Wisconsin Cancer Plan 2020-2030

Everyone in Wisconsin deserves the chance to live life to the fullest.

This means having the resources needed to make healthy choices and receiving the highest quality care. Unfortunately, too many Wisconsinites are denied this opportunity because of historical and contemporary injustices, geographic location, and critical gaps in culturally responsive health care services.

In Wisconsin today, some populations are more likely to develop cancer and die from cancer. These inequities may be based on one’s race or ethnicity, socioeconomic status, gender, age, religion, mental health, ability status, body size, sexual orientation, gender identity, geographic location, or other characteristics linked to racism, discrimination, and exclusion.

Social and economic factors, as well as our physical environment, contribute to health and health inequities. Where people are born, live, work, worship, learn, play, and age—otherwise known as the social determinants of health—can make it more or less challenging to access quality health care and engage in healthier behaviors, which largely determine the quality and length of one’s life.

We can ensure health equity for all when we:

• Increase our state’s capacity to reduce the burden of cancer for everyone.
• Increase the number of Wisconsinites who have access to quality health care that is both culturally and linguistically appropriate.
• Prioritize activities that engage, center, and benefit populations at higher risk of health-related inequities.
• Commit organizational energy to addressing social determinants of health.

The Takeaway

We will improve health outcomes for everyone in Wisconsin when we improve the conditions in which people are born, live, work, worship, learn, play, and age. By incorporating health equity into cancer control efforts, we can reduce the unequal burden of cancer in Wisconsin.

Key Terms

Health equity: A condition achieved when every person has the opportunity to “attain their full health potential” and no one is “disadvantaged from achieving this potential because of social position or other socially determined circumstances.”² 

Health inequity: Preventable and unjust differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.³

Social determinants of health: Conditions in the environment in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.⁴

Trauma-informed care: An approach to engaging people with histories of trauma that recognizes the presence of trauma symptoms and acknowledges the role that trauma has played in their lives.⁵

• Other approaches such as healing-centered engagement are beginning to positively reframe trauma by focusing on resilience and collective strength.

References:

1. University of Wisconsin Population Health Institute. (2019). County Health Rankings & Roadmaps 2019. Retrieved from :www.countyhealthrankings.org
2. Centers for Disease Control and Prevention. (2020, March 11). National Centers for Disease Control and Prevention and Health Promotion. Retrieved from Health Equity: https://www.cdc.gov/chronicdisease/healthequity/index.htm
3. Centers for Disease Control and Prevention. (2008). Community Health and Program Services (CHAPS): Health Disparities among Racial/Ethnic Populations. Atlanta: U.S. Department of Health and Human Services
4. Centers for Disease Control and Prevention. (2018, January 29). Social Determinants of Health: Know What Affects Health. Retrieved from: https://www.cdc.gov/socialdeterminants/index.htm
5. Wisconsin Department of Health. (2020, April 10). Prevention and Healthy Living. Retrieved from Resilient Wisconsin: https//www.dhs.wisconsin.gov/tic/index.htm

Many cancer cases in Wisconsin can be prevented.

While some risk factors such as age or genetic risk cannot be changed, other risk factors such as health behaviors can be modified to lower risk and prevent disease.

The World Health Organization estimates that 30 to 50 percent of all cancer cases are preventable.¹ In the United States, health behaviors such as smoking and excessive alcohol consumption contribute to 42 percent of all cancer cases and 45.1 percent of all cancer deaths.²

In Wisconsin, we can reduce cancer risk significantly by:

• decreasing tobacco use and exposure.
• decreasing high-risk alcohol consumption.
• maintaining a recommended weight through physical activity and healthy diet.
• increasing protective behaviors from sun and UV exposure.
• increasing HPV and Hepatitis B vaccine utilization.
• reducing exposure to radon.

Personal health behaviors are strongly influenced by the environments in which we live, work, learn, and play. Environments that support health are those that include strong clean air laws; limited alcohol outlet density; access to safe green space, access to healthy food that is affordable and culturally appropriate; access to affordable preventive health care services; radon testing in homes and schools; workplace safety protections, and other structural factors that contribute to the personal health behaviors affecting cancer risk.

The Takeaway

Changes to certain health behaviors can reduce cancer cases and prevent cancer deaths significantly. We can reduce risk and prevent cancer by supporting health behavior changes, and by ensuring that every community has the resources needed to support healthy environments.

Together, we can reduce the risk of developing and dying from cancer.

