Defining Survivorship Care
The terms “survivorship” and “survivorship care” are intrinsically linked with the label “cancer survivor.” According to the National Coalition for Cancer Survivorship (NCCS), which defined the term, a person is a survivor from the point of a cancer diagnosis through the balance of life.1
As the oldest survivor-led cancer advocacy organization, NCCS sought to change the image of a person with cancer from “victim” to “survivor.” To help change this perception, NCCS identified the skills needed to navigate a cancer diagnosis and developed patient resources to teach these skills. Finding information, communicating, decision-making, problem-solving, negotiating, and advocating for one’s rights are the 6 essential elements that patients can utilize to incorporate their preferences and goals into their care and in some way gain some control as they face a life-threatening illness. Although often challenging to achieve, when patients are able to identify as, and are recognized as, the central member of their care team, they become more adherent to treatment, have less decisional regret, and have greater satisfaction with their care. This is the ultimate form of patient engagement. Patient engagement during treatment can result in more effective symptom management, improved adherence to recommended treatment, and improved outcomes. Patient engagement in survivorship care supports the survivor in managing posttreatment care, in identifying late effects of treatment, and/or with ongoing maintenance therapy. An engaged patient does not play a passive role in treatment but is actively involved in planning the care and in behaviors leading to improved outcomes.
Nurse and patient (lay) navigators serve an important role within a cancer care team during diagnosis, treatment, and survivorship care. They provide care coordination; assess patients’ medical, psychological, and practical needs; address barriers to care; provide education; and refer to and coordinate access to services and specialists. Because cancer care is complicated and patients require multiple treatment modalities with providers often in more than one location or geography, the navigator serves as a quarterback, guiding the patient along the path of care. The navigator is responsible for supporting physician-directed care by assessing patient needs, including side effect management, emotional or spiritual distress, transportation needs, and insurance or financial issues, just to name a few. Patients experience many of these challenges beyond active treatment, and so the role of the navigator continues into the phase of cancer survivorship care.
Trajectory and Changing Patient Needs
Cancer survivorship includes several phases. Acute survivorship is the period from diagnosis through active treatment. Extended survivorship occurs in the period just after primary treatment ends and is referred to as the transition from active treatment. Permanent or long-term survivorship is the last phase that extends through the balance of life. In 1985, cancer survivor and physician Fitzhugh Mullan, MD, wrote an article published in The New England Journal of Medicine entitled “Seasons of survival: reflections of a physician with cancer” where he discussed the concepts of cure, survival, and how the stages of survival affect patients physically and emotionally.2 In his essay, Dr Mullan suggested that survivorship is not 1 condition, but many. He described how, as he was going through the acute survivorship stage, he faced the physical and mental challenges of the disease and treatment and the particular joys of being a new father. Surviving cancer was not just managing the disease, but also living his life. As a strategy for addressing the distinct needs of cancer survivors, Dr Mullan argued for dedicated research focused on survivorship. He also recommended that patients speak up to raise awareness about their experiences and to engage in building a cancer survivorship network.
Cancer presents patients with multiple challenges during treatment and along the path to recovery, which demands adaptation and personalization. A cancer diagnosis most often comes without warning and thrusts the patient into a life-threatening situation. The patient faces a new reality that requires a new vocabulary; learning about the disease; decision-making about providers and treatments; and anticipating how this may affect work, family, finances, and personal life. The period before treatment starts can be confusing and scary as the patient undergoes biopsies, imaging, and other predictive and prognostic testing.3 Once treatment starts, the busy schedule of medical appointments serves to organize and focus the patient from one treatment modality to the next.
For patients treated with curative intent, primary treatment will include evidence-based cancer care or participation in a clinical trial that may consist of surgery, radiation therapy, and adjuvant or neoadjuvant chemotherapy, sometimes with adjuvant treatment prescribed to reduce risk of recurrence. Patients with advanced cancer have ongoing cancer survivorship needs where the cancer is treated as a chronic illness with ongoing monitoring and/or treatment and often the option of participation in a clinical trial. During the acute phase of care, patients focus on making decisions about providers and treatment, overcoming barriers to care (transportation, financial costs, insurance coverage, etc), problem-solving around work and family responsibilities, and managing the side effects of treatment. And as Dr Mullan pointed out, the cancer experience takes place in the context of other aspects of a person’s life, which may be providing additional stressors or support and joy.
