6 Common Myths About Cancer Clinical Trials, Debunked

Despite the many benefits of clinical trials, misconceptions still exist. Get the facts, so you can make an informed choice about whether applying for a trial is right for you.

Whether you are at the start of the cancer journey or have been navigating your postdiagnosis life for some time, you may be wondering about clinical trials: What are they? How do they help shape cancer treatment? And are you a candidate for one?

“Clinical trials are studies to find new ways to prevent, detect, control, and treat a disease like cancer,” says Heloisa Soares, MD, PhD, medical director of the clinical trials office and an associate professor of oncology at the Huntsman Cancer Institute at the University of Utah, in Salt Lake City.

Clinical trials are an integral part of medical research and treatment for illnesses such as cancer, but misconceptions may cause doubts or fears about participating in them.

“It’s important for patients to understand clinical trials, so they are better equipped to make decisions about them,” says Dr. Soares.

To help you do that, here, some common myths about cancer clinical trials are debunked.

Myth 1: Clinical Trials Are Only for People With Late-Stage Disease

You can participate in a clinical trial at any phase of the cancer journey, says Soares, not just if you have late-stage disease. Cancer clinical trials can even be for people without cancer, to study prevention methods.

A trial can be designed to explore new strategies to reduce the risk of cancer recurrence after surgery for early stage cancer or to find a better treatment combination than the current standard treatments for stage 4 or metastatic disease, Soares explains.

Myth 2: Cancer Clinical Trials Can Be Dangerous

By the time a new treatment strategy or medication is used in a clinical trial, it has passed a lot of safety assessments, says Soares. “In the beginning of the drug development, there’s a lot of design and monitoring to make sure that it’s safe for the patients,” she says.

Scientists first evaluate the safety and effectiveness of a new drug or device using laboratory and animal studies. If the drug or device is shown to be safe and effective, the U.S. Food and Drug Administration (FDA) assesses and approves it for use in human study participants. The FDA oversees all clinical trials, and any trial that appears to be more harmful than standard treatment will not be allowed to continue.

Once the trial starts, monitoring is rigorous, says Soares. In drug trials, doctors typically start you on a low dose of the experimental drug and gradually increase the dosage, depending on how well you tolerate it. “It’s a very controlled environment, and there is a lot in place to maximize safety,” she says, adding that if you experience any side effects, they’re quickly addressed.

Another important point, Soares notes, is that you’re prepared before the trial, so you know what to expect when taking these medications. “We explain that if a side effect were to develop, these are the steps that we’ll take to treat the side effect and minimize the chances of that happening again,” says Soares.

Myth 3: You’ll Be Treated Like a ‘Guinea Pig’

You may worry that participating in a trial means getting poked, prodded, and treated as a specimen rather than a human being. This is a common and valid fear, particularly for certain communities, such as Black Americans, who historically experienced harmful practices in clinical trials.

Today, safeguards have been put in place to ensure patients are given complete information about the trial procedure and risks. These measures include institutional review boards, which include doctors, scientists, and members of the public, whose duty is to ensure study participants are not put at unnecessary risk. Other practices include informed consent, which explains that you can ask questions, request more information, or withdraw from a study at any time; data and safety monitoring boards; and more.

“We would never open a trial that we think the risk of harm is way higher than the risk of benefit,” says Soares.

Myth 4: You May Receive a Placebo Without Consent

A placebo is a medication or procedure that has no therapeutic benefit but is given under the guise that it does. It is used as a baseline to compare the impact of the experimental treatment. You would never receive a placebo without expressly consenting to the possibility as part of the informed consent process. But placebo-controlled trials randomly assign participants, and you likely wouldn’t be told if you got the experimental drug or a placebo.

At the end of a trial, participants who were on a placebo often have the option of getting the experimental treatment, says Soares. And in cases where a person on a placebo experiences cancer growth, they may be given the option to make the switch even before the study is over.

“Through the course of a clinical trial, there are typically some midpoints of analysis for safety and efficacy,” says Soares. “If that analysis shows that the experimental treatment is way more effective, the decision can be made to stop the trial, because they already achieved the conclusion early on. And they will give those on the placebo the opportunity to receive the treatment.”

Myth 5: You Won’t Be Allowed to See Your Own Doctors and Will Get Less Care

You can — and should — continue your care and appointments with your primary doctors. Your care team should be kept in the loop about your trial participation and how it fits into your existing care regimen.

When it comes to the care you receive from the clinical trial doctors, it will often match or surpass that of your medical team. Clinical trials not only provide early access to cutting-edge treatments, says Soares, but also enable you to receive care from a bigger cancer care team, who monitors you more closely.

Myth 6: Your Participation Doesn’t Really Matter

Clinical trials provide an opportunity to contribute to medical research, says Soares. Many effective treatments that are used today to save and improve lives, such as chemotherapy and vaccines, would not exist without research participants.

“I love to tell my patients that yesterday’s trial treatment is today’s standard of care. And that is beautiful, to think that you helped to make that true,” says Soares.

The Takeaway

Misconceptions about cancer clinical trials persist and lead to a reluctance to participate.
Some common myths include the belief that cancer clinical trials are inherently dangerous or are only for people who have late-stage cancer.
Knowing the facts can help you decide whether you want to participate in a clinical trial, which can potentially benefit you and others on treatment for cancer.