Common Questions, Concerns and Misperceptions

Patients have many misperceptions about clinical trials. This section addresses some of the most common questions, concerns and misperceptions.

Misperception:
If I enroll in a trial, I may get a placebo instead of actual treatment for my cancer.

Reality:
This is not done. Women who join clinical trials are either given the “standard of care,” which is the best treatment available for their type of ovarian cancer, or receive the new treatment that is being tested. Placebos may be used in situations where the new treatment being tested is an “add on” to the standard of care or if there is no standard of care, meaning doctors would not do anything in that particular situation.

For example, there are clinical trials that look at whether extra chemotherapy after the standard first-line course of treatment improves women’s health. In this kind of trial, a placebo would be used, but all women receive the best treatment available first and then some would receive placebos and others would get extra chemotherapy.

Misperception:
Clinical trials are a last resort for patients.

Reality:
A woman at any point in her experience with ovarian cancer may be eligible for a clinical trial. Many women only think of clinical trials as an option for the treatment of their cancer, and often only after other treatments have failed them. There are a lot of trials for women in this situation, but many other trials are available.

For example, trials are conducted for women who have not yet had surgery. This type of trial might try to find better ways to diagnose ovarian cancer. There are also clinical trials for women who have just finished their first treatment. These trials may test ways to prevent or delay recurrence. In addition, women who do not have ovarian cancer, but may be at high risk because of a family history of the disease, can also take part in trials focused on ways to prevent it.

Misperception:
Patients are not always told all the risks that might come with participating in the trial.

Reality:
All women must be able to provide “informed consent” before they decide to participate in a clinical trial. This is your right as a clinical trial participant. Before you give your consent, you will be told all the facts about the study including any risks and benefits that might be experienced.

Some trials may present more risks than others and each woman should consider the risks and discuss them with her doctor before making a decision to participate. In addition, if new risks or side effects come up as more women enroll in the study, then you will be informed of this as well. You can leave the study at any time if you feel it is no longer in your best interest to participate.

Misperception:
If my doctor did not mention a clinical trial, then it is not for me.

Reality:
Unfortunately, many physicians do not know about clinical trials that may be available to their patients or they may be concerned about how their patients will react if they bring up clinical trials. It is up to you to ask about trials if your doctor did not mention them. There may not be appropriate clinical trials for you, but it does no harm to explore the options with your doctor, just as you would ask about other aspects of your care.

Misperception:
Insurance does not cover the costs associated with clinical trials.

Reality:
Unfortunately, not all insurance companies cover the patient care costs, such as costs for additional medical tests associated with clinical trials, but many do. What is covered varies by health plan and by study. If you find a trial in which you want to participate, ask your doctor or the office’s research nurse to help you determine what your insurance covers. In many studies, the costs not covered by insurance will be paid by the study. (Note that extra costs associated with travel to additional appointments or daycare are typically not covered, but are in some cases.)

For example, all clinical trials that are conducted at the National Cancer Institute’s (NCI) campus in Bethesda, Md., provide reimbursement for travel from anywhere in the U.S. for participating patients. More information about insurance coverage can be found in the NCI’s resource,  Clinical Trials and Insurance Coverage: A Resource Guide.

You can also find if your state’s law requires insurance coverage of clinical trials by going to the State Policy section.

Patient Experiences

After exploring all treatments available to me, including going abroad for treatment, my husband and I met with my gynecologic oncologist to schedule surgery one more time, surgery that would surely involve a liver resection. Fortunately, my oncologist was not so anxious to pursue the obvious. After eight surgeries, he was bothered that we had not affected the chemistry of the disease, just cut out tumors after the fact. He suggested that we consider clinical trials, a course heretofore unknown to me.
— Annette Leal Mattern

To learn more about a first-hand experience of someone with ovarian cancer who participated in a clinical trial, read Annette Leal Mattern’s story.

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