Addressing Cancer Survivorship Through Public Health: An Update from the Centers for Disease Control and Prevention

Abstract

Currently, there are nearly 12 million cancer survivors living in the United States. They face a myriad of personal and health issues related to their cancer treatment. Increased recognition of cancer survivorship as a distinct and important phase that follows the diagnosis and treatment of cancer has contributed to the development of public health-related strategies and plans to address those strategies. CDC's Division of Cancer Prevention and Control (DCPC) uses an interdisciplinary public health approach to address the needs of cancer survivors through applied research, public health surveillance and data collection, education, and health promotion, especially among underserved populations that may be at risk for health disparities. Our surveillance activities contribute to population-based descriptions of the health and treatment experiences of cancer survivors in the United States. These data inform applied research activities as well as provide baseline data on cancer survivors for local comprehensive cancer control programs. The knowledge gained by our research efforts informs the development of interventions, awareness and education campaigns, and other outreach activities targeting cancer survivors and those who care for and support them. Our partnerships with national organizations, state health agencies, and other key groups are essential in the development, implementation, and promotion of effective cancer control practices related to cancer survivorship. This article provides an overview of the cancer survivorship activities currently being implemented by DCPC. We highlight several public health surveillance, research, and programmatic outreach and partnership activities currently underway.

Introduction

Acancer survivor is any person who has received a diagnosis of cancer from the time of diagnosis through end of life. Family members, friends, and caregivers may also be included in this definition.¹ In 1971, there were approximately 3 million cancer survivors living in the United States.² Currently, there are nearly 12 million cancer survivors in the United States.² This dramatic increase in the number of survivors is primarily a result of the aging U.S. population and increased survival from cancer owing to earlier detection and improved treatments of many cancers.³ The number of people ≥65 years diagnosed with cancer is expected to double by 2050.⁴ Five-year survival rates increased from 50% in the mid-1970s to 66% in 2008.⁵

Cancer survivors face a myriad of personal and health issues related to their cancer treatment. Concerns related to cancer recurrence, treatment-related late effects, quality of life after treatment, and appropriate follow-up care and primary/secondary prevention necessitate the availability of support services for survivors and their loved ones as well as education and training for healthcare providers. Increased recognition of cancer survivorship as a distinct and important phase that follows the diagnosis and treatment of cancer has contributed to the development of public health-related strategies and plans to address those strategies.⁶ In 2004, the Centers for Disease Control and Prevention (CDC) and the Lance Armstrong Foundation (LAF) cosponsored development of A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.¹ The National Action Plan represents the combined effort of almost 100 experts in cancer survivorship and public health to identify, prioritize, and propose strategies for addressing cancer survivorship within the context of four traditional public health domains: surveillance and applied research; communication, education, and training; programs, policies, and infrastructure; access to high-quality care and services.

CDC's Division of Cancer Prevention and Control (DCPC) is a leader in the efforts to address the public health aspects of cancer survivorship. Many of the activities currently being implemented by DCPC are related to the strategies identified in the National Action Plan for Cancer Survivorship. DCPC uses an interdisciplinary public health approach to addressing the needs of cancer survivors through applied research, surveillance, and data collection to inform programmatic outreach, education, and health promotion, especially among underserved populations that may be at risk for health disparities. Over time, we intend for these efforts to affect the health and well-being of cancer survivors as well as to inform the development and implementation of public and health policy. This article provides an overview of the cancer survivorship activities currently being implemented by DCPC. We highlight several public health surveillance, research, and programmatic outreach and partnership activities currently underway.

Public Health Surveillance

The CDC is a recognized leader in monitoring the health of populations. We facilitate the implementation of several large public health surveillance systems for cancer survivorship: the Behavioral Risk Factor Surveillance System (BRFSS), the National Program of Cancer Registries (NPCR), and the National Health Interview Survey (NHIS) (Table 1). Information gleaned from these types of surveillance systems is used to assess public health status, to define public health priorities, to evaluate programs, and to conduct research.⁷ DCPC uses data from several CDC-funded surveillance systems to address needs of cancer survivors.

Table 1.

