Perspective
Life After Cancer: New Challenges
By Nancy A. Ferrari, National Correspondent
Beating cancer is a wonderful victory, but cancer’s emotional and physical legacies often continue even when the disease is sent scurrying into the shadows. Cancer treatment may carry long-term physical and emotional effects-from changes in appearance, to compromised sexual function, to impaired cognition and mobility.
The National Institute of Medicine (IOM) formed a committee to look at the scope of medical and psychosocial issues facing cancer survivors, and propose ways to support appropriate health care and quality of life after the cancer crisis passes. The landmark report, From Cancer Patient to Cancer Survivor: Lost in Transition was released recently, and suggests that "treatment" ends when the cancer is in remission, yet survivors face an entirely new set of health and life challenges.
Katherine Puckett, a licensed clinical social worker, and the national director of mind-body medicine for Cancer Treatment Centers of America (CTCA), helps people face the sometimes difficult transition from patient to survivor. She noted that, for many, the emotional impact of surviving cancer takes them by surprise. Ms. Puckett said that it is not uncommon for patients to feel an overall uncertainty about how to proceed in life. "Often people devote a great deal of their time and energy getting through the cancer journey, so when they're done with treatment, they may not be sure what to do with themselves. It leaves a gap for many people, and even though it may be a happy gap, it can be hard to know how to proceed in a variety of areas," said Puckett. That "happy gap" is filled in part with new burdens. Worrying about the return of cancer is typical. "It can be hard to just enjoy life without ‘waiting for the other shoe to drop,’" said Puckett.
Though no one would wish to go through surgery, chemotherapy, or radiation, patients often form a supportive community among themselves and may feel very connected to the health professionals who care for them. "It’s common for cancer survivors to miss people, places, and things related to their treatment," said Puckett. "Sometimes, it's hard to leave and go back home." When treatment ends, many people feel that they face the new terrain of their lives with less support than when they were sick.
Tom Lay, assistant vice president for aftercare services at Cancer Treatment Centers of America, agreed with that assessment. "Far too often, once patients complete treatment, they are simply released from the care of their oncologist back to their primary care physician. We recognized that cancer patients are vulnerable in ways that are beyond the scope of most primary care settings," said Lay.
Puckett said these vulnerabilities range from concerns about health to social challenges. "Medically, people wonder what they should do and watch out for. There are social challenges as well. Sometimes family and friends, unable to deal with the person’s cancer, have pulled away, so survivors may be left feeling lonely or isolated. They may question whether they’ll be able to return to full time work. What it will be like if they do-will it be too stressful? Will they be accepted? And relationship-wise, family roles may have shifted and the aftermath of treatment may affect intimate relationships," said Puckett.
According to the report, From Cancer Patient to Cancer Survivor, it is possible to avoid or limit the impact of such effects. The IOM recommends a "cancer survivorship plan" as the primary tool for patients to receive appropriate medical care, and to embrace a healthy lifestyle. Such a strategy includes a plan to check for recurrence and attention to the long term physical and emotional effects of surviving cancer. The IOM identified four "essential components" of cancer survivorship care:
- Averting serious long-term effects of treatment, including new cancers.
- Monitoring for the spread or recurrence of the original cancer -- and for the presence of new cancers -- as well as watching for late physical and psychosocial effects of cancer treatment.
- Addressing consequences of cancer and its treatment. These include not only medical concerns -- for example lymphedema or sexual dysfunction -- but also factors that affect quality of life. These run the gamut from pain and fatigue, to emotional distress of patients and caregivers, and to problems surrounding employment, insurance, and disability.
- Meet the needs of cancer survivors.
The IOM committee recommends that the cancer survivorship plan be put in writing by the clinicians responsible for coordinating the patient’s cancer treatment. The plan should provide information on the patient’s cancer, the treatments he or she received, and the potential long-term consequences of all therapies employed. It should also include specific recommendations regarding appropriate follow-up care, i.e., what tests, when, and how often. The course of action should also address how best to maintain health and well-being going forward. Patients should also be informed of their legal rights regarding health insurance and employment, and identify appropriate community resources.
Lay said that a proactive aftercare program offers more than vigilant surveillance for recurrent or secondary cancers. "It takes that vigilance to a different level," he explained, "At Cancer Treatment Centers of America, we pay attention to the effects of cancer and cancer treatment in a holistic way. We prepare survivors for, physical and emotional effects that go beyond recurrence."
Lay said the CTCA aftercare program includes five specific priorities:
- Aftercare is introduced early on in the patient’s experience. Planning for recovery starts when treatment starts.
- Once treatment is completed, regular clinical assessments identify any late or long-term effects.
- During clinical assessments, patients review their care plans with CTCA staff. These plans include a summary of the person’s treatments and any attendant short-term and long-term risks.
- Regular communication with patients and staff conveys up-to-date research and innovations-and raises awareness of the importance of aftercare.
- A Care Partner Network identifies practitioners around the country to provide the coordinated care necessary to follow through on the survivorship plans developed at CTCA. This enables patients who travel to CTCA for treatment to have the professional support they need to carry out those plans once at home.
The IOM points out that research is needed to evaluate the benefits and costs of survivorship plans and how they affect health care practice-including how well they work for patients and clinicians. The report acknowledges that while there are no clear data on the potential benefits of survivorship plans, they "simply make sense" and are likely to improve care. Lay agreed. He has seen the benefits. "We've had the good fortune, and foresight, to launch our aftercare program with a survivorship plan in place. In our experience, this definitely improves patient care. Our patients, as well as our staff, are more educated about the effects and risks of treatment and are more attuned to addressing survivor needs," said Lay.
-- Nancy A. Ferrari is a national correspondent, based in Boston, for Cancer Treatment Research.