Navigators are key to supporting patients during the acute stage of survivorship. Nurse and patient (lay) navigators can provide support to improve quality of life and to coordinate care for patients regardless of the stage of disease. During the acute stage, navigators provide education, assess medical and psychological needs, coordinate care, make appropriate referrals, and connect patients with resources. Providers and other staff are focused on their scope of practice and their role within the cancer care team. The navigator advocates and guides the patient and their caregivers through the various treatment modalities and views the overall trajectory. Navigators can assist with patient goal setting and advocate with the care team for the inclusion of patient preferences in the cancer and supportive care plan. In this role, the navigator can provide useful information and perspective about the patient to the team in tumor boards, clinical rounds, disease working groups, and the outpatient clinic. Documentation of their actions and communication with the patient are critical elements of the patient’s medical record. The following describes the role of navigation during the acute phase of survivorship.
Navigation During Acute Phase of Survivorship
- Provide education to the patient and their caregivers
- Define complicated medical terms and ensure an understanding of the diagnosis
- Educate patients about the treatment plan, required providers, imaging, prognostic and predictive testing, etc
- Guide patients from one treatment modality to the next
- Remove barriers of access to care
- Facilitate/coordinate appointments
- Address insurance questions and link with financial support programs
- Address finances, employment, concerns surrounding disability, and other insurance questions
- Assess and facilitate supportive care needs, including referrals to social work, psycho-oncology, psychiatry, and support groups
- Assess and facilitate transportation and logistics
- View the patient as a whole person, including assessment, management, and referral
- Engage the patient to define life and treatment goals, preferences, and realistic hopes for the future
- Identify cultural and/or sexual identity preferences
- Assess health literacy
- Identify patients who would benefit from pre-habilitation and cancer rehabilitation
- Assess and refer to oncology dietitian
- Assess and refer to palliative care for side effect management and care across the balance of life
- Administer or facilitate distress screening and make appropriate referrals
- Refer to integrative health and mind-body programs such as resilience training, acupuncture, yoga, meditation, Reiki, and expressive art therapies
Transition of Care: Distress Screening
As patients transition along their cancer care trajectory, there are several “tools” that are helpful, and also part of national accreditation standards, that foster risk stratification of patient/caregiver needs.
Distress Screening or Completing a Comprehensive Needs Assessment
Assessment of physical, psychosocial, practical/financial, and existential needs is considered an essential part of cancer care. As outlined by the Institute of Medicine (IOM) of the National Academy of Sciences4 and the National Comprehensive Cancer Network (NCCN) Guidelines,5 there are numerous sources of psychosocial distress associated with cancer and its treatment. These sources of distress may include a lack of information or skills necessary to manage their cancer; emotional problems, such as anxiety and depression; a lack of transportation or other resources; and disruptions to work, school, and family; and are believed to contribute to poor adherence to prescribed treatments and a slower return to health. The main goal of screening is to maximize access to medical and supportive care for patients and their caregivers. Provider engagement in the screening process helps to identify current issues or risk factors and barriers that may prevent or hinder access to care. The cancer care team should identify, monitor, document, and manage distress across all phases of survivorship. It is considered best practice to address the psychosocial health needs of cancer patients and survivors, and to provide adequate psychosocial health services. However, cancer care teams do not consistently identify, manage, or refer patients and survivors to services that could address their physical and psychosocial needs. A comprehensive distress screening or needs assessment not only assists in the identification of unmet needs but can foster communication between the cancer care team and the patient/survivor.6 There are numerous examples of screeners available, and one of the most commonly referenced is the NCCN Distress Thermometer and Problem List.7 The patients will rank their level of distress over the past week on a 10-point scale, from “No Distress” to “Extreme Distress.” This tool is a single snapshot of distress that requires context. The supplemental Problem List allows patients to indicate problems they have experienced in the past week and elaborates on the level of overall distress. It is important to complete a baseline assessment and then to readminister the screener at defined time points, especially at times of transition, when anxiety and uncertainty may be heightened. In addition, it is important that whatever tools are utilized that documentation be completed in the electronic health record, a “circle of care” be documented indicating if the issue was managed, a referral was made, or the patient declined follow-up. Furthermore, if a domain or need is assessed, the team must have a follow-up option in place for the patient/survivor. It is poor practice to identify a patient/survivor need and not have an evidence-based management strategy or adequate referral source as a next step. To manage both patient/survivor and care team needs, a screening process should be defined and a workflow mapped out at various stages of the cancer control continuum.
