As you go through cancer treatment, you might be presented with the opportunity to participate in a clinical trial. These studies often lead to improvements in treatment and overall medical care, but signing up to take part in one isn’t necessarily an easy decision.
If fear is the only thing holding you back from participating in a trial, first of all, know that the feeling is totally normal. “If a patient considering a clinical trial didn’t have fears about safety, side effects, and the feeling of loss of control, I’d be worried,” says Andrea Tufano-Sugarman, MD, a gynecological medical oncologist at Memorial Sloan Kettering Cancer Center in Commack, New York. “Those fears are very, very normal.”
Know also that you don’t have to go through the process alone. There are support systems in place to help you feel more comfortable throughout the trial, plus other strategies to help you cope with any lingering worries.
Factors to Consider for Clinical Trials
Because clinical trials often grant access to novel treatments, it may seem like a no-brainer to participate if you’re able — but there’s a lot to consider when you’re weighing whether to take part in a trial. “Clinical trials can increase financial and time burden for patients who need to travel a distance to get to the trial,” explains Shanthi Sivendran, MD, senior vice president for cancer care support at the American Cancer Society (ACS). The new treatment may have unknown side effects; it may not help your individual cancer, but may help others, she explains. And in randomized clinical trials, you won’t have a choice on which treatment you get.
This lack of choice, on top of the possibility that you might receive a placebo instead of the actual drug, can increase uncertainty and fear. But there are safeguards in place to ensure all participants receive the standard of care. For one, it is now extremely rare to receive a placebo in a clinical trial, and even rarer to receive a placebo as a stand-alone treatment.
“Clinical trials have built-in safety measures and ongoing safety reviews that happen, and when you're in a trial, you’re often monitored more closely than if you weren’t in a trial, due to checks and balances in the system,” says Dr. Tufano-Sugarman.
How to Ease Fear and Prepare for a Cancer Clinical Trial
Ask All the Questions You Have
Just as you likely had many questions when you were first diagnosed with cancer, taking part in a trial is a new experience with its own set of unknowns. Don’t be afraid to discuss anything you’re concerned or unclear about with your care team. “Being as informed as possible about your own cancer and clinical trial can help you cope with worries,” says Dr. Sivendran.
Be sure to ask logistical questions, as well, about where you’ll be treated and the time involved. “It’s very important to learn all these details upfront,” says Tufano-Sugarman. Some treatments may require overnight hospital stays or travel, so ask about the time and cost involved so you can decide if the trial is the right fit for you. (And be sure to ask about what reimbursement may be available, as many clinical trials cover travel and lodging expenses.)
To help answer questions more specific to the trial you’re considering, read your informed consent statement closely. An informed consent is “a written-out statement of the known risks, some unknown risks, and it always states that they have the option to leave at any time,” explains Tufano-Sugarman. What’s more, you can change your mind about participation at any point, even if you signed the consent statement.
Focus on the Benefits
If your care team has suggested you participate in a cancer clinical trial, it’s because the trial may offer treatment that is more effective than the current standard of care, and the benefits outweigh the risks. You may feel more at ease by focusing on those potential benefits, like:
Getting access to an innovative treatment
Going on a treatment with fewer side effects
Receiving additional tests, scans, and other monitoring, often at no cost
Trying a treatment that could lead to longer-lasting remission
Ask your doctor to review the potential benefits with you.
Get Familiar With the Trial Team — and Feel Free to Contact Them
Your clinical trial team will likely include an on-call navigator or other administrator who can offer support in conjunction with your regular care team. This person can “answer any questions or concerns about side effects and your treatment schedule,” says Tufano-Sugarman. These trial coordinators are well acquainted with the study and can also provide you with personalized care and help you schedule tests and visits (and even fast-track you for these appointments as needed).
Continue to See Your Regular Oncology Team
Some trials require that you see a new doctor associated with the study or have check-ins at a different medical site. That can be tough emotionally, says Tufano-Sugarman, because people tend to build a very strong relationship with their oncology team, or may be accustomed to visiting a particular treatment center. These changes may feel like a shake-up to your routine, but you can retain a sense of normalcy.
“If your clinical trial is not at your home cancer center, it’s important to still stay in contact with your home team,” says Sivendran. Keeping up with your appointments with your regular oncologist is an important part of your treatment, and they can continue to support you even if you have to see an additional provider or go to another facility as part of your trial.
Lean Into Mindfulness
Mindfulness practices like meditation, breathing exercises, and visualization can help relieve your stress and anxiety, says Tufano-Sugarman. Online videos and mindfulness apps are a great place to get started — and you don’t need to meditate for hours to reap the benefits. Research suggests that brief, standalone mindfulness exercises you can do on your own can lower stress levels.
Connect With Others Who’ve Gone Through Trials
Talking with other people who have gone through trials or had similar cancer experiences can quell some fears, says Sivendran. She recommends resources like ACS CARES, an app that connects cancer patients with experts and others who are living with your disease.
Tufano-Sugarman likes to remind people that clinical trials shouldn’t feel like a last resort — they often open up more possibilities.
“It offers you an opportunity to be exposed to a treatment that you would never have exposure to otherwise, and it usually leads to more options,” she says. Whether to enroll in a clinical trial and continue to stay for its duration, though, is your decision. Speak thoroughly with your care team and make sure you have all the information you need to decide if it’s the right step for you.
The Takeaway
Although it’s normal to have some hesitations about participating in a cancer clinical trial, every trial includes safeguards and close monitoring. Before a trial begins, you’ll receive an informed consent statement to review and sign — which you can revoke at any time.
Talking to your care team and understanding the benefits of participation can ease your fears and help you feel more confident participating in the trial.
Trials may give you access to promising new treatments and additional care resources that wouldn’t otherwise be available.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Sparacio A et al. Self-administered mindfulness interventions reduce stress in a large, randomized controlled multi-site study. Nature Human Behavior. June 11, 2024.
Conor E. Steuer, MD, is medical oncologist specializing in the care of aerodigestive cancers, mesothelioma, and thymic malignancies and an assistant professor in the department of hematology and medical oncology at the Emory University School of Medicine in Atlanta. He joined the clinical staff at Emory's Winship Cancer Institute as a practicing physician in July 2015. He currently serves as chair of the Lung and Aerodigestive Malignancies Working Group and is a member of the Discovery and Developmental Therapeutics Research Program at Winship.
Dr. Steuer received his medical degree from the New York University School of Medicine in 2009. He completed his postdoctoral training as a fellow in the department of hematology and medical oncology at the Emory University School of Medicine, where he was chief fellow in his final year.
He has been active in research including in clinical trial development, database analyses, and investigation of molecular biomarkers. He is interested in investigating the molecular biology and genomics of thoracic and head and neck tumors in order to be able to further the care of these patient populations. Additionally, he has taken an interest in utilizing national databases to perform clinical outcomes research, as well as further investigate rare forms of thoracic cancers.
Steuer's work has been published in many leading journals, such as Cancer, the Journal of Thoracic Oncology, and Lung Cancer, and has been presented at multiple international conferences.
Laurel Leicht has been a writer and editor for nearly two decades. A graduate of the College of William and Mary and the master's program at the Missouri School of Journalism, she covers a wide range of health and fitness topics, including breast cancer, various chronic conditions, mental health, and cardiovascular health.
