. The premier cancer facilities in Houston are working cooperatively to present a much larger initiative with “state of the art” technology, able to provide Pap results in two hours, in addition to STD testing, Mammograms, and HPV education for underserved populations. I am also on the planning committee and can better understand the scientific discussions with my newfound knowledge acquired at AACR Annual Meeting. So my role as a patient advocate is evolving again, now in planning services for other patients alongside some of those brightest minds. This was just another stop on the journey, with the road continuing on.
Mary Kay Dauria is 12-year cancer survivor who is an active patient advocate. She has assisted with development of community initiatives to support early detection, patient support , education, and survivor programs. In addition she provides a patient perspective on quality of life issues during medical research grant evaluation. Dauria participated in the Scientist<->Survivor Program at the AACR Annual Meeting in 2013.