Extended Survivorship (Transition from Active Treatment)
With improvements in early detection and advances in treatment, patients are living longer through and beyond cancer. As of January 1, 2016, the American Cancer Society (ACS) reported that there are nearly 15.5 million cancer survivors living with or through their disease in the United States, with estimates of 20 million by 2026.3 Based on current data, 67% of all cancer patients will live 5 years after diagnosis.8 Surviving cancer and its treatment leaves patients with ongoing medical and psychological care needs. With the increasing number of cancer survivors, research on this distinct phase of survivorship has increased, offering insights on the patient experience and evidence on best practices in care delivery. In 2005, the IOM published the consensus report From Cancer Patient to Cancer Survivor: Lost in Transition,9 noting the increasing number of cancer survivors and lack of awareness about the impact that cancer and its treatment have on the medical, functional, and psychosocial aspects of their lives. The report defined quality healthcare and made recommendations on how to improve survivors’ quality of life through best practices and policies.
The report’s key recommendation was that healthcare professionals should provide a survivorship care plan (SCP) to patients completing treatment. An SCP is a document that describes the patient’s diagnosis, including pathology, genetic/genomic testing, and the cancer care team, and a complete treatment summary (surgery, chemotherapy, immunotherapy, hormone therapy, and radiation) and spells out follow-up guidelines based on late effects of treatment and well-person care, including imaging, testing, follow-up appointments, and referrals. The SCP also makes lifestyle behavior recommendations to reduce risk of recurrence and prevention of second cancers.
Typically, a member of the cancer care team, specifically an advanced practice provider, a physician (oncologist, physician, radiation oncologist), or a certified navigator, reviews the SCP with the patient, discusses management of any late and long-term effects of cancer treatment (Table), and outlines the evidence-based follow-up plan for surveillance. The IOM recommends that a copy of the SCP is shared with the survivor and the primary care provider to facilitate coordination of care regarding cancer surveillance and the patient’s other healthcare needs. There are many SCP examples and templates available, and most accreditation standards are fulfilled by including the data elements included in the American Society of Clinical Oncology (ASCO) SCP templates.10 It is important that these elements be incorporated into the electronic health record. Unfortunately, to date, there is little evidence demonstrating the value of an SCP, but research is under way.
Navigation During the Transitional Phase of Survivorship
The specific type of cancer and stage of disease drive the goals of care and define whether treatment will be delivered with curative intent or for controlling what is considered a chronic disease. Regardless of the treatment goal, survivorship care needs are ongoing, including medical monitoring, as well as addressing practical and psychosocial concerns. In addition, incorporating prevention and lifestyle behaviors to decrease risk of recurrence or disease progression often become a priority for survivors.
Once the active treatment phase of survivorship is completed or patient is in maintenance therapy, many patients experience mixed emotions. While finishing treatment is something to welcome and celebrate, many individuals report that they also feel lost, anxious, or traumatized. The process of treatment provided a defined path, with frequent and regular contact with healthcare providers. Once treatment is complete or visits become less frequent, the path ahead may be unclear. Family members, friends, and employers may assume that life can resume as usual, but the survivor may not be ready or able to do that. The survivor may have lingering effects of cancer treatment and questions about how to manage their healthcare needs moving forward, how to manage fear of recurrence, what signs or symptoms of a new or recurring cancer to look for, how to find meaning from the cancer experience, and perhaps how their life priorities may have changed.
