Being diagnosed with cancer is never easy. Having access to information and a supportive network are essential to coping with this diagnosis, as is finding the right treatment for you. Cancer is often treated by a multidisciplinary team of specialists in medical oncology, surgery, and radiation therapy.
When it comes to treatment plans for specific cancers, doctors discuss cases at specialty conferences and at tumor boards to decide which treatments offer the best chances of survival and best potential quality of life. This cooperative discussion encourages a thorough review of all diagnostic imaging tests, such as x-rays, MRIs, and PET-CT scans, as well as any biopsies or tissue removed at surgery. In some cases, experts agree on a treatment plan that involves different types of treatment, such as chemotherapy, radiation therapy, and surgery. But sometimes, there is no single best treatment plan, and these forums stimulate a discussion that eventually leads to several treatment options that can be presented to the patient, including cancer clinical trials.
Selecting a treatment depends on many factors, including the characteristics of the tumor itself and the needs and preferences of the individual patient. In some situations, there may be more than 1 “best” option. In these cases, it becomes important to sort through the possible benefits and harms associated with each option before settling on a treatment plan. Patients often ask me, “What would you do if you were me?” I never avoid the question because it speaks directly to the underlying fears we have about making decisions that affect our well-being and our future.
Consider, for example, a situation where 2 treatments can achieve the same results in terms of their effectiveness, but they have very different side effects. In this situation, it is really important to understand the patient’s preference as well as the doctor’s prior experience using each treatment. Together, the doctor and the patient can sort through all the possibilities until they settle on a plan that the doctor recommends and feels “right” to the patient.
When it comes to cancer clinical trials, introducing the idea of receiving a new or experimental treatment adds another dimension to these challenging and important conversations. Novel treatments that are only available through cancer clinical trials may represent exciting opportunities to access a cutting-edge treatment for 1 patient, but it may make another feel intensely vulnerable. Some of my patients are keen to hear about research but are reluctant to sign on to a study. Others feel safer taking a “standard” treatment but are reassured to know they still have an option to participate in research at a future date.
The most important thing for patients considering joining a clinical trial is to be well informed, to take the time to review options, and to discuss these findings with loved ones. I have found that some patients prefer to make a second appointment to review their options with their oncologist. At that visit, they often ask important and insightful questions that help them reach a final decision. As oncologists, we want to make sure that each patient feels they are making the right choice for them about treatment.
While the goal of cancer research is quite straightforward—to identify new and better treatments for future patients—current patients are looking for what will help them right now. Patients and researchers share the dream of curing cancer and finding better and safer treatments, but patients are making a decision that will affect their immediate future. To help patients come to an informed decision, we assure patients that clinical trials are highly regulated to keep patients safe. At the same time, we caution them that we cannot know with certainty all the long-term or late effects that a new treatment may cause. Moreover, we can’t even provide realistic estimates of whether they will personally benefit from the new treatment.
We know that many individuals are reluctant or even distrustful of any mention of clinical research. They may worry about receiving a placebo or inactive treatment, or they may fear experiencing suffering that could be avoided. However, in situations where there are simply no good available treatments, these misconceptions need to be addressed in a respectful conversation.
I often remind my colleagues that trust is not given but needs to be earned from our patients. Responding to the fears and worries patients have about clinical trials is important in creating a treatment culture that is oriented toward research. This is ultimately what will help us find better options to find and treat cancer.