Summary of Ongoing Public Health Surveillance Activities Related to Cancer Survivorship within the Division of Cancer Prevention and Control, CDC

Project	Data source	Target population	Collaborating partner	Anticipated completion
Addition of survivorship-related questions to BRFSS	Behavioral Risk Factor Surveillance System (BRFSS)	All cancer survivors	National Comprehensive Cancer Control Program (NCCCP)	2010, 2011
Addition of survivorship-related questions to NHIS	National Health Interview Survey (NHIS)	All cancer survivors	National Cancer Institute (NCI)	2011
National cancer surveillance: Incidence and mortality	National Program of Cancer Registries (NPCR)	New cancer cases and Deaths	State/central cancer registries	Ongoing
	National Vital Statistics Surveillance System (NVSS)

National Program of Cancer Registries (NPCR)

CDC's NPCR provides funding for 45 states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions to actively collect information on new cancer cases in order to monitor the burden of disease and focus cancer prevention and control activities. NPCR-funded registries cover 96% of the U.S. population.⁸ CDC partners with the National Cancer Institute (NCI) and the North American Association of Certified Cancer Registries (NAACCR) to publish the United States Cancer Statistics (USCS), an annual report that contains official cancer statistics (e.g., incidence and mortality) for the U.S. population and for individual states.⁸ These data allow for a global description of cancer in the United States and help to identify variations in the number of new cases and deaths among various racial and ethnic, sex-specific, and geographic populations. However, cancer registry data typically provide us with little insight into the lives and posttreatment experience of cancer survivors in the United States.

Behavioral Risk Factor Surveillance System (BRFSS)

In order to better address the needs of cancer survivors, we must have an understanding of the types and magnitude of issues faced by them as a result of cancer diagnosis and treatment. Until recently, there were no population-based surveillance systems collecting state-level data on cancer survivorship. State-based programs often lacked the tools necessary to evaluate the effectiveness of community-based services and implementation of comprehensive cancer control plans and strategies in improving the care and quality of life of cancer survivors.⁹ In response, CDC worked with its state and national partners to develop or enhance the data sources to better assess and describe the condition of cancer survivors.

At the state level, CDC led the development and implementation of a set of cancer survivorship questions for the BRFSS survey. The BRFSS is an ongoing random digit-dial telephone interview health survey of noninstitutionalized individuals conducted by health departments in 50 states, the District of Columbia, and selected U.S. territories and Associated Pacific Island Jurisdictions (Guam) and in Puerto Rico and the U.S. Virgin Islands to monitor the health status of their populations.¹⁰ All respondents of the 2009 BRFSS survey will be asked if they have a cancer history and, if so, the cancer type and the respondent's age at diagnosis. States administering the survey also will have the option to ask additional, standardized questions about treatment and follow-up care, provider type at time of diagnosis vs. current provider type, pain management, and insurance access.⁴ As a result of this project, states will begin collecting baseline data on a number of measures related to the cancer survivor's experience.

National Health Interview Survey (NHIS)

At the national level, CDC has partnered with NCI to enhance the current collection of cancer survivorship data via the NHIS. The NHIS currently includes cancer survivor-specific questions: Have you ever been told by a doctor or nurse that you have cancer? At what age were you diagnosed? What type of cancer was it? With this information, studies have been conducted that focused on the burden of illness, insurance coverage of cancer survivors, and provider counseling about health behaviors.^11,12 CDC and NCI are currently working together to develop additional questions for the 2010 NHIS to focus more specifically on issues potentially faced by cancer survivors, such as quality of life, fear of recurrence, phase of cancer survivorship, treatment and follow-up, psychosocial care, and the economic impact of cancer. These data will be useful in providing a national perspective of the experience of cancer survivors in the United States. The combined use of data from these three surveillance systems will allow for an unprecedented, comprehensive reflection of health, life, behaviors, and healthcare after cancer in relation to a noncancer comparison population at the state and national levels.

Research

The DCPC is conducting health services research studies focused on many aspects of monitoring cancer care, with particular attention directed toward understanding racial/ethnic and socioeconomic disparities (Table 2). Through CDC-supported Prevention Research Centers, the receipt of appropriate cancer treatment is being studied at three different research universities: Emory University, the University of Alabama, and the University of Washington. Results from Washington State have shown that women with breast cancer insured by Medicaid either failed to begin radiation therapy following breast-conserving therapy, did not complete a full course, or experienced significant delays during treatment.¹³ Another study at the University of North Carolina at Chapel Hill is examining reasons why women insured by Medicaid who undergo breast-conserving surgery do not receive radiation therapy after surgery for early-stage breast cancer. Understanding the reasons why women are not receiving guideline-based treatment will allow for interventions to be designed and implemented to address this disparity in care and to improve outcomes for these women.

Table 2.

