If you've ever thought about clinical trials for your care, different resources may make that decision easier.
On prominent display in my oncologist's office is a photocopied sign that reads, "A Clinical Trial Is Not A Last Resort." I know this to be true, even though I have never participated in a clinical trial. When I was first diagnosed, before we knew breast cancer had spread out of my breast and into my lungs, I immediately agreed to join a clinical trial that was happening at my hospital, with my oncologist. Both the oncologist and the nurse were optimistic about what had been seen to-date in patients. We just needed to biopsy that pesky lung to rule out metastases. I had never hoped so ferociously for a negative result.
That is my single, unsuccessful experience in attempting to overcome the hurdles of clinical trial participation. I immediately started on a standard treatment, which has been effective at controlling my disease. Along the way, I've met many women who've joined clinical trials.
They've done so for a variety of reasons, ranging from an ethical belief that participating is the right thing to do to find better treatments for all to those who have found themselves nearing the end of standard treatment choices. The simple fact is that without clinical trials, and the patients willing to join them, new and improved drugs and treatments would not happen. I appreciate that the United States has strict and patient-safety-derived guidelines meant to ensure that the most vulnerable people — in this case, those who desperately want to stay alive – are not misled about the effectiveness of any treatment.
Even if your doctor isn't as forthright as mine about clinical trials, you can be the one to bring that information into the conversation. Each study has its own set of rules about who can be included, what needs to happen before trial participation can begin, and treatment locations that can put a well-suited study out of reach. You may find, like me, that an aspect of the study prevents you from easily joining. Even with that in mind, it is worth looking at what is happening in research for your specific disease, thinking about whether or not participating is a good choice for you, and talking to your oncologist about your options.
A first place to start is clinicaltrials.gov but regardless of the type of cancer you have, the Clinical Trials Education page on the Metastatic Breast Cancer Alliance site has useful information because it has gathered the resources from ten organizations into one easy-to-navigate place. Each organization has patient-friendly advice about what it means to participate in a clinical trial. I particularly like Komen's myth-busting "Did You Know?" fact sheet, Triage Cancer's overview of clinical trials, which also provides links to more information and videos, and Cancer Support Community's eight-page booklet that is easy to understand and informative.
Joining a clinical trial will be my first thought when I have to change treatments, even knowing that I might be one of the people to receive standard, accepted treatment rather than a cutting-edge drug. Not many days go by when I don't think about the reason I am still alive: Years ago, before they knew how successful the studies would be, there were patients willing to take a chance at better treatment by joining clinical trials for Herceptin and Perjeta. So, I've bookmarked the clinical trials information page for the future with the expectation that one day it will help me find hope when I need it most.