Transition to Survivorship

Abstract

Cancer leads patients on a trajectory, including diagnosis, treatment, survivorship, and care through the balance of ones’ life. Each phase makes distinct demands on the patient, caregivers, healthcare providers, and complicated healthcare delivery systems. This chapter addresses survivorship care and the need for ongoing health maintenance from the perspective of the patient and their healthcare providers, including the vital role of navigation. The chapter will provide a broad description of the crosscutting issues surrounding cancer survivorship and will close with an example of survivorship care in practice.

Appendices

Survivorship Case Study 1

9.1.1 Breast Cancer Survivor

• Pamela Goetz BA, OPN-CG 

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.

9.1.1.1 Intro

The period after cancer treatment ends is a challenging transition for many patients. Cancer programs can ease this transition by providing survivorship care plans and survivorship programming to guide and educate patients.

9.1.1.2 Background Situation

BR is a 59-year-old woman who was diagnosed with breast cancer, clinical stage IIIB. She received pre-adjuvant 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.

9.1.1.3 Challenges

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.

9.1.1.4 Solutions

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.

9.1.1.5 Cording

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.

9.1.1.6 Hot Flashes

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.

9.1.1.7 Reconstruction and Swimsuits

The navigator provided the patient with recommendations for plastic surgeons and for a swimsuit supplier.

9.1.1.8 Weight Management

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.

9.1.1.9 Emotional Challenges

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.

9.1.1.10 Survivorship Care Plan

During the survivorship program, a nurse practitioner informed the attendees about what a survivorship care plan is and how to use it. The patient navigator aided BR in getting an appointment for a survivorship care plan 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.

9.1.1.11 Implications

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 survivorship care plan and survivorship programming together can address the medical, emotional, and practical needs of cancer survivors.

Survivorship Case Study 2

9.1.1 Clinical Trial: Chuck, Comanche Nation, Colorectal Cancer Patient

• Linda Burhansstipanov DrPH, MSPH 

1. Native American Cancer Research Corp (NACR), Washington, DC, USA

   Linda Burhansstipanov DrPH, MSPH

Objectives of the Case Study

• Identify at least four challenges Chuck experienced that impacted his quality of life and survivorship.

• Describe at least three members of the oncology team and the role(s) they played in helping improve Chuck’s quality of life.

• Identify four strategies the oncology team used to address Chuck’s quality-of-life issues.

9.1.1.1 Introduction

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).

9.1.1.2 Background Situation

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 three 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 three 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.

9.1.1.3 Clinical Challenge

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).

9.1.1.4 Clinical Solution

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.

9.1.1.5 Clinical Challenge

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.

9.1.1.6 Patient Challenge

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 two to three 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….”

9.1.1.7 Community Solution

“…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.”

9.1.1.8 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 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.

9.1.1.9 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 three 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.

9.1.1.10 Implications

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.