If you have ever thought about participating in a clinical trial, the best place to start is with your primary care doctor, even if he or she has not mentioned it before. It’s best to be frank in your discussion, and express the reasons why you feel a clinical trial is a good option for you.
Typically speaking, most people consider clinical trials when a treatment for their disease or condition isn't available or if the standard treatment hasn't worked. Clinical trials can offer hope for many people and an opportunity to help researchers find better treatments for people in the future, but they aren’t for everyone. There are many considerations before starting any clinical trial.
Your doctor might be familiar with clinical trials for an experimental or established drug or therapy, or he or she may refer you for a second opinion. In either instance, ask the doctor to discuss with you the benefits and risks of any clinical trial you are considering and whether you might be eligible to participate.
If you seek a second opinion, the best time is at a major decision point, typically before ever starting therapy or at progression before starting a new kind of treatment, says Dr. Jared Weiss, an assistant professor of Clinical Research for Hematology/Oncology at the University of North Carolina School of Medicine in Chapel Hill, and a member of Global Resource for Advancing Cancer Education (GRACE).
“The very least productive time is right after starting a new line of treatment,” he says, because “unless the chosen regimen is truly terrible, most doctors will not recommend changing it until it has failed. Further, once the first drop of a regimen has been started for a given line of therapy, the patient becomes ineligible for clinical trials for that line.”
Some patients (and their doctors) wait to get a second opinion when they’ve run out of standard options, Dr. Weiss says.
“An academic doctor may have clinical trials that can offer treatment when no good FDA-approved options are left. However, some of the very best clinical trials are restricted to patients in early lines of therapy and it would be a shame to miss out on even considering these. So, I recommend seeing at least one second-opinion at a major academic center as soon as possible after diagnosis.”
Dr. Weiss says too often, patients see him a day or two after starting a new treatment, with the idea that if he has a good trial for them, they’ll switch.
“No clinical trial allows this. They can’t, because they would have no way of knowing if a response was due to the trial regimen or to whatever was given before it. It is reasonable to want to start treatment right away,” he said. “So, if you truly want to consider options from a second opinion, don’t start a new line of therapy before seeing the expert,” he said.
If you plan to seek a second opinion, Dr. Weiss recommends providing the new doctor with as much information about your health condition as possible. This will enable him or her to provide you with the best and most accurate information.
Include doctor’s notes, laboratory reports, pathology reports (and actual tissue or slides for further testing), radiology reports, and CDs of the actual diagnostic images if they are available. Many academic centers have new patient coordinators that will help you to transfer this information, he says.
“Seeking good clinical trials is the most important reason to seek out a second opinion. Clinical trials are not the best choice for every patient at every time point, but I feel strongly that optimal care should at least consider them at every major decision point,” he said.
Lynette Summerill is an award-winning writer and Scuba enthusiast living in San Diego, CA with her husband and two beach loving dogs. In addition to writing about cancer-related issues for EmpowHER, her work has been seen in newspapers and magazines around the world.
Sources:
Insider’s Guide to the Second Opinion. Global Resource for Advancing Cancer Education. Dr. Jared Weiss. 13 November 2011. Used by permission. Online at:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide-to-the-second-opinion
Talking to your Doctor about Clinical Trials. Alzheimer’s Association. Accessed online at:
http://www.alz.org/research/clinical_trials/talk_to_your_doctor_about_trials.asp
Clear Communication: Talking with your doctor. National Institutes of Health. Accessed online at: http://www.nih.gov/clearcommunication/talktoyourdoctor.htm
Reviewed March 16, 2012
by Michele Blacksberg RN
Edited by Jody Smith