My Journey of Advocacy from Lung Cancer to General Cancer
Last updated: June 2022
I have been advocating for cancer for four years and have survived for lung cancer closed to sever years. Looking back at my advocating journey, I’ve come a long way, and I would like to share some of my experiences. Hopefully, it may be helpful when you make your decisions.
Advocacy of lung cancer
At the beginning of my advocacy, I was only interested in Stage 4 ROS1+ lung cancer because of my diagnosis. So I spent all the time reading the papers, attending webinars and conferences, getting to know the researchers and advocates online and in person, everything related to ROS1+ lung cancer. I found that knowing the researchers and advocates is extremely important. They gave me hope and encouragement.
After two years or so, I got to know the advocates from ALK+, EGFR mutation lung cancer patients. I’ve been inspired and intrigued to fundraise and organize patient-initiated and patient-centered research projects during this period. It was a very eye-opening time. I organized fundraising events for $25,000 USA and $19,000 CND, but what interested me was the patients’ centered research.
The first time I heard about patient-centered research, I had a lot of questions like why and how. The answers to these questions seemed to be evident to everybody except me. I read articles and papers from the websites and academic journals, especially the articles from Cancer Research UK.1 I was excited to realize that patient-centered research was somehow like the new “industrial revolution” in the 19th century, and the future of medicine relies on it. From that moment on, I found all the opportunities to be involved and engaged in the patients’ centered research.
Advocacy of general cancer
I got into the advocacy for general cancer after a semi-accident last year. Firstly, the breast cancer patients advocated unwaveringly and left a deep impression on me. At the same time, I took part in the first meeting of general cancer by the Advocate Collaborative, a diverse and global group of cancer patients, research, and policy advocates.2 I became a part of the ASCO Annual Conference in 2021. I was amazed to know so many knowledgeable, experienced, and energetic advocates. It made me feel again that I was not alone in advocacy. I first felt so when I attended Hope Summit by the International Survivorship of Lung Cancer Conference by LUNGevity.3 Later, I also participated in the meetings for the advocacy of general cancer - Biomarker Collaborative, a community of biomarker groups dedicated to helping patients with biomarkers live everyday lives.4
From these different patient groups, I saw patients are the driving force and active members of their care teams. They educate themselves about their diseases and their treatment options. Patients are driving research in ways unprecedented in medical history. They form partnerships with researchers, clinicians, and corporations to further research.
From the research side, I saw that cancer biology and translational research of different cancer have much in common, so the breakthrough in one cancer area will bring new treatments to other cancer areas. In addition, I have seen that the collaboration of cancer researchers and doctors is imperative.
Reviewing cancer research grants
After being involved in the general cancer groups, I got chances in three Canadian cancer organizations to review the research grants last year. At the exact time, I’m the grant reviewer for the ASCO Conquer Cancer Foundation, 2021-2023. I became familiar with different research areas and the cancer patient advocacy landscape in the USA and Canada through these reviews. They are fascinating to me and show future cancer research.
Currently, I’m involved in a major Canadian cancer organization to develop an upcoming research grant with a large amount of funding. Although the cancer organizations have just initiated to involve and engage the patients in the research in Canada, they have made amazing progress. My experiences in the research grant are instrumental in such a development.
Cooperation and collaboration across cancers
I believe that the patients’ involvement and engagement will accelerate the cancer research unprecedented in my cancer journey. When I started advocating, I only cared about my type of cancer. However, after understanding different cancer, the cooperation and collaboration among the researchers and patients of varying cancer are ever important. From my advocacy experience, I genuinely believe that we will conquer cancer soon.
Beside manner matters! What has your experience been?