With growing evidence that cancer survivors have ongoing needs after adjuvant treatment and emerging guidelines supported by national accreditation standards surrounding best practices, cancer centers recognize their obligation to offer survivorship programs and services. Navigators continue to have a key role in guiding survivors in their care, and this continues through this transition phase and into long-term survivorship. Depending on how navigation is structured within an organization, a navigator may fill a variety of roles across the phases of survivorship care. A navigator may meet patients when diagnosed and follow them throughout their treatment and into survivorship. Other navigators may work with the patient during a single phase of treatment (ie, only in surgery or medical oncology) or phase of care (active treatment, survivorship, palliative care). The navigator can provide context regarding the patient’s life and treatment goals, as well as details about the cancer experience, including medical and psychosocial impacts, family history and risk factors, and other health conditions that are relevant to the SCP and to providing survivorship care.
Whether conducting a distress screening or meeting with the patient at their final treatment, the navigator can assess a patient’s need for medical, practical, or psychosocial support and provide necessary referrals. The navigator may also take the opportunity to guide the patient to information and resources at the cancer center and in the community, web-based resources, or clinical trials that can support the patient in making healthy lifestyle changes.
Patient Navigation During the Intermediate Phase of Survivorship
- Facilitate a comprehensive SCP
- Inform the survivor about the goals of an SCP
- Collect needed records to complete the SCP
- Make an appointment or deliver an SCP
- Ensure documentation reporting the completion and delivery of an SCP
- Provide education and coordination of care
- Educate and coordinate evidence-based follow-up care with providers, imaging, and other testing
- Encourage adherence to follow-up guidelines specific to healthcare utilization, maintenance therapy, etc
- Inform survivors about resources for improving their lifestyle
- Assess survivors’ current medical concerns
- Refer and schedule with specialists and providers
- Address needs and risks of the patient as a whole person, through assessments and referrals
- Administer or facilitate distress screening
- Refer to palliative care for side effect management
- Refer to cancer rehabilitation
- Refer to oncology dietitian
- Refer for cancer genetics
- Refer to supportive care: social work, psychology, psychiatry, and support groups
- Refer to a financial counselor
- Refer to spiritual care
- Refer to integrative health and mind-body programs such as acupuncture, yoga, meditation, Reiki, and expressive art therapies
National Accreditation Standards and Recommendations
The IOM identified 4 domains of survivorship care that are needed to comprehensively address ongoing medical needs after primary treatment; these include prevention, surveillance, intervention, and coordination. To operationalize the IOM recommendations related to these domains, the Commission on Cancer (CoC) has established an accreditation standard that requires cancer centers to provide SCPs to survivors treated with curative intent.11 Further, a number of professional organizations, including ASCO,12 NCCN,13 and ACS offer resources to aid healthcare professionals in summarizing follow-up care. Best practices and considerations to stratify a survivors’ risk for recurrence or new primary cancers, late effects, distress screening, rehabilitation, and management of comorbidities can assist providers in delivering appropriate care to each survivor.
The responsibility to deliver survivorship care is a multidisciplinary approach and should not just fall on the shoulders of healthcare professionals. Patients must assume some responsibility for adhering to follow-up guidelines and utilize the SCP as a road map. As a patient makes the transition from acute survivorship, engagement with, and management of, their own healthcare needs remain vitally important. The coordinating provider must offer education and direction regarding the survivorship plan, and the patient has the autonomy to follow that guidance.
Incorporating the IOM Domains of Survivorship Care: Prevention, Surveillance, Intervention, Coordination
The IOM defined survivorship as “a distinct phase of care for cancer survivors” that includes 4 significant components:
- Prevention of cancer recurrence, any new cancers, or late effects of treatment
- Surveillance for cancer recurrence, spread, or secondary cancers, and assessment of late or long-term effects
- Intervention to manage consequences of cancer or late and long-term effects of treatment
- Coordination of care between specialists and the primary care provider to address all of the patient’s healthcare needs
Domains of Follow-Up Care: Prevention
Although cancer survivors have only a 1% to 3% risk for getting a secondary cancer (unless a survivor has a germline mutation, then the risk increases to 65%), prevention is an important part of follow-up care. Cancer survivors should be advised to make healthy lifestyle changes, including quit smoking or other tobacco use; achieve and maintain a healthy weight; consume a lower- to moderate-calorie diet, increasing the number of fruits and vegetables; incorporate exercise, including cardiovascular and strength training; follow guidelines for colorectal cancer screening (which includes removal of precancerous polyps); wear sunscreen and undergo regular skin cancer screening; undergo annual mammography; and undergo regular well-person care with a primary care physician. An SCP can serve as a blueprint for prevention and surveillance based on evidence-based guidelines.