Summary of Ongoing Public Health Research Activities Related to Cancer Survivorship within the Division of Cancer Prevention and Control, CDC

Project	Description	Target population	Funded institution	Anticipated completion
Survivor Education and Evaluation (SURE)	Prospective, randomized study to assess impact of the I Can Cope survivorship education program^*	Low-income African American	Prevention Research Center: University of Alabama Birmingham	Ongoing
Determinants of dropout from cancer treatment	Retrospective analysis to evaluate treatment completion rates	Low-income/rural cancer survivors	Emory University, University of Alabama, and University of Washington	Completed
Determinants of not receiving radiation therapy after breast-conserving surgery	Qualitative study to examine reasons why low-income women do not receive radiation therapy after breast-conserving surgery for breast cancer.	Low-income women breast cancer survivors	University of North Carolina at Chapel Hill	Ongoing
A study of primary and secondary prevention behavior practiced among 5-year survivors of colorectal cancer	Population-based survey to assess predictors of primary and secondary prevention behavior among 5-year survivors of colorectal cancer	Colorectal cancer survivors	California Cancer Registry	Ongoing
Healthcare Providers for older adult, long-term cancer survivors	Retrospective cohort study using Surveillance Epidemiology and End Results (SEER)-Medicare data to describe type of providers caring for Medicare enrollees diagnosed with breast, colorectal, or prostate cancer >5 years after diagnosis	Long-term cancer survivors	Research Triangle Institute, Research Triangle Park, NC	Completed
Survivorship issues for young women with breast cancer	Comprehensive literature review to assess information needs of young women breast cancer survivors.	Young women breast cancer survivors (<40 years of age)	Scimetrika, LLC Raleigh, NC	Ongoing
Breast, colon, and prostate cancer data quality and treatment patterns of care studies	National Program of Central Cancer Registries (NPCR)-funded and collaboration with state population-based cancer registries to assess quality of cancer care and examine variations in use of appropriate standards of care in the United States	Survivors with breast, colorectal, prostate, ovarian, or oral/pharyngeal cancers	NPCR- funded registries in California, Colorado, Georgia, Illinois, Kentucky, Louisiana, Minnesota, New York, North Carolina, South Carolina, Wisconsin	Ongoing

I Can Cope is an established cancer educational program developed by the American Cancer Society.

DCPC researchers also are active in characterizing patterns of care and of health-related behaviors of cancer patients who have survived for >5 years. One recent study characterized the specialty of physicians who provided care for long-term survivors of breast, colorectal, and prostate cancer.¹⁴ Researchers found that after surviving 5 years, more survivors receive care from primary care providers than from oncology specialists and that visits to cancer specialists decreased each successive year after diagnosis. The results of this study provide a rationale to develop education and guidance for primary care providers regarding cancer survivorship care. A new study will assess predictors of primary and secondary prevention among 5-year colorectal cancer (CRC) survivors in California in a population-based survey. These findings will be used to develop health-promotion interventions for cancer survivors.

Many efforts are underway to empower survivors with knowledge about advocacy, support services, and other resources to live well. DCPC seeks to understand topics of concern to survivors, especially among particular groups whose issues may not be clearly recognized. To that end, we are currently conducting comprehensive literature reviews to assess the information needs of young women who are breast cancer survivors. DCPC is also raising awareness of fertility concerns of survivors through participating in a CDC-wide work group focusing on the prevention, detection, and management of infertility.¹⁵ Another Prevention Research Center study being conducted by the University of Alabama at Birmingham is a randomized controlled trial to evaluate how well an existing survivorship educational program¹⁶ meets the information needs of lower-income, predominantly African American cancer survivors. DCPC is playing an important role in evaluating the needs of cancer survivors and the efficacy of programs designed to meet their needs. CDC leads and supports local and national efforts focused on improving the life of cancer survivors.

Programmatic Outreach Activities

Central to CDC's efforts to address the needs of cancer survivors is our ability to develop partnerships with national, state, and nongovernmental organizations that support cancer survivors. More specifically, these partnerships allow us to facilitate the development and implementation of educational materials and services aimed at the target population. CDC currently uses three mechanisms to accomplish these purposes: (1) the National Comprehensive Cancer Control Program (NCCCP) Cooperative Agreement,¹⁷ (2) the National Health Organization Strategies to Provide Information and Education for Cancer Survivors with respect to Hematologic Cancers Cooperative Agreement (Table 3), and (3) the National Organization Activities for Cancer Control in Underserved Populations Cooperative Agreement (Table 4).

Table 3.

