National Cancer Survivors Day was June 5, 2016. As the Robert H. Lurie Comprehensive Cancer Center prepared for our annual Survivors' Celebration Walk and 5K, I reflected on the experiences of the patients I treat there. As a clinical psychologist, I am privileged to hear their innermost thoughts and feelings about what it means to survive cancer -- some of which they have not shared with their other doctors, friends or family.
Certainly, completing cancer treatment can be a joyous event and a cause for celebration. This is especially true for those patients who complete it with "no evidence of disease." However, cancer survivors can experience ongoing symptoms and concerns long after treatment. The same procedures and medications that help prolong lives can also result in pain, fatigue, physical and sexual dysfunction, infertility, and cognitive problems. Many survivors are not prepared for those realities and need to adjust to the notion that cancer is a chronic illness that they will need to manage over their lifetimes. With more than 40% of the over 15.5 million cancer survivors in the U.S. having been diagnosed 10 or more years ago, that journey can last well after treatment ends.
Most survivors eagerly look forward to completing cancer treatment. When that day finally comes, after experiencing an initial sense of relief and achievement, many are surprised that emotional distress can mount. What survivors can come to recognize is that the concentrated effort they applied to coping with their cancer diagnosis and getting through treatment also gave them a clear purpose and direction. Cancer treatments can be so physically and emotionally arduous that they require the bulk of patients' attention and energy, leaving little bandwidth to fully process the meaning of their experiences in the moment. So when treatment ends, cancer survivors can find themselves asking "what just happened?" and "what now?" The transition from straight-ahead, single-minded focus to "taking off the blinders" and reassessing one's life can be disorienting.
Survivors often talk about "picking up the pieces" of their lives after treatment, and sometimes they realize they cannot or do not want to put them back exactly as they were before cancer. A life-threatening illness can prompt many to reconsider their values. Patients frequently talk about not wanting to lose the clarity they gained about "what's really important."
However, making significant life changes in line with newfound priorities can be complicated by practical concerns about future employability and insurability as a cancer survivor, financial distress related to medical bills, and a competing desire to stabilize or "return to normal." Many cancer survivors also struggle with how they see themselves and relate to others. This can be brought on by treatment-related changes to physical appearance as well as what they learned about how they and those close to them handle adversity. Altogether it can be a time of great uncertainty as survivors try to find a "new normal."
Those of us who work in oncology also know that fear of recurrence is a very common concern for patients. Some cancer survivors discover that they actually miss the reassurance of taking powerful drugs and being closely monitored by health care providers (even after swearing they never wanted to see another lab coat again). Survivors can feel lost as they are called upon to return to greater self-sufficiency regarding their health. Often they express doubt about what symptoms are to-be-expected rather than something potentially serious that they need to report to their doctors.
For some survivors, especially those who are older, the end of treatment also prompts a return to caring for pre-existing health conditions that may have been neglected during their fight against cancer. "Beating cancer" and getting a new lease on life inspires many survivors to be healthier -- to exercise more, eat better, sleep more, and manage their stress. Unfortunately, as a group, they report not getting adequate guidance and subsequently often fail to successfully make these changes. Cancer survivors can spend significant time navigating a fragmented health care system and often do not even know which health care providers to see for their concerns.
In response to those needs, the last 10 years has brought clinical practice guidelines for survivorship care and an increasing number of dedicated survivorship programs within cancer centers. Centers accredited by the American College of Surgeons Commission on Cancer (which treat approximately 70% of cancer patients) must now provide patients completing cancer treatment with survivorship care plans that include comprehensive treatment summaries and tailored follow-up care recommendations. Oncology providers must deliver these care plans in ways that encourage cancer survivors to ask questions and better learn how to improve their health. Patients can also share cancer survivorship care plans with different doctors as a communication tool to promote coordinated health care. However, implementing care plan delivery and establishing other survivorship services can be a substantial undertaking that requires some restructuring of cancer care systems.
The number of cancer survivors in the U.S. is projected to reach more than 20 million by 2026. Unquestionably, more well-conceived services backed by sound research will be needed to meet their collective needs. At the crux of these efforts is the awareness that post-treatment survivorship brings unique challenges that are best addressed as a distinct phase of cancer care.