This past year, I had the opportunity to participate in a project sponsored by the National Cancer Institute (NCI) and the American Society of Clinical Oncology (ASCO) focused on teams in cancer care. Our task was to research the science of how teams work together and to see if we could apply that to how teams work to treat cancer. Our team consisted of an expert in team science, as well as clinicians, nurses and social workers who see patients at a major comprehensive cancer center. My role was to offer the patient’s perspective.
At the heart of the exercise was a critical question: are patients and caregivers part of the team?
From my experience, I found that not only were my late husband Chris and I part of the team, we were the leaders of the team. We mapped out strategies, researched treatment options and enrolled in clinical trials. Our doctors were integral team members, advising us and walking with us through each step during his care. They made recommendations, but the decision to proceed with a treatment – or not – ultimately rested with us.
At a crucial point during Chris’s illness, we were given the option for a course of chemotherapy, a treatment that doesn’t work well on kidney cancer but can provide a very brief respite when tumors are growing rapidly. We chose not to do the treatment because of the toxicity, but also because we were concerned about our young daughters seeing their dad lose his hair and becoming very sick. It was our choice.
Something that helped give us the knowledge (and perhaps more importantly, the confidence) to lead our team was a healthcare community called SmartPatients, a forum where patients can share information about research and treatment, as well as the emotional aspects of managing a healthcare crisis. For Chris and me, the kidney cancer community on SmartPatients was a lifeline. Without it, we never would have known to ask for a CT scan instead of an X-ray; we never would have learned about the immunotherapy trial that took us to Dr. Hammers at Johns Hopkins. Even though we didn’t find a cure for Chris, in the end, we knew that we had left no stone unturned in our battle.
Every patient and caregiver has a different level of comfort in the role they play in their treatment path—and that’s ok. But every patient and caregiver deserves to be educated and to know their options. When you’re diagnosed with cancer, you’re not just part of the team. You are the center of the team. SmartPatients is about sharing information and treatment options for kidney cancer, and KCCure is about funding new research that kidney cancer patients can use and share. We’re on your team.
