You’ve gotten a cancer diagnosis. You’ve selected an oncologist as your partner, working toward “No Evidence of Disease,” or NED (NED is every cancer patient’s very best friend). Your and your oncologist are working up a treatment plan, and you want to talk about clinical trials as part of that plan. Should you kick off that discussion, or wait until your onc brings it up?
YES, definitely bring up clinical trials yourself, if your oncologist hasn’t started that conversation. If you’re not sure how to kick off that discussion, here are some tips.
- “Just do it.” Lace up your mental Nikes, and just ask the question. Have some resource links handy at your next oncology team visit, or start the conversation before the visit via your onc’s patient portal. Start with the information on the Patient Empowerment Network’s Health Centers and Programs hub, take a dive into gov, or check out the American Society of Clinical Oncology’s Cancer.Net trials site.
- There’s an article in the Journal of Oncology Practice, “Identifying and Selecting a Clinical Trial for Your Practice,” that talks clinicians through the process of selecting clinical trials for their oncology practice. Reading through that can help you craft some great questions, and open a productive conversation with your treatment team about clinical trials for your cancer.
- The National Institutes of Health has a great tip-sheet for oncologists on how to talk to their patients about clinical trials. You can use that to frame the conversation you’d like to have with your own oncologist about your clinical trial options. I’ve often found that reading articles and tip-sheets aimed at the clinical side of the equation have helped me accelerate discussions with my own clinical teams about treatment options, for cancer and for other medical conditions.
When you’re dealing with a cancer diagnosis, you want to have all your options on the table, and make the most informed decisions possible. Opening up a dialogue with your oncology team about clinical trials early in the treatment process will give you the information you need for those “most informed decisions.”
Another reason to open those discussions early is to gauge your oncologist’s response to shared decision making, and participatory medicine. If your oncologist doesn’t welcome self-advocacy on your part, it’s better to know early in the treatment process so you can shift to another, more participatory practice.
You are the focus of your cancer treatment team’s work. Lead the discussions, share your perspective, and participate fully in your treatment planning. Opening the discussing of clinical trials is a great way to get your team on your page about treatment and outcome preferences, and to unlock the power of precision medicine.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.