Life After Cancer
“Survivorship begins at diagnosis, and so does patient support,” asserts Carol Flanagan, RN, MSN, OCN®, clinical coordinator of NorthShore University Health System’s Living in the Future Cancer Survivorship Program at Kellogg Cancer Centers in Illinois.
“I began my oncology nursing career more than 30 years ago, and survivorship was thought of as that magic five-year marker. Eventually, the definition changed and National Cancer Survivors’ Day celebrated the journey of all those with a cancer diagnosis.”
With a look to the very near future, in 2012 the American College of Surgeons (ACOS) outlined specific requirements for cancer centers to have in place to better meet the unfolding needs of patients with cancer who are surviving well beyond the initial treatment phase.
The Survivorship Care Summary and Plan
The revised ACOS standards include a requirement that cancer centers have a process for providing a summary of care completed, and healthcare follow-up recommendations, to all patients who are completing oncology treatment. This standard was borne out of concerns that survivors, entering a new, different phase of health care, could get “lost” in the many transitions during this crucial time.
Many centers are already providing patients with treatment summaries and future health care recommendations, even without a formal program in place.
“Following treatment completion, our patients receive a written treatment care summary. This summary, which is also sent to the patient’s primary care physician, describes in detail, the type of treatments, drug names, doses as well as any side effects experienced and changes in treatments,” explains Lynne Beckstead, RN, cancer nurse navigator at Good Samaritan Hospital in Kearney, NE.
In addition to summary information, Flanagan notes that “cancer surveillance guidelines are incorporated into the survivorship care plans we give to our patients.
“The challenge is to ensure that survivorship is an expected component of care, not merely a supportive extra,” she explains.
The Role of the Oncology Nurse
Flanagan says that part of her job involves helping patients with cancer successfully move forward after completing treatment. She meets with patients who have completed acute treatment and reviews the treatments they received, as well as the short-term, long-term, and late toxicities they might expect.
“Although most patients received this information at the time of diagnosis and initial treatment planning, many are not able to assimilate this during the crisis of hearing the word ‘cancer,’” Flanagan explains. “Patients receive a customized document, and they are encouraged to share it with all members of their healthcare team, including primary care physicians, eye doctors, dentists, etc.”
As Beckstead says, “We want to keep everyone in the loop!”
She adds that it’s also the oncology nurse’s role to provide survivors with a continued lifeline. “We can assist the patient through the entire cancer journey and into survivorship. I think it’s important that patients understand and can be reassured that our support and encouragement doesn’t end with the last treatment.”
Life After Cancer Online Community Connects Patients to Others With Similar Illnesses
“During treatment, many patients will say, ‘When I am done with treatment, I won’t have to think about this cancer again,’” Beckstead explains. “The reality is, having a cancer diagnosis, even when cured, doesn’t just go away.”
She adds, “Patients may also go through a grieving process following treatment because their daily routine of appointments is over. They may be left feeling, ‘Now what do I do?’”
Similarly, Flanagan maintains that “one of the most frequent questions I hear when I meet with patients at the end of their treatment is ‘What doctor do I call and when?’” She says that she describes herself as the “what now?” nurse.
According to the Centers for Disease Control, approximately 66% of people diagnosed with cancer are expected to live at least five years following initial diagnosis. So in addition to the care summary and expected long-term effects, survivorship plans also often include lifestyle recommendations.
Flanagan’s institution offers Survivorship 101, a series of programs that address survivorship concerns such as nutrition, insurance, employment, exercise, and intimacy. “Families are an integral part in this. Patients and families realize that it isn’t over when it is over,” she adds.
There are challenges, though, to successfully compiling a comprehensive care summary at the end of treatment, Beckstead acknowledges. “Our cancer center and private practice medical oncology offices do not have an integrated electronic health record; this makes data collection for a comprehensive treatment summary difficult.”
“While it is important to celebrate survivorship, we must also understand the unique health and psychosocial needs of cancer survivors in the short, long, and late terms of their survivorship,” Flanagan says.
“As we add new drugs and treatments to our arsenal, what will the consequences be to the long-term health of those treated? In concert with the needs of patients, how do we address the knowledge needs of healthcare providers?
“This is an exciting time in cancer care. Traditionally we have assisted patients in developing a plan of care at diagnosis; now we can provide them with a plan, a road map for the survivorship journey as well.
“As an oncology nurse, I am honored to be part of this emerging specialty, helping people create a new normal and making healthy lifestyle choices,” Flanagan declares.
You Tell Us! How does your organization provide survivorship care summaries and plans to patients?
The Journey Forward website also has survivorship resources for both healthcare providers and survivors.
Deborah Lindberg, BSN, MBA, CCRC, is the clinical research administrator for oncology, pulmonary, and gastroenterology clinical trials at the Hatton Research Institute of TriHealth in Cincinnati, OH.