It’s not uncommon for cancer patients to say they classify themselves as a cancer survivor by having lived at least 5 years past the completion of cancer treatment. What these patients—and some healthcare professionals—don’t know is that someone with cancer is considered a survivor at the time of initial diagnosis. Survivorship continues with living through and beyond cancer treatment. The goal is to move toward an optimal quality of life with long-term survival.
Recent years have sharpened the focus on long-term cancer survivorship, which includes emphasizing quality, consistency, and advocacy for best care practice. Providing survivorship care requires expertise in oncology and adherence to evidence-based guidelines. This care consists of four main activities: disease surveillance, recognition of cancer recurrence, ensuring adherence with healthcare maintenance, and education of long-term effects of cancer therapy.
To best provide care, Greenville Health System Cancer Institute (GHS-CI) implemented a long-term survivorship care model appropriately named the Lifetime Clinic (LTC) within its Center for Integrative Oncology and Survivorship (CIOS). The LTC is led by a full complement of oncology healthcare providers and staff.
We’re two of the nurse clinicians for the LTC. In this article, we’ll share insights about long-term survivorship and describe how a nurse practitioner (NP)-led model, combined with coordination and collaboration with other healthcare team members, provides an effective way to address the needs of each cancer survivor.
Cancer survivorship defined
Cancer survivorship has three phases: acute survivorship, defined at cancer diagnosis and while the patient is receiving cancer therapy; extended survivorship, defined as a duration of time measured in months after completion of cancer therapy; and long-term cancer survivorship, otherwise known as permanent cancer survivorship, defined as the period of time measured in years after completion of cancer therapy
Each stage contains specific patient needs that demand individualized care. As patients advance through each stage of survivorship, their needs transform physically, emotionally, and psychologically. These multifactorial transformations also must be addressed from an educational and supportive perspective. Some common long-term survivorship issues include bone health, hot flashes, lack of exercise, weight gain, cognitive dysfunction, cardiac effects, and lymphedema; healthcare maintenance and prevention of secondary malignancies also are important.
Putting a plan in place
The 2005 Institute of Medicine (IOM) report “From Cancer Patient to Cancer Survivor: Lost in Transition” recommends that each survivor receive a survivorship care plan to improve quality of life. One goal of this plan is to educate and guide the patient through long-term cancer survivorship care that is patient centric. The plan describes the patient’s diagnosis, treatment, and potential long-term sequelae. Education and promotion of healthy lifestyle behaviors are also necessary for prevention of secondary malignancies, and are a primary focus of education. Additional topics discussed include the importance of adherence to recommended follow-up, physical examinations, cancer surveillance, and diagnostic testing schedules.
Providing the patient with the survivorship care plan document should include an explanation to the patient that this document will serve as a means of communication to the patient’s primary care physician and other healthcare team members. The survivorship care plan is a living document of the entire cancer trajectory. Family members of the cancer survivor can benefit from this document as a means to communicate familial patterns of cancer and provide pertinent data to their healthcare providers. The document is available to the patient at anytime, as the plan becomes a permanent part of the cancer survivors’ health record.
This type of plan is a vital component of the services provided in the LTC.
Patients are referred to the LTC by medical, radiation, and surgical oncologists. The patient agrees to the transition before it’s made. The typical patient has early stage cancer, has a low risk of recurrence, and is generally more than 3 years out from diagnosis.
At first, the patient may feel unsure of complete transition to the LTC, and instead choose a slow transition from the oncologist to the clinic. A shared care model may be offered to the patient, which gives the patient the ability to toggle visits by the primary oncologist and LTC clinicians.
It’s important for patients to understand that the primary intention of transition is to connect them to integrative opportunities. Another advantage of the LTC is unlimited access to educational and programmatic opportunities in CIOS that focus on healthy life style changes, and expertise of oncology centric providers and clinicians who are comfortable addressing cancer survivorship issues.
Patients are followed for life, maintaining their preventative health maintenance and cancer screening per National Comprehensive Cancer Network guidelines. Should a patient have a recurrence, the NP immediately transitions him or her back to the oncologist. The transition is seamless because the patient continues as an active patient of the cancer institute.
It takes a team
In the LTC, the focus is on health, wellness, and prevention of future cancers. A review of the health record is completed to ensure the patient is current on all preventative health maintenance, as well as regular screening for recurrence or secondary cancers with diagnostic exams such as mammograms, CT Scans, colonoscopies, bone density scans, and appropriate laboratory studies.
Accomplishing the goal of health, wellness, and prevention takes a team. The LTC team includes a medical oncologist, four oncology NPs, two oncology certified nurse navigators, and support staff, including a registered dietician and two licensed clinical social workers.
The NP’s role in the LTC is to assume oncology follow-up for the patients who have been referred. NP visits differ from regular oncology follow-up visits. LTC visits are scheduled for 45 minutes, with the first 15 minutes spent with the nurse navigator followed by 30 minutes spent with the NP.
