The words, clinical trial, are often not what cancer survivors want to hear from their oncologist. They conjure up fears of being a guinea pig or at the end of a rope, receiving inferior medical care, or getting only a placebo rather than the real McCoy. But those are old wives' tales. In fact, clinical trials offer survivors another treatment option.
As a metastatic breast cancer survivor, helpline volunteer and facilitator of a nationwide telephone support group at SHARE, I often hear survivors expressing their reluctance to consider a clinical trial. I relate to the hesitation and concerns because those fears were once my own, until I learned more about trials and how they work.
To demystify clinical trials and present them as an alternative to standard-of-care treatments, the American Society of Clinical Oncology and the American Cancer Society both took steps to create a free, online, patient-centered resource. These resources are short videos that address real and perceived barriers to participation in clinical trials and help us ask our doctor the right questions.
ASCO and the National Cancer Institute created PRE-ACT (Preparatory Education About Clinical Trials), which is available on Cancer.net (www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/pre-act). With PRE-ACT, you can access 28 very short videos that can help to understand clinical trials and debunk the myths. Most of the videos are under one minute.
You can either create an account or directly access the videos without setting up an account. If you decide to create a logon, you will be asked to answer a few questions. Without an account, you will be asked the same questions every time you directly access the videos.
The videos address issues such as the difference between the three phases of clinical trials, whether you can quit a clinical trial once it is underway, who pays for the cost of a trial, and how your information remains private. They provide an excellent overview of clinical trials and answer many of the questions that survivors often have. The ideal video to start with is, What are clinical trials?
ACT: About Clinical Trials
In a like-minded way the ACS collaborated with the pharmaceutical company Genentech to develop ACT: About Clinical Trials (www.learnaboutclinicaltrials.org/#ACT). Besides dispelling incorrect notions about clinical trials, the topics of the videos include determining whether a trial is right for you, preparing a discussion about clinical trials with your doctor, and understanding informed consent, for example.
ACT videos feature Dr. Susan Love, who is a surgeon at David Geffen School of Medicine at UCLA and author of Dr. Susan Love's Breast Book (De Capo Press, 6th edition, 2015), which many survivors have read. She is a breast cancer advocate and president and medical director of Dr. Susan Love Research Foundation. The videos also feature Dr. Otis Brawley, who is a medical oncologist at Grady Memorial Hospital in Atlanta and Chief Medical and Scientific Officer, and Executive Vice President of ASC. He is the author of How We Do Harm: A doctor breaks ranks about being sick in America (St. Martin's Press, 2011), an excellent book that discusses the pros and cons of treatment options and more. The videos also feature three patient advocates. Two of the advocates are breast cancer survivors.
The site also features ACS's Clinical Trials Matching Service (800-970-7848). I phoned the service, which was answered by a live person. She was extremely helpful and explained how the program works. The representative will ask you a few questions to narrow down the search for trials and can send you the information by either email or mail. She will also answer any other questions you may have about trials. Another source for finding clinical trials specifically for you is BreastCancerTrials.org (www.breastcancertrials.org).
The ACT website includes other resources, such as a guide about questions to ask your doctor. Oftentimes, if you want to learn or find out about clinical trials it will be up to you to bring up the topic with your oncologist, search out trials on your own, and get feedback from your doctor about your search results. Additional information on the website covers the ACS's Hope Lodge for accommodations away from home, and Family Reach for financial support.
In being able to learn about and search for clinical trials and debunk the myths, we have the opportunity to work with our oncologist to broaden our treatment options and decide whether a trial is the right choice.