The goal of surveillance is to detect a recurrence at the earliest possible time for better outcomes. Several organizations have established evidence-based cancer screening guidelines specifically for patients with a cancer history. The ACS3 has created prevention and screening guidelines to direct patients, oncology professionals, and primary care providers. In addition, the ACS published “Nutrition and Physical Activity Guidelines for Cancer Survivors.”
The NCCN13 has established detection, prevention, and risk reduction guidelines for breast, colorectal, lung, and prostate cancers, as well as guidelines to assess genetic or familial high-risk cancer. NCCN has drafted general survivorship guidelines that should be used in conjunction with the disease-specific guidelines and palliative care guidelines. The survivorship guidelines identify needs that fall into the same 4 IOM domains of prevention, surveillance, intervention, and coordination of care. Specifically, the guidelines cover:
- Treatment-induced cardiac toxicity
- Anxiety and depression
- Cognitive function
- Menopause-related symptoms
- Sexual function
- Sleep disorders
- Preventive health
- Healthy lifestyle behaviors
- Physical activity
- Nutrition and weight management
- Supplement use
- Immunizations and infections
ASCO,14 the leading professional oncology organization, has created guidelines for surveillance for cancer recurrence for breast and colorectal cancers:
- ASCO Guideline Update: “Breast Cancer Follow-Up and Management after Primary Treatment”
- ASCO Guideline Update: “Colorectal Cancer Surveillance”
Domain of Follow-Up Care: Intervention
After active treatment is completed, survivors may experience late and long-term effects of the cancer diagnosis and its treatment (Table). Medical issues may include neuropathy, fatigue, cognitive changes, joint pain, lymphedema, range of motion limitations, early-onset menopause, and sexual dysfunction. Patients may face emotional issues such as anxiety, depression, fear of recurrence, and body image problems. Additionally, a patient may have practical concerns related to the cost of care, insurance, disability, or employment. Effective survivorship care provides interventions to manage any consequences of treatment for each survivor. A transition or survivorship visit where the patient and provider/care team review the SCP and any subsequent follow-up appointments are opportunities to assess survivors’ concerns and to offer appropriate interventions.
ASCO offers guidelines for screening of and interventions for the late and long-term effects of treatment, including fatigue, anxiety and depression, and peripheral neuropathy, as well as recommendations for prostate cancer survivorship.14 Examples of practice guidelines include:
- “Screening, Assessment and Management of Fatigue in Adult Survivors of Cancer: An American Society of Clinical Oncology Clinical Practice Guideline Adaptation”
- “Screening, Assessment and Care of Anxiety and Depressive Symptoms in Adults with Cancer: An American Society of Clinical Oncology Guideline Adaptation”
- “Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers: American Society of Clinical Oncology Clinical Practice Guideline”
- “Prostate Cancer Survivorship Care Guideline: American Society of Clinical Oncology Clinical Practice Guideline Endorsement”
- “American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline”
Domain of Follow-Up Care: Coordination
The IOM recommended that oncology specialists and primary care providers coordinate with one another to ensure that all of a patient’s healthcare needs are met once primary treatment is completed. Survivors’ ongoing healthcare needs extend beyond follow-up for cancer and may include screening for other cancers, management of comorbidities, and monitoring of other risk factors. A shared care model allows each provider to focus on their expertise and maintain their relationship with the patient. The SCP can serve as a useful document shared between the oncology team, the patient, and the primary care provider as a summary of all the pertinent aspects of the cancer and cancer treatment.
Several examples of national standards include:
- The ASCO Quality Oncology Practice Initiative (QOPI)8 includes addressing many aspects of survivorship care and the delivery of a treatment summary
- The American College of Surgeons/Commission on Cancer “Cancer Program Standards: Ensuring Patient-Centered Care,” includes “Standard 3.3 Survivorship Care Plan,” including the dissemination of a treatment summary and follow-up plan to survivors who have completed treatment with curative intent14
Navigators have been instrumental in addressing these standards and incorporating SCPs into practice. These standards have been challenging to meet due to organizational buy-in, time-consuming construction of the SCP, difficulties with SCP automation within the electronic health record, billing for the development and delivery of the SCP, and tracking outcomes to demonstrate the value of the SCP.
