When patients are newly diagnosed with cancer, their focus is on getting the cancer out of their bodies. They may not be listening as well as they might under less stressful circumstances. This can result in an inability to absorb and comprehend all the information provided to them related to side effects from various treatments. Nevertheless, risks and benefits are typically discussed before a patient agrees to any form of treatment, whether it be surgery, chemotherapy, radiation, hormonal therapy, biologic targeted therapy, or immunotherapy.
Patients are usually relatively tolerant of the side effects of their cancer treatments. Although providers should make more of an effort to take measures to diminish these side effects, patients commonly accept these physical symptoms as part of what comes along with cancer care.
Once treatments are completed, however, patients—who are now being readied to move forward into the survivorship phase of their lives—are not as tolerant of lingering symptoms. Some research points to a belief on the part of some patients that when treatment is completed, side effects should end. Others believe patients’ tolerance for side effects plummets once they realize they are going to survive cancer; while receiving treatments, they may have been worried enough about their mortality that their tolerance for accepting side effects was much higher.
The bottom line, however, is that patients commonly experience lingering side effects for which they must be prepared. Such preparation is the responsibility of the provider, who must discuss these side effects and identify ways to diminish or stop them completely.
Whereas late effects of treatment are usually discussed with patients before treatment gets underway, they are perhaps not discussed in great detail. Providers may be concerned that if too much emphasis is placed on side effects, including late effects from treatment, patients may choose not to get the treatment they need.
When patients receive their survivorship care plan, we must discuss with them the late effects that may occur. It’s important to emphasize that late effects don’t always occur. If data are available to provide more specific information about the likelihood of these late effects, it will provide patients with better guidance and greater ability to more accurately self-monitor in the years to come. Do not be surprised if patients appear surprised or even angry when these potential late effects from their cancer treatments are discussed with them.
Another issue about which providers must be aware is the unknown nature of some of the late effects of cancer treatments. This stems from a lack of clinical trials focusing on this important element of care. Patients are not necessarily followed long-term, and given the shortage of oncology specialists in the United States, the ability to follow survivors for very long after acute treatment is going to continue to dwindle, making it even harder to track late effects from various treatments. Primary care providers are often completely unaware of known late effects that may occur, and of course are even less aware of those that have not been studied and reported in evidence-based research studies.
We therefore must empower patients so that they become good at self-monitoring and reporting symptoms that are different from their norm. We don’t want them to become hypochondriacs, but we do want them to discuss with their providers any new symptoms they develop that stay for several weeks without an explanation of their cause. Remind patients that they will likely still develop the usual chronic illnesses that others get, because having survived cancer does not prevent other disorders and diseases from happening, such as diabetes, heart disease, and arthritis, among others.
If you have the opportunity to promote clinical trials development that focuses on late effects from treatment, do so. Much remains for us to learn, and without this knowledge, patients are unable to be fully informed of the risks and benefits of treatments, or prepared psychologically and physically for what may lie ahead, long after the cancer is gone.