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.
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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:
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- 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).
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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.
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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.