Key Terms

Alcohol outlet density: The number of places where alcoholic beverages are sold (bars, liquor stores, etc.), either per physical area or per population.³

Binge drinking: A pattern of drinking that brings a person’s blood alcohol concentration (BAC) to 0.08 grams percent or above. This typically happens when men consume 5 or more drinks or women consume 4 or more drinks in about two hours.⁴

Built environment: All the physical parts of where we live, work, learn, play, and worship (e.g., homes, schools, buildings, streets, open spaces, and infrastructure). The built environment influences a person’s level of physical activity.⁵

Commercial tobacco: Tobacco that is manufactured by companies for recreational and habitual use in cigarettes, smokeless tobacco, pipe tobacco, cigars, hookahs, and other products. Commercial tobacco is mass-produced and sold for profit. It contains thousands of chemicals and produces over 7,000 chemical compounds when burned, many of which are carcinogenic, cause heart and other diseases, and premature death. This is different from traditional tobacco incorporated into sacred Native American traditions.⁶

E-cigarette: Battery-powered devices that work by heating a liquid into an aerosol that the user inhales and exhales. These products can be used to deliver nicotine, cannabis (THC and/or CBD), flavorings, chemicals, and other substances. E-cigarettes may be called by different names, such as electronic smoking devices, e-cigs, e-hookahs, vapes, vape pens, tank systems, electronic nicotine delivery systems (ENDS), pod-mods, or mods.⁷

Food desert: Parts of a community where it is hard to access healthy and affordable food. Food deserts may contribute to disparities in diet and diet-related health outcomes.⁸

Healthy diet: A diet that emphasizes fruits, vegetables, whole grains, and fat-free or low-fat milk and milk products; includes lean animal-based proteins and/or plant-based proteins; is low in saturated fats, trans fats, cholesterol, salt (sodium), and added sugars; and stays within a person’s daily calorie needs.⁹

Heavy drinking: For men, heavy drinking means consuming 15 drinks or more per week. For women, heavy drinking means consuming 8 drinks or more per week.⁴

Hepatitis B: A vaccine-preventable liver infection caused by the hepatitis B virus, which may progress into liver damage and subsequent cancer.¹⁰

Human papillomavirus (HPV): A virus with more than 100 types that can infect the genital areas, mouths, and throats of males and females. HPV causes six types of vaccine-preventable cancer: oropharyngeal (back of the throat, including the base of the tongue and tonsils), cervical, vulvar, vaginal, anal, and penile.¹¹

Obesity: Having a weight that is higher than what is recommended for a given height. Obesity results from a combination of causes and contributing factors, including individual factors and environmental factors such as access to healthy food and opportunities for physical activity, education, and exposure to food marketing.¹²

Radon: A radioactive gas that forms naturally when uranium, thorium, or radium break down in rocks, soil, and groundwater. People can be exposed when they inhale radon-containing air that comes through cracks and gaps in homes, schools, and other buildings. Radon exposure can lead to lung cancer.¹³

Radon mitigation: Any process or action that is done to reduce radon levels in a building or home.¹⁴

Recommended weight: Body Mass Index (BMI), which is based on a person’s height and weight, is an important screening tool for weight categories that are associated with other health problems. If an adult has a BMI within the normal parameters, they are considered to be at a recommended weight.¹⁵

SBI (Screening and Brief Intervention) and e-SBI (Electronic Screening and Brief Intervention): The tool providers use to assess patients’ drinking patterns; patients who screen positive for excessive drinking are offered a brief, face-to-face intervention that includes information about the risks of excessive drinking, how to change drinking patterns, and referral to treatment if appropriate. This can also be performed using electronic devices (e.g., computers, telephones, or mobile devices). ¹⁶

Standard drink: A standard drink is equal to 14 grams (0.6 ounces) of pure alcohol. ⁴ Generally, this amount of pure alcohol is found in:

• 12 ounces of beer (5% alcohol content)
• 8 ounces of malt liquor (7% alcohol content)
• 5 ounces of wine (12% alcohol content)
• 5 ounces or a “shot” of 80-proof distilled spirits or liquor (40% alcohol content), e.g., gin, rum, vodka, whiskey

References: 

