How to Talk to Your Oncologist About Joining a Cancer Clinical Trial

If you have cancer and are interested in applying to be part of a trial, you may not know where to begin. These tips can help you embark on your journey toward learning more about — and potentially joining — cancer clinical trials.

“At most academic cancer care centers, when you’re diagnosed or have a cancer relapse, you are screened to see if you might be a candidate for a clinical trial,” says Leland Metheny, MD, an oncologist specializing in hematology at the University Hospitals Seidman Cancer Center in Cleveland. “If so, either a physician or a clinical trial nurse reaches out to you to talk about the opportunity to participate.”

If your doctor hasn’t talked to you about clinical trials, you should feel free to bring the topic up yourself. Although it may feel intimidating at first, remind yourself that it’s a positive thing to take an active role in your care, and your healthcare provider is there to answer questions and guide you. You could say something like, “I’m interested in exploring if I could be a good fit for a clinical trial. What might that look like for me?”

• Phase 1 trials, which test new drugs or devices on a small group of people for safety, optimum dosage, and potential side effects. “Before joining a phase 1 trial, I advise patients to fully read the consent, which is oftentimes quite long,” says Metheny. “And specifically ask about the potential risks of these new treatments or combination of treatments.”
  
• Phase 2 trials, which include a slightly larger group of people to further test treatments that did well in phase 1, continuing to monitor effectiveness, safety, and side effects. In this phase, Metheny says you can start asking questions like, ”Why would this drug be potentially more effective than standard treatment?” or “What are the positives and negatives in terms of the potential benefit versus the potential risk?”
• Phase 3 trials, which expand testing to an even larger group, particularly in varying populations and dosages, to compare the new treatment to standard treatment approaches. If the trial is successful, this is when the drug may gain approval for use from the U.S. Food and Drug Administration (FDA).
• Phase 4 trials, which continue to monitor treatments newly approved by the FDA in a more widespread population over time.

Consider which level of trial you’d be most comfortable joining, Metheny advises. If diving right into an experimental treatment doesn’t feel right to you, there are other options to keep in mind.

“The least risky clinical trials are biorepository trials, or those that involve either collecting patient data or collecting certain types of samples from patients so that it can be used in the future for research,” he says. Although they likely won’t directly benefit you, these trials can provide insights that help improve cancer care for future generations.

If your doctor recommends a particular clinical trial, it’s important to ask questions to learn more about what your participation might look like. Your questions may include:

What Is the Purpose of This Trial?

Am I Eligible?

What Are the Risks and Benefits?

This should be covered automatically in the discussion, says Metheny, but it’s always good to ensure you’re clear on exactly what the pros and cons may be if you choose to participate in a trial.

What Side Effects Might I Experience?

“Point out any side effects, or groups of side effects, that you might be worried about,” Metheny advises. For example, he says, “If you’re an artist, you might be concerned about side effects relating to neuropathy or nerve damage, because you use your hands to paint or sculpt.” It’s important to discuss personal considerations, so you can get an idea of what your daily life may look like — and how it could change — if you participate in the trial.

What Are the Logistics of Participating?

“It could be anxieties around being able to continue to work, or around family life and childcare. Or it might be stressful just coming to the hospital and getting so many tests,” says Metheny. “But if you’re anxious, and you think it will impact your ability to fully participate in a clinical trial, voice your concerns, so we can help minimize your anxiety or help you through it.”

• Reflect on your concerns before your appointment. It may even be helpful to write your worries down and bring the list with you, so you don’t forget what you want to say.
• Initiate the conversation. Your doctor may not realize you’re worried or anxious, so don’t be afraid to bring it up. You might say, “I have been reading the trial consent and have some concerns. I’d like to talk through them with you.”
• Ask specific questions. Be specific about what’s on your mind and what you’re asking of your doctor. You could say, “I’m worried about how side effects might impact my daily life,” or “I’m worried about the additional stress this trial may cause. How might my care team help me manage that?”
• Bring a trusted friend or family member to your appointment. They can help you absorb information from your visit and reflect on it afterward.

“We don’t want to enroll you in a clinical trial if you don’t anticipate being able to fully adhere to it,” says Metheny. “And if it feels like too much, the trial might not be the right fit for you.”

If you’re not a good fit for one trial, speak with a clinical trial nurse or coordinator. Ask them to follow up with you at a certain stage of your therapy or care, says Metheny.

You can also research trials through various academic institutions or ClinicalTrials.gov to see what might be available to you outside of the cancer center where you’re treated. You can use the National Cancer Institute’s How to Join a Clinical Trial: Cancer Details Checklist to work through questions about your diagnosis that can ultimately help you determine your trial eligibility.

At the end of the day, if you’re interested in participating in a clinical trial, don’t give up. “One of our goals as physicians is to be able to offer every patient the opportunity to participate in cancer research,” says Metheny, “because that’s how we move science forward and improve cancer outcomes.”

• If you’re interested in participating in a cancer clinical trial, do some research, ask your doctor about your options, and prepare a list of questions about the benefits, logistics, risks, and potential side effects if you’re eligible for a specific trial.
• Be open with your healthcare provider about any concerns you have, so they can work with you to problem-solve and ease any anxiety or worry.
• If a trial isn’t immediately available to you, stay informed through the cancer care center and by doing your own research to help identify future opportunities that may be a better fit.