Dusty Donaldson is a 10-year lung cancer survivor and founder of LiveLung and the Dusty Joy Foundation, a 501(c)(3) dedicated to advancing lung cancer awareness, early detection, and compassion for people touched by lung cancer. She is also co-leader of the Lung Cancer Action Network (LungCAN), a coalition of nonprofits focused on serving the lung cancer community.
I was diagnosed with lung cancer a little more than 10 years ago. In that time, lung cancer has claimed more than 1.5 million lives in the United States. Frankly, because most lung cancer patients die within a year of their diagnosis, I did not expect to live as long as I have. Only 17% survive 5 years. Yet—10 years later—here I am.
After my diagnosis, I quickly learned about the incredibly high mortality rate of lung cancer, the lack of research funding and screening protocols, and the stigma associated with this disease. I quickly recognized the need for lung cancer advocates and became one virtually overnight.
I first volunteered for local organizations that were instrumental in my care and treatment. Then, I reached out to national nonprofits that focused specifically on lung cancer. With their support, I found my voice as a patient advocate. In 2010, I founded the Dusty Joy Foundation to advance lung cancer awareness, early detection, and compassion for people impacted by lung cancer. I also serve as co-chair of the Lung Cancer Action Network (LungCAN), an association of 20-plus nonprofits serving the lung cancer community.
I am one of more than 14 million cancer survivors in the United States. After surviving cancer, many people feel stuck in limbo, struggling with the physical and psychological aftereffects of treatment, fearing recurrence, dealing with the financial consequences of treatment, and facing challenges at work. For cancer survivors, the future seems more uncertain than when they were first diagnosed.
As a patient advocate, I was very grateful to receive support from the Conquer Cancer Foundation to attend the 2016 Cancer Survivorship Symposium. This meeting was co-sponsored by the American Academy of Family Physicians, American College of Physicians, and American Society of Clinical Oncology. The symposium brought together about 800 people—primary care providers, oncologists, advocates, and others—to help create a shared approach to survivorship care and better serve the growing cancer survivor population.
The opening session provided an overview of the Institute of Medicine’s 2005 report, “From Cancer Patient to Cancer Survivor: Lost in Transition.” This report recommends that every cancer patient receive a survivorship care plan. My biggest takeaway from the entire symposium was the importance of a meaningful, robust survivorship care plan. An effective survivorship care plan should be developed collaboratively by the patient, primary care provider, and a member of the oncology team.
Survivorship care plans are becoming a requirement for people with cancer. However, much of the symposium discussions centered less on meeting minimum requirements and more on including patient-centered tips and health advice, as well as how to develop these plans with maximum administrative efficiency. Speakers and exhibitors focused on technical issues surrounding plans, such as technology, customization, and billing. Panelists and participants discussed practical tips for developing an efficient process for administering plans.
It was inspiring to hear speakers share their successes and lessons learned. I sensed a genuine interest in creating customized patient-focused survivorship plans that would enable patients to live healthy, active, empowered lives. Each patient needs a customized plan. As one speaker wisely said, “one-size-fits-all fits no one.”
Basic survivorship care plans include the following:
- Summary of cancer diagnosis and treatment.
- Recommendations for specific action to monitor for recurrence and secondary cancers.
- Information about possible long-term late effects of treatment.
- Advice for living a healthy lifestyle.
- Resources for employment or insurance issues and psychological support services.
As a lung cancer survivor and patient advocate, I am pleased to know that these survivorship plans will be a part of survivor care in the very near future. Perhaps, more importantly, survivors can become their own best advocate by participating in the process or by taking the first step. Several free survivorship care plans are available online.
I also appreciated what it means that the symposium was solely focused on the topic of survivorship. It wasn’t just another topic out of hundreds. This symposium was particularly meaningful to me because LungCAN and other participating organizations are focusing more and more on survivorship AND collaborative initiatives. Collaboration is essential to making substantive changes in the world.