Summary of Current Cancer Survivorship-Related Programmatic Activities Funded through CDC's National Health Organization Strategies to Provide Information and Education for Cancer Survivors with Respect to Hematologic Cancers Cooperative Agreement

Programmatic partner	Description of initiative/target audience	Website information
Leukemia & Lymphoma Society (LLS)	Providing outreach and education to older adults regarding leukemia, lymphoma, and myeloma	www.lls.org
Lymphoma Research Foundation (LRF)	Creating lymphoma-related educational materials appropriate to the culture, language, and reading level of medically underserved minority/immigrant populations, and lower-literacy, English-speaking patients	www.lymphoma.org
Multiple Myeloma Research Foundation (MMRF)	Expanding its existing education and outreach programs designed to reach underserved populations; efforts target the public and healthcare providers	www.multiplemyeloma.org
National Marrow Donor Program (NNDP)	Creating age-specific communication materials about blood and marrow transplants and working to increase patients' access to information about the blood and marrow transplant process	www.marrow.org
Patient Advocate Foundation (PAF)	Providing targeted outreach to populations affected by leukemia, lymphoma, and myeloma	www.patientadvocate.org
SuperSibs!	Outreach to and education of siblings of children going through treatment	www.supersibs.org/
National Coalition for Cancer Survivorship (NCCS)	Enhancing a recently created cancer survivors' toolkit for specific groups of hematologic cancer survivors	www.canceradvocacy.org/
Oregon Health and Science University	Creating educational material, web-based medical records systems, and other tools for young adult cancer survivors	www.ohsucancer.com/
Education Network to Advance Cancer Clinical Trials, Inc (ENNACT)	Creating clinical trials educational materials for cancer survivors and medical care providers	www.enacct.org/

Table 4.

Summary of Current Cancer Survivorship-Related Programmatic Activities Funded through CDC's National Organization Strategies for Prevention, Early Detection, or Survivorship of Cancer in Underserved Populations Cooperative Agreement

Programmatic partner	Description of initiative/target audience	Website
Asian and Pacific Islander Health Forum (APIHF)	Survivorship outreach and educational material for the Asian and Pacific Island Population	www.apiahf.org/
Patient Advocate Foundation (PAF)	Increasing survivorship while enhancing quality of life by providing outreach and direct case management services for patients in underserved populations with breast, cervical, colorectal, prostate, skin, and ovarian cancers	www.patientadvocate.org/
American Cancer Society's Circle of Life program (ACS)	Providing outreach and cancer education to American Indians/Alaska Natives (AI/AN) across the United States	www.cancer.org/
American Psychological Association (APA)	Building the capacity of community cancer serving organizations and stakeholders to access, adopt, adapt, and utilize evidence-based and practice-based strategies that address SES-related cancer disparities in socioeconomically disadvantaged communities and populations	www.apa.org/pi/ses
Asian & Pacific Islander National Cancer Survivors Network (APINCSN)	Developing, enhancing, and coordinating culturally and linguistically competent and community-relevant cancer prevention and control activities for Asian Americans, Native Hawaiians, and Pacific Islanders in the United States and Pacific	www.apiahf.org/
Boat People SOS, Inc.'s Health Awareness and Prevention Program (HAPP)	Addressing emerging health issues related to cancer prevention, early detection, and survival through the use of education and information, referral and navigation, and improved community capacity	www.bpsos.org/
The Lance Armstrong Foundation (LAF)	Providing education and outreach services designed to promote greater awareness of cancer and increase the utilization of services among Hispanic/Latino cancer survivors and their families, and adolescent/young adult cancer survivors and their families	www.livestrong.org/
My Brother's Keeper, Inc.'s Cancer Education and Cultural Awareness Project	Enhancing the health and well-being of African Americans through leadership in public and community health practices, collaboration, and partnership	www.mybrotherskeeperinc.net

National Comprehensive Cancer Control Program (NCCCP)

In 1998, CDC funded the NCCCP to provide seed money and technical support for the development and implementation of Comprehensive Cancer Control (CCC) plans in all 50 states, the District of Columbia, seven tribes and tribal organizations, and seven U.S. territories.¹⁸ CCC is an integrated and coordinated approach to reducing cancer incidence, morbidity, and mortality through prevention, early detection, treatment, rehabilitation, and palliation.¹⁸ These efforts encourage healthy lifestyles, promote recommended cancer screening guidelines and tests, increase access to high-quality cancer care, and improve the quality of life for cancer survivors. Fifty-nine of the 65 funded CCC program plans include goals and objectives related to survivorship. Activities associated with these goals and objectives range in breadth and scope, but they include specific programs related to education of cancer survivors and healthcare providers, enhanced data collection of cancer survivorship information, direct support for survivors and their families, and other community outreach activities.

