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"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.
Today more than 18 million Americans are . That compares with 3 million in 1971. The number will continue to increase, surpassing 22 million by the end of the decade.
Two thirds of people with a history of cancer have lived 5 years or longer after diagnosis, and almost 20% have survived 20 years or longer. About two thirds of survivors are age 65 or older. Globally, the United States accounts for of all long-term cancer survivors.
Much of the credit for this increase goes to advances in treatment, particularly management of advanced and metastatic disease. Emphasis on cancer screening has made a major contribution as well, leading to earlier diagnosis when cancer is most treatable. Screening and early diagnosis also have played a major role in an increasing incidence of cancer, which in turn adds to the growing number of people living with cancer.
Patients with melanoma have benefited greatly from the factors that have contributed to the improved overall outlook for individuals with cancer. Prior to 2010, (OS) for metastatic melanoma was less than 1 year. Today, it's encouraging that patients with metastatic melanoma treated with dual immune checkpoint inhibition on the landmark clinical trial had a median OS of 6 years.
Despite improved survival for melanoma and other cancers, patients living with cancer still have a lower life expectancy compared with people who have never had cancer. Cancer and its treatment to that by accelerating genetic and molecular processes with multiple chronic comorbidities, including endocrinopathies, cardiac dysfunction, osteoporosis, pulmonary fibrosis, secondary cancers, and frailty.
A patient who survives melanoma or other cancer begins a different phase of life and medical care. Patients living with cancer require long-term follow-up to prevent and manage treatment-related comorbidities and help them live full and productive lives.
Survivorship care has evolved into an essential component of comprehensive cancer care. Multiple organizations have developed guidelines and recommendations that provide direction for clinicians who care for patients living with cancer.
Evolution of Survivorship Care
In 2005, the Institute of Medicine (now the National Academy of Medicine) released the , "From Cancer Patient to Cancer Survivor: Lost in Transition," outlining the service and support needs of long-term cancer survivors. The report identified four essential components of survivorship care:
- Prevention
- Surveillance
- Intervention
- Coordination
Produced in collaboration with the American Society of Clinical Oncology (ASCO) and the National Coalition of Cancer Survivorship (NCCS), the report included models of healthcare delivery for survivors of adult cancers.
ASCO introduced a survivor care template in 2008, on the basis of recommendations from an expert consensus panel. NCCS has developed a to encourage patients and caregivers to take a more active role in cancer care. Multiple other organizations have recommendations and resources to further development of multidisciplinary approaches to cancer survivorship. The information and resources encompass diverse topics that include follow-up, long-term treatment, and managing side effects of treatment, as well as psychological and social support, caregiver support, legal matters, and financial issues.
Essentials of Survivorship
An convened by ASCO described two equally important components of a cancer survivorship care plan (SCP): a treatment summary and a follow-up care plan.
The treatment summary incorporates information from a patient's treatment plan to document the cancer care a patient actually received. In turn, the treatment summary should inform the follow-up care plan, which would be guided by the diagnosis, treatment, specifics of the therapy, and potential long-term complications and side effects.
Several key assumptions informed and guided the discussions about information to include in an SCP. It does not replace discussions between the patient, family, caregivers, and cancer care team members, but rather supplements those discussions.
The SCP is not intended to replace a patient's medical record. The SCP should be as simple, clear, and understandable as possible. The SCP is intended for patients treated with curative intent, who have completed active treatment, and have no evidence of disease. The plan should be viewed as an evolving document that may be updated or reissued as needed.
Treatment Summary
The panel agreed that a summary should have three major components:
- Contact information for providers and centers where care was received
- Basic diagnostic and staging information
- Information about surgery, radiation therapy, systemic therapies, and ongoing significant toxicities, including dates
The extent of details and specifics about a patient's care should be included as considered relevant, such as tumor grade and non-anatomic staging (such as hormone receptor status for breast cancer and KRAS mutation status for colon cancer). For selected cancers, genetic or hereditary risk factors and results of genetic testing would be relevant.
Follow-up Care Plan
The follow-up care plan serves as an aid to a patient's ongoing care. The expert panel identified four key components of the plan:
- A surveillance plan to detect recurrence and late adverse events
- Interventions to managing ongoing complications or side effects of cancer or treatment
- Age- and sex-appropriate healthcare, including cancer screening
- General health promotion
The plan should include a schedule of follow-up visits, noncancer-related exams and laboratory testing, possible symptoms of cancer recurrence, a list of clinically significant late or long-term adverse effects (common or rare), a list of supportive care needs (such as mental health, parenting, work status, financial issues, and insurance), and a general statement emphasizing the importance of healthy behaviors (diet, exercise, smoking cessation, alcohol use, etc.).
Detailed Information About Survivorship Care
The National Comprehensive Cancer Network (NCCN) clinical practices guidelines include a comprehensive section on survivorship. The guideline is organized into broad topics: general survivorship principles, preventive health, and late effects/long-term psychosocial and physical problems.
The section on survivorship principles reviews definitions and standards for survivorship care, survivorship guidelines, cancer screening, essentials of a survivorship assessment, and an extensive list of survivorship resources for healthcare professionals and patients.
Preventive health focuses on principles of healthy living, including diet, physical activity, and immunizations.
The section on late and long-term effects covers cardiovascular disease risk assessment, psychological distress, cognitive function, fatigue, lymphedema, pain, hormone-related symptoms, sexual function, sleep disorders, and employment and return to work. NCCN notes that it periodically reviews and revises the survivorship information and recommendations, relying on input from 11 dedicated survivorship subcommittees, each of which focuses on a key chapter in the survivorship guideline.
The complete survivorship guideline is . The organization also has resources for patients.
Read previous installments in this Medical Journeys series:
Part 1: Melanoma: Epidemiology, Diagnosis, and Treatment
Part 2: Recognizing Melanoma: What It Is, What It Isn't
Part 3: Basics of Melanoma Diagnosis
Part 4: Case Study: The Dangers of Melanoma Recurrence
Part 5: Managing Early-Stage Melanoma
Part 6: Managing Unresectable/Metastatic Melanoma: What to Know
Part 7: Case Study: Did This Melanoma Metastasize or Is It Something Else?
Part 8: Sorting Through Therapeutic Options for Advanced Melanoma
Part 9: Recurrent Melanoma: Navigating the Clinical Pathways
Part 10: Melanoma: Follow-Up Fine Points