Survivorship navigation continues to expand with the growing number of cancer survivors who are thriving with and through their disease. The comprehensive approach to addressing survivorship care requires care coordination and additional competency to address the complex issues affecting cancer survivors. Navigators serve as educators and advocates, facilitate care coordination, and play an active role in the care of cancer survivors. The demands of survivorship care will continue to grow, and navigation will play an invaluable role in meeting the needs of survivors, healthcare systems, and national accreditation standards.
Survivorship Case Study 1
Breast Cancer Survivor
Objectives of the Case Study
- The reader will be able to describe how a survivorship care plan benefits a breast cancer patient after completion of active treatment
- The reader will learn about the navigator role in survivorship programming
The period after cancer treatment ends is a challenging transition for many patients. Cancer programs can ease this transition by providing SCPs and survivorship programming to guide and educate patients.
BR is a 59-year-old woman who was diagnosed with breast cancer, clinical stage IIIB. She received preadjuvant AC-T in 2014, then had a left mastectomy with axillary node dissection and no reconstruction and completed radiation treatment in 2015. BR is single, has no children, and lives alone in a DC suburb. She has friends, neighbors, and family in her support system. BR is not currently working but was previously employed as a CPA.
At diagnosis, BR expressed concern about insurance issues and stress related to her diagnosis, and the recent death of both of her parents, for whom she was the caretaker. She had not been working for several years due to her parents’ illnesses and was hoping to return to work at least on a part-time basis. BR was overdue on many aspects of her health maintenance, and her providers made note to encourage her to get up to date on this after her breast cancer treatment.
Upon completion of treatment, BR learned about a survivorship program offered by the cancer center to patients completing active treatment. BR participated in an intake interview with the patient navigator to register for the program series. During the interview, BR articulated her concerns. Regarding medical and physical issues, BR had persistent left axillary cording and hot flashes that affected her sleep. Her radiation oncologist had advised her to start exercising and to lose weight. She also expressed the hope to have delayed reconstruction at some point. In the meantime, she wondered if there are swimsuits for women without breasts. As she put it, her body is a “daily reminder of my condition.”
The survivor also admitted that she had been doing some soul-searching on how to move forward now that treatment was completed. Her father had survived melanoma, so this provided her with some perspective on life after cancer. She also had a family history of Alzheimer’s, so she felt worried and vulnerable about that. She wondered, “How can I make the experience fade away? How can I be more aware of what I need to know to deal with anxiety?” BR also mentioned that she needs to get back to work.
The survivorship navigator recognized a gap in services for cancer survivors. With evidence-based guidelines in mind, she designed the survivorship program to support patients to manage the transition after cancer treatment and to develop an individualized health plan. The goals of the program were to educate survivors about the importance of adherence to follow-up guidelines, how a survivorship care plan can provide a road map in managing follow-up care, the importance of achieving a healthy weight through exercise and nutrition, and management of emotional issues related to the diagnosis and recovery. To enable the participants to apply the information learned in the series, health coaching was included to provide expert help in identifying health goals and creating a plan to make lifestyle changes.
During the intake interview for the program, the navigator informed BR that her concerns would be addressed during the survivorship series and/or at a survivorship transition visit. For other issues, the navigator referred the patient to individual resources.
The navigator confirmed that the patient had been going to physical therapy and in fact had excellent results in dealing with lymphedema earlier in her care. The navigator also assessed if there were any barriers to getting those services. She encouraged the patient to do any at-home exercises that the physical therapist may have prescribed.
The patient navigator discussed the benefits of acupuncture for managing hot flashes and provided information on scheduling an appointment with the cancer center’s acupuncturist. She also referred the patient to the palliative care nurse practitioner advanced practice provider (APP), who presented at the first sessions of the series on managing late and long-term effects.
Reconstruction and Swimsuits
The navigator provided the patient with recommendations for plastic surgeons and for a swimsuit supplier.