National Health Organization Strategies to Provide Information and Education for Cancer Survivors with respect to Hematologic Cancer

CDC funds efforts to raise awareness about hematologic cancers (leukemia, lymphoma, and myeloma), including symptoms and treatments, to improve survivors' quality of life. These efforts offer healthcare providers the latest information about how to recognize the signs and symptoms of hematologic cancers and how to treat these diseases. They also connect the public, people living with hematologic cancers, and their friends and families with resources for understanding the diseases better; asking the right questions about diagnosis, treatment, and survivorship; receiving optimal treatment; and finding community support networks.¹⁹ This work was initially funded through the National Health Organization Strategies to Provide Information and Education for Cancer Survivors with respect to Hematologic Cancer Cooperative Agreement. The initial cooperative agreement provided funding for four organizations: Community Media Productions, International Myeloma Foundation, Research Triangle Institute, and Vox Medica. Our partnership with Community Media Productions led to the development of the Emmy Award-winning Public Broadcasting System television documentary, “A Lion in the House.” This documentary chronicled the lives of five children undergoing treatment for childhood cancer. Community Media Productions expanded the breadth of this project by developing eight modules around childhood cancer, including: Facing End-of-Life—Case Studies, The Sibling Experience, The Role of Spirituality in facing Childhood Cancer, Nurse Boundary Issues, The Special Challenges of Adolescents Facing Cancer, Focus on Survivorship, Disparities Based upon Class and Culture, and Issues for School Personnel. These modules are to be used by educational and professional communities to build their capacity to help among pediatric cancer survivors. It should be noted also that one of the modules was adapted through collaboration with Community Media Productions and with a newly funded program, SuperSibs! This collaboration is one of many that have stemmed from the interactions between CDC and its funded national partner organizations.

Under the current cooperative agreement, CDC funds nine organizations to provide information and educational materials for survivors of hematologic cancers (Table 3). Several of the funded partners are developing tools and educational resources to address disparities in underserved/minority populations (e.g., Leukemia & Lymphoma Society, Lymphoma Research Foundation, Multiple Myeloma Research Foundation, National Marrow Donor Program, Education Network to Advance Cancer Clinical Trials, Inc., Patient Advocate Foundation, and the National Coalition for Cancer Survivorship). The Oregon Health and Science University Cancer Institute and SuperSibs! provide educational materials and information for adolescent and young adult and childhood cancer survivors, respectively (Table 3).

National Organization for Cancer Control in Underserved Populations

Through the National Organization for Cancer Control in Underserved Populations Cooperative Agreement, CDC funds nine program partners to develop and implement population-specific activities aimed at addressing a variety of issues related to care and support for cancer survivors (Table 4). These funded national partner organizations for cancer control provide health education materials and health promotion opportunities that are culturally relevant and linguistically appropriate. They use various communication modes (e.g., mass communications via radio and local television broadcasts, social networking, and print media) to disseminate and coordinate survivorship activities for these underserved populations (Table 4). Underserved populations that are receiving outreach from these national organizations are American Indian and Alaskan Natives (American Cancer Society), Asian Pacific Islanders (The Asian & Pacific Islander American Health Forum, Boat People SOS, Inc.), African Americans (My Brother's Keeper), Latino/Hispanic (Lance Armstrong Foundation, National Alliance for Hispanic Health, Self Reliance Foundation), and those with low socioeconomic status (The American Psychological Association, Patient Advocate Foundation). Through these varied initiatives, cancer prevention and control activities are reaching people who are traditionally underrepresented across the country.

Conclusions

This summary of current CDC activities illustrates the breadth of work being conducted as part of the public health response to the challenges and issues related to cancer survivorship. Our public health surveillance activities contribute to population-based descriptions of the health and treatment experiences of cancer survivors in the United States. These data inform applied research activities and provide baseline data on cancer survivors for CCC programs. Knowledge gained by research efforts adds to the body of literature on this topic and informs the development of interventions, awareness and education campaigns, and other outreach activities targeting cancer survivors and those who care for and support them. National organizations, state health agencies, and other key groups are essential partners in developing, implementing, and promoting effective cancer control practices related to cancer survivorship. In the future, we will continue to enhance our public health surveillance, research, and programmatic outreach activities in order to provide leadership and direction in research, resources, and programs aimed at identifying and addressing the spectrum of needs faced by cancer survivors, their family members, caregivers, and professional healthcare providers.

Footnotes

Acknowledgments

We thank the members of the DCPC Cancer Survivorship Inter-branch Group: Donatus Ekwueme, Ph.D., Nikki Hawkins, Ph.D., Genise V. Nixon, Sun H. Rim, M.P.H., Juan Rodriguez, M.P.H., Susan Sabatino, M.D., George-Ann Townsend, Katrina F. Trivers, Ph.D., and Hannah Weir, Ph.D., for their contributions to CDC's efforts in cancer survivorship.

Author Note

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Disclosure Statement

The authors have no conflicts of interest to report.

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