Everything we know about treating brain tumors has come from research, including clinical trials. If you have used medication or therapy to treat your tumor, then you’ve benefited from clinical trials. But if you’re asked to take part in a clinical trial, it’s natural to feel a little skeptical.
Eileen Maloney-Wilensky, MSN, RN, CRNP, Director, Clinical Research Division for Neurosurgery, Penn Medicine, discusses why clinical trials are important—and worth overcoming that skepticism.
Why you might be hesitant—and why you shouldn’t be
It’s completely normal to be hesitant about starting something new, but Eileen knows some ways to work around hesitancies.
“Some patients are concerned about having to come in more often, since they already have so many appointments,” says Eileen. “We work to get other appointments in on the same day. Or if you’re already at the hospital and have a question about something else, we’ll try to get that physician in to see you right away.”
Another hesitancy involves fear. A 2012 study in the Journal of Cancer Education found that patients often feel a fear of the unknown, which makes them wary of joining trials. But at Penn, Eileen says, “We know things can get confusing, but that’s what we’re here for.”
“Our patients have our cell phone numbers and can call us anytime—nights, weekends—it doesn’t matter. We’re all in this process together, and we’re not leaving you to do it all alone. You always have someone to go to.”
Why trials are important
Standard of care
Radiation and chemotherapy are the most common treatments for brain tumors, Eileen notes. “However, these treatments are not cures, and they’re not easy. They can leave toxins in your body, with consequences like having a low blood count or being immunosuppressed.”
Radiation and chemotherapy can also cause anemia, nausea, fatigue, and other side effects, according to the National Cancer Institute.
Clinical trials do not always cause those effects, and they allow you to try something different and novel.
Finding a cure
“In years to come, we may be able to provide more individualized care by identifying certain markers in the patient,” Eileen says. “This could help us ‘tailor’ a drug to the tumor, improving its effects. For example, we’re currently working on a trial targeting EGFRvIII, a factor in tumor growth, to stop the tumor in its tracks.”
Eileen reminds patients, “We’re not there yet, but that’s a process we’re working on. And participating in trials lets you be a part of that process.”
Improved quality of life
Eileen is always up-front with patients that a trial is not a cure—it’s a process of looking for a cure. But that doesn’t mean that it won’t work at all. “A trial has the potential to do a lot of good, like greatly improve quality of life by slowing down tumor recurrence,” she says.
She has also seen trials give people more time to enjoy that quality of life. “I’m thinking of 2 patients, both of them over a year since diagnosis and treatment. Neither of them have had recurrence. We’re giving them a much longer time. Something we’re doing may be working.”
Why trials benefit you
Participating in clinical trials isn’t just about finding a cure. There are other benefits that make trials a meaningful experience.
You might not think about it right away, but trials bring friendships. “When you enter our world, you get the opportunity to make some really great friends,” says Eileen. “For starters, you become my friend for life. And you’ll meet more people in the trial itself. So, whenever you go to the doctor, you know you’ll see friends. It’s something you can look forward to, not dread.”
Joining a clinical trial also gives you access to resources you might not normally have. Eileen says, “When we see a patient who is struggling, social work gets involved and gives access to lots of programs, such as financial assistance.”
What to look out for
Before getting involved with any trial, there needs to be informed consent. Eileen explains, “We go through our consent form line by line. It takes an hour, but we want to do it correctly. We’ll listen to what you’ve been told so far, what you’ve looked up on the Internet, and other information you might have, and clear up any misconceptions.”
Eileen also stresses the importance of including your family or whoever else will be involved with the trial. “Families are more than transporters—they are patients’ eyes and ears when they’re tired or are not hearing directions. We look for confirmation that you, your family, and your caregiver understand our instructions.”
Questions to ask before joining a trial
Eileen recommends asking certain questions to make sure you have all of the information you need, and that the trial is right for you:
Ask your physician
- How much time will this take? Is there flexibility in appointment times?
- Will I be charged for any trial-related tests, drugs, or procedures?
- Is there someone I can talk to about the social impact? Who can help me with at-home responsibilities with my other children?
Ask yourself
- What else is going on in my life right now?
- How can my family come together to make this work?
- What types of support will I need?