The navigator informed the patient that the survivorship series would include information and guidance on weight management during the nutrition presentation, during the exercise (yoga and Pilates) demonstration, and during the individual sessions with the health coach.
The navigator assured BR that her worries about recurrence, finding a new normal, and general anxiety are common feelings at the transition from active treatment. She let BR know that the series would include a session with the social workers addressing these emotions and making meaning of the cancer experience. The navigator also let BR know that she could meet for individual counseling with one of the social workers to discuss her concerns privately.
During the survivorship program, a nurse practitioner informed the attendees about what an SCP plan is and how to use it. The patient navigator aided BR in getting an appointment for an SCP with the nurse practitioner. During the visit, the nurse practitioner reviewed all the treatment BR received, as well as the recommendations for follow-up care and for a healthy lifestyle, including exercise, nutrition, and stress management. Referring back to the earlier health assessment, the nurse practitioner encouraged BR to see her primary care provider to get up to date on all screenings.
This case study raises some of the commonly faced issues that survivors articulate at the transition after treatment. Navigators are key to supporting patients through the cancer trajectory. Having perspective on a patient’s goals at the outset of treatment can guide conversations at the end of treatment as well. At the various points of transition in care, navigators have the opportunity to assess survivors’ individual needs and make referrals to services and programs in the cancer center or to services in the community. The SCP and survivorship programming together can address the medical, emotional, and practical needs of cancer survivors.
Survivorship Case Study 2
Clinical Trial: Chuck, Comanche Nation,
Colorectal Cancer Patient
Native American Cancer Research Corp (NACR),
Washington, DC, USA
Objectives of the Case Study
- Identify at least 4 challenges Chuck experienced that impacted his quality of life and survivorship
- Describe at least 3 members of the oncology team and the role(s) they played in helping improve Chuck’s quality of life
- Identify 4 strategies the oncology team used to address Chuck’s quality-of-life issues
Chuck is an enrolled member of the Comanche Nation. He is 55 years old, is of normal weight, has type II diabetes, and is a smoker and a recovered alcoholic (sober for 13 years). He was diagnosed with colorectal cancer. Chuck was treated for 3 months with bevacizumab (Avastin), irinotecan hydrochloride (includes FOLFIRI, folinic acid, and 5-FU), and cetuximab, but his cancer had metastasized. He was successfully enrolled in the National Cancer Institute clinical trial NCT01079780.15 This trial was to determine whether giving cetuximab and irinotecan hydrochloride together was more effective with or without ramucirumab (Cyramza).
Chuck joined a cancer support group, but the distance made attending difficult, and the members were not Native. He started meeting with a few local Comanche Nation cancer survivors at one of their homes. Their support group is informal but the 3 men help one another. They call the community patient navigator on the toll-free number in Denver when they need additional information. The community patient navigator contacts the nurse navigator when the information the 3 men need or want constitutes medical advice.
Chuck had a lot of fatigue, weakness, dizziness, nausea, vomiting, and severe headaches prior to joining the clinical trial. The headaches and dizziness were of issue because Chuck’s work as a ranch hand was conducted on horseback, and he fell a few times. Similarly, he had to stop work many times during the day in attempts to calm the nausea and to find a bush where he could vomit. Chuck attempted to remain stoic throughout these symptoms, but the men in his support group insisted he get help. They called the community patient navigator and talked with him via conference call during one of their support group gatherings, and the community patient navigator said he would talk with the nurse navigator to get her involved.
The nurse navigator created a schedule to talk with Chuck’s wife to confirm when and how he was taking his medication to keep his blood pressure in normal ranges. She did this the first 3 weeks that Chuck was enrolled in the clinical trial. He complained about the side effects during the trial and had difficulty in recovering from a wound he incurred from the horse fall (he fell on a tree stump and had a deep cut on his shin that would not heal).
The nurse navigator talked with the clinical trial nurse, and they worked on a wound management protocol. A volunteer nurse agreed to drive out to the ranch and show Chuck and his wife how to care for the wound, and she traveled once each week to check on the healing of Chuck’s wound, because he could not miss any more work at the ranch.
