Author: Barbara Boughton
According to the American Cancer Society, more than 13 million cancer survivors now live in the United States, and that number is expected to grow to more than 18 million by 2022—largely due to the aging U.S. population and advances in treatment. While more people diagnosed with cancer are benefitting from the better outcomes that new treatments provide and are living cancer-free after treatment, an increasing number are also living with cancer for many years, as with other chronic conditions. As researchers and clinicians learn more about the needs of this large community of survivors, cancer care is evolving to address the ongoing issues that patients face through treatment and beyond.
Many cancer patients are surprised to learn that they are considered “survivors” from the moment they first hear the words “You have cancer.” This concept of survivorship, which defines a person as a cancer survivor “from the time of diagnosis and for the balance of life,” was developed by the National Coalition for Cancer Survivorship and is widely recognized as the standard definition within the cancer community.
Acknowledging that patients are survivors throughout active treatment and beyond provides a long-term view of their progression through cancer care, emphasizing the need for support throughout treatment, through the transition to recovery and continuing for the rest of their lives. Although the period of initial diagnosis and treatment can be overwhelming, this definition encompasses the physical and emotional challenges that may continue long after active treatment ends, which can include ongoing side effects of treatment, maintenance treatment, managing a fear of recurrence, emotional distress and transitioning to the “new normal” of life after cancer.
Increasingly, providing ongoing support to help patients address all of these issues has resulted in the creation of survivorship programs at hospitals around the country that are focused on helping patients navigate treatment and transition through recovery. The emergence of these programs is largely the result of a 2005 Institute of Medicine report titled From Cancer Patient to Cancer Survivor: Lost in Transition, which described the lack of best practices and guidelines for survivors’ ongoing care. To ensure consistent support, the report recommended that providers use survivorship care plans, which summarize a patient’s treatment throughout the journey and are then available for all care providers who subsequently work with that patient. In 2006 the American Society of Clinical Oncology and the European Society for Medical Oncology
released a consensus statement that reiterated the need for survivorship care
planning as a critical aspect of high quality cancer care.
In the years since, cancer care providers have been working to create survivorship programs that reflect this directive to provide consistent and continuous care for patients. These programs address such issues as screening and surveillance after active treatment, managing ongoing side effects of treatment and offering support for psychosocial issues. In the various versions of these programs that are being developed, the focus is on providing patients with planning and resources that will allow them to feel fully supported at all points throughout their care.
A Survivorship Care Program in Action At Cancer Treatment Centers of America® (CTCA), patients benefit from a survivorship program that addresses their needs from the moment of diagnosis. “Survivorship care is in every corner of our facility, and it continues when patients go back home,” says Tracy Whitworth, RN, CHPN, OCN, Survivorship Support Care Coordinator at CTCA® in Goodyear, Arizona. “Our goal is to not just get patients through treatment but also help them assimilate back into life—to thrive back into life,” she says.
Whitworth says that the need for support begins right away, and it doesn’t end when treatment is finished: “A cancer diagnosis can turn a patient’s world upside down. It can feel chaotic, especially at the time of diagnosis. That’s why it’s so important for each patient to have a support system and resources as they go through treatment and afterward.”
The commitment to seeing patients receive comprehensive support at CTCA is reflected in the Patient Empowered Care® model, wherein each patient is assigned
a care team that includes an oncologist, a care manager, a mind-body therapist, a nutritionist and rehabilitation therapists. This team supports the patient throughout treatment, and when active treatment ends, the team works to create a survivorship care plan. This plan, which outlines follow-up visits together with medical records—which patients have access to via online health records—allows patients to provide their primary care physician and any future care providers with their complete treatment history and all recommendations for ongoing care. Whitworth says that the care team will recommend that patients see a primary care physician who can help them follow these CTCA recommendations consistently after treatment.
In addition to providing patients with a clinical plan to follow once they leave active treatment, Whitworth says that a patient’s care team will provide ongoing support for other issues that arise in the wake of treatment. “We work to coach them in moving forward in life,” she says, “whatever that means for them.” The challenges that can follow treatment are different for each person, she adds, but can include difficulty transitioning back to work, financial struggles, emotional symptoms and ongoing physical challenges like fatigue and pain.
To address these challenges, Whitworth says that experts from the care team will work with the patient toward a solution. “We work with the patient’s physician to find out what the root cause of the problem is,” she says. Using the example of fatigue, a common ongoing side effect of treatment, Whitworth says that the team would be sure to address key factors like nutrition and exercise and educate survivors about the need to modify these factors during recovery. “We often recommend that patients exercise up to their tolerance level,” she says, “but many stop exercising during treatment,” which alters their abilities. By informing patients about these changes and recommending a plan to move ahead, the team can help ease the transition and ensure long-term health.
Part of a patient’s comprehensive survivorship plan at CTCA may also include complementary therapies like mind-body therapy to address ongoing side effects. “Mind-body therapists can often be very helpful by teaching relaxation, stress reduction and coping techniques,” Whitworth says. These experts are also available by phone once the patients return home. In addition, the care team may recommend naturopathic treatments, acupuncture, massage or pastoral counseling. For financial concerns that crop up after treatment, CTCA can often recommend organizations that can provide financial assistance.
At CTCA, Whitworth says, all survivorship care planning keeps the patient at the center: “We base our survivorship care on the patient’s needs. It’s about what the patient views as his or her challenges and how to surmount them.”