Case study 141.1
1. You are seeing a newly diagnosed 45-year-old male with stage III colorectal cancer. He comes along with his sister, who is very much involved in his care. Both of them have a positive outlook on the treatment recommended by your team. His sister says, “My brother is a cancer survivor. Am I correct, Doc?” How do you respond?
- No, not now, but he will be a cancer survivor once he is disease free for minimum of 5 years
- Yes, you are absolutely correct
- No, he will be a cancer survivor only if the scans and colonoscopy are negative following therapy
- I am pretty sure your brother will be a cancer survivor since he doesn’t have stage IV disease
The term “cancer survivor’’ was coined by a physician and a cancer survivor, Dr. Fitzhugh Mullan, in 1985; the definition encapsulates any person who has been diagnosed with cancer from the time of their diagnosis and until the reminder of life. There are at least three distinct phases associated with cancer survival: acute survival, the period after diagnosis, when energies are focused on surviving treatment itself; the period after completion of treatment, when the survivor’s energies are focused on dealing with the physical and psychological consequences of treatment; and permanent survival, the period when recurrence seems increasingly unlikely, although the survivor is in a continuous struggle in dealing with the long-term effects of treatment. The patient described here is in the “acute survival” phase and is a “cancer survivor.”
2. True or false? Cancer survivors represent a growing population who are homogeneous in their need for medical care, psychosocial support, and practical assistance, with well-established agendas for their research, and coordinated practices are observed between the physicians taking care of them.
- True
- False
Definitively, cancer survivors represent a growing population, but they represent a heterogeneous group with regard to their need for medical care, psychosocial support, and practical assistance. The number of cancer survivors will continue to increase due to the aging and growth of the population, improvements in survival rates, and effective cancer screening. To highlight the challenges and opportunities to serve these survivors, de Moor and colleagues obtained the incidence and survival data from 1975 to 2007 from the Surveillance, Epidemiology, and End Results (SEER) program and population projections from the US Census Bureau. Additionally, their report projected cancer prevalence for 2012 and beyond using the Prevalence Incidence Approach Model, assuming constant future incidence and survival trends but dynamic projections of the US population. They concluded that an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and by January 1, 2022, that number will increase to nearly 18 million. Sixty-four percent of this population has survived 5 years or more, 40% have survived 10 years or more, and 15% have survived 20 years or more after diagnosis. Over the next decade, the number of people who have lived 5 years or more after cancer diagnosis is projected to increase approximately 37% to 11.9 million. A coordinated agenda for research and practice is needed to address cancer survivors’ long-term medical, psychosocial, and practical needs across the survivorship trajectory.
3. The “cancer survivor” described in Question 1 is now in the “permanent survival” phase following successful therapy. Which of the following statements about the care of patients in this particular phase of survivorship are correct?
- This phase of the cancer journey has long been ignored by medical teams
- The majority of patients suffer long-term effects in the physical, emotional, and practical domains, which are often unattended by medical teams
- The US Institute of Medicine’s (IOM) committee attempted but failed to provide the goals for increasing patients’ and providers’ awareness
- Basic communications between the medical oncologist and the primary care provider (PCP) may have substantial value for the patient and their families, especially during shared and transferring care
The IOM’s 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition” came about because of a recognition that the recovery or permanent-survival phase of the cancer journey had long been ignored. The IOM committee has made a number of recommendations that have largely achieved the goal of increasing patients’ and providers’ awareness of the many issues that can affect cancer survivors. However, with the exception of a few centers of excellence, most providers have found it difficult to substantively change the way they care for cancer survivors. Salz and colleagues (2012) reported that although the idea of survivorship care plans is looked on favorably among National Cancer Institute (NCI)–designated comprehensive cancer centers, there are concerns about its feasibility. As a result, only 43% of them deliver care plans to their breast or colorectal cancer survivors, and none provide all of the components recommended by the IOM. Finally, it is absolutely correct that basic communication between the medical oncologist and the PCP can go a long way toward easing patient and family concerns.
4. Why it is difficult to operationalize an ideal survivorship care program? (Check all that apply.)
- Survivorship care is an unfunded mandate for oncologists
- The evidence base for survivorship care remains weak with few exceptions
- Manpower shortages in clinics
- Time limitations in already busy clinics
- Lack of awareness about cancer survivorship experience (post-treatment)
The perfect models for delivery of survivorship care to the millions of survivors of cancer worldwide are still works in progress, and they will probably require additional evolution and refinement, as well as an information technology infrastructure to make them feel seamless. Raising awareness about the posttreatment cancer survivorship experience has surely been achieved, with national and private organizations throughout the world acknowledging the expanding number of survivors whose needs must be addressed (Table 141.1). According to Earle and Ganz (2012), it is generally recognized that physicians incorporate something new into their practice only if at least one of three conditions is met: (i) it has clearly been shown to be better for their patients, (ii) physicians are specifically remunerated for it, or (iii) it is more efficient for physicians in their practice. Survivorship care as envisioned by the IOM report does not readily meet any of these criteria at the present time due to many (choices A through D) of the reasons.
Table 141.1 National Cancer Survivorship Resource Center (Source: Adapted from Siegel R et al. CA Cancer J Clin. 2012;62(4):220–41. Reproduced with permission of John Wiley & Sons).
The National Cancer Survivorship Resource Center (The Survivorship Center) is a collaboration between the American Cancer Society and the George Washington Cancer Institute, funded by the Centers for Disease Control and Prevention. Its goal is to shape the future of posttreatment cancer survivorship care and to improve the quality of life of cancer survivors. The Survivorship Center staff and more than 100 volunteer survivorship experts nationwide developed the tools listed here for cancer survivors, caregivers, healthcare professionals (HCPs), and policy and advocacy efforts. |
Tools for cancer survivors and caregivers |
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Life after Cancer Treatment Guide. A quick, easy-to-read information guide to help cancer survivors and their caregivers understand the various aspects of the survivorship journey. The guide also includes trusted resources for survivorship information and encourages communication with HCPs. The guide is available online at http://www.cancer.org/survivorshipguide.
Survivorship Information Resource Inventory. An inventory of information resources to assist posttreatment survivors. It is available online at http://www.cancer.org/survivorshipresourceinventory. |
Tools for HCPs |
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Prescription for Cancer Information. A tool to help HCPs talk to survivors about resources available in their office or clinic, in the community, online, and over the telephone. This tool is available online at http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-033258.pdf.
Moving beyond Patient Satisfaction: Tips to Measure Program Impact Guide. A brief guide detailing indicators and outcome measures that can be used to monitor the success of survivorship programs; available online at http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-033811.pdf. |
Tools for advocates and policy makers |
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The Survivorship Center recognizes the importance of policies that support quality survivorship care. To educate policy makers on these issues, a white paper was created describing the priority areas for improving survivorship care. This paper is available online at http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-031411.pdf.
To find out more about the Survivorship Center’s activities, visit http://www.cancer.org/survivorshipcenter. |
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17: Management of Therapy-Related Myeloid Neoplasms
36: Nodular Lymphocyte-Predominant Hodgkin Lymphoma
71: Secondary Brain and Spinal Cord Tumors