After a health maintenance history is obtained and test results are reviewed, a discussion takes place regarding the patient’s perspective of his or her present health status and quality of life. The discussion then expands to address any concerns. The NP identifies deficits in areas of healthy lifestyle choices and collaborates with the patient about strategies. (See Smoking cessation.)
Smoking cessation is a challenge for some survivors. Each advanced practice registered nurse (APRN) is a certified Quit Smart smoking cessation counselor and provides smoking cessation visits to patients who may be self-referred or referred by their provider. The CIOS smoking cessation program also has a dedicated Quit Smart certified nurse navigator who teaches the patient about smoking cessation, provides support, and tracks the patient’s progress. The patient may be referred by any GHS physician for smoking cessation, or may self refer if they belong to the GHS system. Upon referral, the patient is provided a consultation to discuss the program and is supported fully by the NP and the nurse navigator on their journey to become tobacco and nicotine free.
The nurse navigator is an oncology certified registered nurse who serves as a clinician, care coordinator, and educator for each cancer survivor. The nurse navigator works collaboratively with the ARNP, is responsible for tracking the progress of each patient throughout their journey of long-term cancer survivorship, and coordinates care with other healthcare providers such as radiologists, pharmacists, dieticians, social workers, and counselors.
Social workers provide assessment and individual counseling. They also maintain a robust calendar of activities available for patients to stay engaged, and therapeutic offerings such as mindfulness-based stress reduction classes, yoga, support groups, a walking club, book club, integrative oncology classes, nutrition classes, and music therapy; all programs are free. Social workers also tell patients about Cancer Support Community, where survivors can connect with local resources, such as support groups, classes, and social activities.
Weight gain is a common complaint among cancer survivors. A registered dietitian is available for 1:1 nutritional counseling. The patient also may attend any of the weekly Healthy way educational classes offered, which are free for all cancer survivors. A plant-based diet is encouraged to provide cancer reduction benefits. Education on this topic is provided at each office visit.
Recognizing that genetics is an ever-evolving field with new information developing each year, the family history of any new onsets of cancer is updated annually. If the family history has changed with new diagnoses that increase the concern of a presence of genetic mutations, the patient is referred to the genetic counselor for a consultation to assess the need for genetic testing.
Mark O’Rourke, MD, is a medical oncologist for the GHS-CI and the medical director for CIOS. O’Rourke provides integrative oncology visits to help cancer survivors regain their full physical, mental, emotional, and spiritual health after cancer treatment. O’Rourke has a special interest in integrative oncology addressing the full range of a person’s experience with cancer, including exercise, nutrition, mind-body therapies, social support, and mental and spiritual health.
Communication and collaboration
Communication among all providers is important and is accomplished by providing the LTC visit record to all providers on the patient’s team. Challenges exist with regard to electronic communication, because electronic health record software varies within GHS-owned physician offices, outpatient and inpatient facilities, as well as non-GHS providers. To expedite and coordinate delivery of the LTC visit note, the GHS medical records department distributes it to each physician on the patient’s medical team once the note has been transcribed.
If a patient presents with a complaint or symptom suspicious of recurrence, the NP orders the appropriate diagnostic tests and communicates the concerns with the patient’s primary oncologist to decide on the next appropriate step. After testing is complete, the patient is quickly scheduled for a follow up discussion with the NP or medical oncologist.
Late effects of cancer therapy
Late effects of cancer therapy, caused by surgery, chemotherapy, radiation, and hormonal therapy, can occur months or even years after treatment ends. Examples of late effects include:
- anthracycline based chemotherapeutic agents and mediastinal radiation, which can impair cardiac function by weakening heart muscle.
- axillary node dissection for breast cancer, which can cause lymphedema in the upper extremities
- physical problems such as neuropathic pain, sexual dysfunction, pulmonary issues, cognitive changes, sleep disorders, fatigue, and weight gain
- psychological problems such as anxiety, depression, fear of cancer recurrence
Patients should be assessed for late effects and monitored closely. Survivors need to know about late effects so they understand the need for self-care, including promptly reporting early signs and symptoms to the oncology provider.
Should signs or symptoms of late effects occur, the ARNP can intervene, treat, or make a referral to the appropriate specialist.
Long-term care for long-term health
As medical research continues to improve survival statistics, long-term physical and psychological survivorship issues continue to be identified. Clinicians who specialize in cancer care can help survivors steer a path to health by providing healthcare maintenance services, educating patients about possible effects, and engaging in meticulous cancer surveillance. These actions will help patients achieve an optimal quality of life.
American Society Clinical Oncology. About cancer survivorship. www.cancer.net/survivorship/about-cancer-survivorship. 2015.
Institute of Medicine. Cancer survivorship care planning. http://iom.edu/~/media/Files/Report Files/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition/factsheetcareplanning.pdf. 2006.
Institute of Medicine. From cancer patient to cancer survivor: Lost in transition. http://www.nationalacademies.org/hmd/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx. 2013.
Patricia Leighton is a survivorship and Lifetime clinic nurse navigator and LeAnn Perkins is a nurse practitioner. Both work at the Greenville Health System Cancer Institute Center for Integrative Oncology and Survivorship in Greenville, South Carolina.