The clinical trial uses ramucirumab; common (10%-29% of users) side effects include high blood pressure, diarrhea, and headache. Chuck was enrolled in the trial in spite of his poorly managed high blood pressure. Of note, the dizziness and nausea side effects were lessened once Chuck was in the clinical trial. Chuck continued to have headaches, but less severe than prior to the clinical trials.
However, Chuck continued to experience a lot of weakness and fatigue. He had difficulty grooming his horse prior to starting work on the ranch each day. His comments describing the weakness were “I had to sit down 2 to 3 times while brushing my horse. Then I had to carry my saddle from the tack room to set on a tie rail. Next, I’d need to move my horse to the tie bar so that I could lift the saddle, rotate around, and heave it onto my horse’s back. Luckily, my horse stands real still because I’d have to lean against the tie rail or sit on the ground before I was able to cinch the girth. This whole process took about an hour whereas it used to take 10 min before I was in cancer treatment. This meant I had to get to the ranch a lot earlier. After the saddle was cinched up, I’d have to rest before I got the bridle from the tack room and put it on my horse. I’d rest, lead him over to a mounting block, and get on. Then I’d have to just sit in the saddle and catch my breath….”
“…The Indian guys I work with would get on me about acting like a woman…all of it in fun until I finally told them I was in cancer treatment. Then my buddy, Cal started grooming my horse and saddling him before I even got to the ranch. That was real nice.”
Solutions by the Team
Chuck called the community patient navigator early in May and asked him how long the weakness and tiredness were going to last, and if there was anything he could do to feel better. Lance explained that some fatigue could last as long as 2 years, occasionally even longer, but that it would gradually get better. In the meantime, the community patient navigator said he would contact the nurse navigator to get her medical advice and assistance for additional medications that may help. Because Chuck was in the clinical trial, the nurse navigator had to talk with the clinical trial nurse. The clinical trial nurse reached out to the dietitian for help with the fatigue, and also contacted the clinical trial lead physician for a recommendation of medication to alleviate the fatigue symptoms. The nurse navigator talked with Chuck and scheduled a follow-up appointment with her, the dietitian, and the clinical trial nurse to work on strategies to address his issues. During the appointment, the dietitian helped Chuck and his wife understand the importance of high-iron and nutrient-rich foods and supplements. Both were willing to improve his diet but could not afford these foods. The nurse navigator called to find out if the oncology social worker was available and could help with the food supplement program. The appointment lasted 4 hours, but by the end, Chuck and his wife drove home with new prescription medication to lessen the fatigue symptoms, dietary supplements free of charge, and food discount coupons to use for shopping at the local market. His wife cooked and Chuck ate the high-iron, nutritious foods.
Community Challenge and Solutions
By July, Chuck was not yet strong enough to dance in the pow wow, but his family and friends danced for him. The community patient navigator also came down to Comanche Nation and danced and prayed for Chuck. Following the pow wow, Chuck took part in 3 traditional Indian ceremonies with the help of his family and friends throughout the rest of the summer. Because the community patient navigator also was Comanche and involved with Chuck’s care, he took part in one of the traditional ceremonies.
By the following year, Chuck was strong enough to dance again (only a few slower dances and widely spaced intervals in between dances). Chuck continues to work on the ranch and gradually returned to performing part-time construction jobs around the community (he could not do this work for 18 months following the completion of his chemotherapy). He is enjoying his family, friends, and community activities, and he talks openly about his cancer experience now, but only when asked. A common concept presented by Chuck when talking with others is the Creator gives us the strength to have this journey and helps us reorganize our priorities to enable us to become more involved in our families and our communities. The cancer and the treatments are very hard, but through our traditions and guidance of the Creator, we become well again.
Chuck’s quality of life was greatly impacted by the side effects of his cancer treatment. Because of the help from the community patient navigator, nurse navigator, clinical trial nurse, the physician (to prescribe fatigue medications), the dietitian (to help Chuck and his wife with a high-iron and nutrient-rich dietary plan), the oncology social worker (for inexpensive and free food supplements), traditional Indian healer (for cleansing and spiritual ceremonies), and his local male support group, Chuck struggled through the side effects to gradually be strong enough to work on the ranch without help from his friends, take part in cultural activities (ceremonies and pow wow dancing and praying), and improve his relationships with his family and friends.
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