Common Questions & Concerns About Clinical Trials

November 9, 2023

Keep reading for answers to common questions & concerns people have when considering cancer clinical trials, including: 

 
  • Should I consider joining a clinical trial?
  • If I join a clinical trial, would my insurance cover the costs?
  • How do I find a trial that is right for me?
  • Will I get a placebo if I participate in a trial?
  • What kind of care will I receive?
  • Is a clinical trial an option only if I don't have any other options?

Historically we thought of cancer clinical trials as being the last option, but for many people it should really be thought of as the first option.

Dr. Patricia Robinson, Hematology/Oncology

We are in an era of remarkable progress in understanding why and how cancers start and grow. Researchers are developing new ways to treat many cancers. Targeted therapies and immunotherapy have opened the doors to real hope for people whose cancers could not be treated successfully before.

Clinical trials are the engine that drive progress in cancer treatment. Patients who join cancer clinical trials have access to the newest therapies and a high level of care. By joining a clinical trial, they give themselves hope for longer and better lives. They also contribute to a better future in cancer care and treatment for others facing cancer.

Not everyone can or should participate in a cancer clinical trial. But for some patients, clinical trials can be lifesaving. Here’s what to know:

 
What are clinical trials?

Cancer clinical trials are research studies to determine whether a new approach to cancer prevention or treatment works better than the best-known available treatment. Clinical trials compare the new drug or approach with the existing standard of care to make sure the drug is safe and effective.

There is no guarantee that any individual will benefit from a clinical trial. But every drug or agent that reaches a clinical trial has already been thoroughly tested and shown to have significant promise. In many cases, trials are the only way to get the newest cancer treatments.

 

¿Qué Son los Ensayos Clínicos?

 
Should I consider joining a clinical trial?

Everyone facing a cancer diagnosis of any kind should be aware of clinical trials as a treatment option — but not everyone can or should participate in a trial. It may be a good option if you answer yes to any of the following questions:

  • Are you interested in getting access to the newest cancer treatments?
  • Was your cancer diagnosed at an advanced stage?
  • Are you no longer responding to other treatments?
  • Is your cancer at high risk for recurring or spreading after primary treatment?
  • Are you interested in helping other cancer patients by advancing cancer treatment?
  • Do you have a rare, aggressive, or difficult-to-treat cancer?

The best way to know if you should consider joining a clinical trial is to talk with your doctor and treatment team. If your doctor is not involved in doing clinical research or does not explain your options for a clinical trial, consider getting a second opinion.

 

Did You Know?

Our Cancer Support Helpline provides free navigation for cancer patients and their loved ones. Our team includes a Clinical Trials Navigator who serves as a resource to cancer patients and families seeking general information about cancer clinical trials.

Call Us Now – 888.793.9355

 

If I join a clinical trial, would my insurance cover the costs?

In many cases, costs associated with a clinical trial — including any drugs, study-related tests, and medical visits — are covered by the trial's sponsor or by the research institution. A patient's health insurance may also cover some costs. Insurance coverage for clinical trial participation varies based on an individual’s insurance company and policy. 

Before committing to a clinical trial, be sure to ask about the costs involved, including any indirect costs (such as childcare or lost job time) for additional doctor’s appointments, clinic visits, or procedures. Transportation and lodging may also be indirect costs. Some patients need to travel out of town to take part in a trial. Some but not all trials will offer financial assistance for travel and lodging.

 

"It's essential for participants to discuss the financial aspects of the trial during the informed consent process. This allows them to fully understand what costs are involved upfront before they even get started."

Understanding Clinical Trials webinar, with Sabrina, Ph.D., R.N., CN-BN, Clinical Trials Nurse Navigator, Cancer Support Helpline

 

How do I find a trial that is right for me?

Finding a trial that is right for you and your cancer can be a challenge. The best way is to discuss your situation with your healthcare team or to get an opinion from a medical center that is actively involved in clinical trials for your cancer.

If you choose to look for trials online, stick with established sites or with organizations that help match patients to trials. Be sure you know your exact cancer type, any previous cancer treatments you have had, and any medical problems that could cause you to be ineligible for a trial. Print out anything you find and take it to your doctor to discuss.

 

How are the results of a clinical trial measured?

Every trial measures whether the new approach is safe and effective. Safety is assessed by recording the side effects each patient experiences and the severity of these problems. This information will come from the treatment team and — more and more often today — from the patients themselves.

Clinical trials also measure what happens to the tumor as a result of the treatment. The researchers look at what happens in individual patients and in the whole group of patients being treated. Many trials now focus on reducing the risk of recurrence in people whose cancers have factors that make them likely to come back or spread.
 

Acknowledging the Past to Change the Future

Our new docuseries, “Justified Medical Mistrust: Acknowledging the Past to Change the Future,” addresses myths, truths, and concerns that Black and African American patients and their caregivers often experience when considering cancer clinical trials as part of their care plan. The first film — “Justified Medical Mistrust: How Does a Clinical Trial Benefit ME?” — is streaming now.

Watch Now 

 

Will I get a placebo if I participate in a trial?

It is very rare for people with cancer in clinical trials to get a placebo (an inactive substance, sometimes called a sugar pill). In a cancer clinical trial, patients will get at least the standard of care. This means getting the best-known available treatment or practice for any type of cancer.

Most trials compare adding a new treatment, versus adding a placebo, to the standard of care.

 

What kind of care will I receive on a trial?

If you participate in a clinical trial, you will be part of a research study. But you are not a guinea pig. People who participate in clinical trials get very high levels of care. Their cancers and their overall condition are monitored and cared for very closely.

 

Will I have to leave my current doctor?

That depends on what kind of cancer you have, where you are being treated, and for what kind of trial you enroll. If there is no trial available in your treatment facility, your doctor should be willing to refer you to another cancer center.

 

Questions to Ask Your Healthcare Team About Clinical Trials

 

Is a clinical trial an option only if I don't have any other options?

No. There are trials for every type and stage of cancer. For many cancers, a trial can even be the first option. As you consider your options, take time to think about what is most important to you. It’s also helpful to have an open and honest conversation with your doctor about the goals and expected treatment outcomes for a clinical trial. This will help you decide whether a clinical trial might be right for you. 

 

“Take the time you need to consider benefits, risks, and how the trial aligns with your goals and values. And don’t hesitate to get a second opinion. Seeking a second medical opinion is a valuable practice, especially when considering clinical trials.”

Understanding Clinical Trials webinar, with Sabrina, Ph.D., R.N., CN-BN, Clinical Trials Nurse Navigator, Cancer Support Helpline

Ready to gain the tools, knowledge, and confidence to understand and make decisions about clinical trials? Watch our webinar "Understanding Clinical Trials" for patients and caregivers.