1. World Health Organization. Cancer Prevention. https://www.who.int/cancer/prevention/en/. Updated 2020. Accessed February 12, 2020.
2. Islami F, Goding Sauer A, Miller KD, et al. Proportion and number of cancer cases and deaths attributable to potentially modifiable risk factors in the united states. CA Cancer J Clin. 2018;68(1):31-54. doi: 10.3322/caac.21440 [doi].
3. Centers for Disease Control and Prevention. (2017). Guide for Measuring Alcohol Outlet Density. Retrieved from: https://www.cdc.gov/alcohol/pdfs/CDC-Guide-for-Measuring-Alcohol-Outlet-Density.pdf
4. Centers for Disease Control and Prevention. (2020, January 15). Alcohol and Public Health. Retrieved from Frequently Asked Questions about Alcohol: https://www.cdc.gov/alcohol/faqs.htm
5. Centers for Disease Control and Prevention. (2011, June). Impact of the Built Environment on Health. Retrieved from: https://www.cdc.gov/nceh/publications/factsheets/impactofthebuiltenvironmentonhealth.pdf
6. Keep It Sacred. (n.d.) Commercial Tobacco. Retrieved from http://keepitsacred.itcmi.org/tobacco-and-tradition/commercial-tobacco/
7. Centers for Disease Control and Prevention. (2020, February 24). Smoking & Tobacco Use. Retrieved from About Electronic Cigarettes: https://www.cdc.gov/tobacco/basic_information/e-cigarettes/about-e-cigarettes.html
8. Beaulac, J., Kristjansson, E., & Cummins, S. (2009). A Systematic Review of Food Deserts, 1966-2007. Preventing Chronic Disease, 6(3). Retrieved from https://www.cdc.gov/pcd/issues/2009/jul/08_0163.htm
9. Centers for Disease Control and Prevention. (2020, March 2). Healthy Eating for a Healthy Weight. Retrieved from Healthy Eating for a Healthy Weight: https://www.cdc.gov/healthyweight/healthy_eating/index.html
10. Centers for Disease Control and Prevention. (2020, March 16). Viral Hepatitis. Retrieved from Hepatitis B: https://www.cdc.gov/hepatitis/hbv/index.htm
11. Centers for Disease Control and Prevention. (2019, April 29). Human Papillomavirus (HPV). Retrieved from About HPV: https://www.cdc.gov/hpv/parents/about-hpv.html
12. Centers for Disease Control and Prevention. (2020, February 4). Overweight and Obesity. Retrieved from Adult Obesity Causes & Consequences: https://www.cdc.gov/obesity/adult/causes.html
13. Centers for Disease Control and Prevention. (2020, January 8). National Center for Environmental Health. Retrieved from Protect Yourself and Your Family from Radon: https://www.cdc.gov/features/protect-home-radon/index.html
14. Iowa Cancer Consortium. (2018). Iowa Cancer Plan. Retrieved from: https://canceriowa.org/wp-content/uploads/2019/09/2018-2022_Iowa-Cancer-Plan.pdf
15. Wisconsin Collaborative for Healthcare Quality and the University of Wisconsin Health Innovation Program. Wisconsin Health Disparities Report, 2019. Retrieved from: https://www.wchq.org/pdfs/Disparities_Report_2019_9-20_FINAL.pdf
16. The Community Guide. (2012, August). Alcohol – Excessive Consumption: Electronic Screening and Brief Interventions (e-SBI). Retrieved from https://www.thecommunityguide.org/findings/alcohol-excessive-consumption-electronic-screening-and-brief-interventions-e-sbi

Screening for cancer can save lives.

Screening and early detection can find cancer at earlier stages when it is easier to treat, and can identify pre-cancers that can be addressed before cancer occurs.

Some patients and families have a higher genetic risk for certain cancers. Genetic counseling and testing can help identify patients who may need increased cancer screening or screening at earlier ages.

Cancer screening recommendations can evolve and develop over time. As of 2020, the US Preventive Services Task Force (USPSTF) recommends screening guidelines for breast, cervical, colorectal, and lung cancers based on current evidence. The Affordable Care Act of 2010 requires that insurers cover these cancer screenings and other preventative services recommended by the USPSTF. Health care providers and patients should determine which cancer screenings are needed based on a patient’s individual risk.

The routine use of cancer screenings can dramatically reduce mortality. However, significant disparities must be addressed to ensure equitable cancer screening benefits for all Wisconsinites.

Cancer screening efforts in Wisconsin

As of 2018, Wisconsin screening rates for breast, cervical, and colorectal cancers were around or above national averages¹:

• 67 percent of women ages 45 years and older had an up-to-date mammography.
• 88 percent of women ages 21-65 had received a Pap and/or HPV test.
• 74 percent of women and men ages 50 and older had received a stool test and/or endoscopy (including either flexible sigmoidoscopy or colonoscopy).

Unfortunately, specific populations in Wisconsin experience significant disparities in screening access and completion, by gender, race, sexual orientation and gender identity, insurance coverage, and socioeconomic status. For example, while overall colorectal cancer screening in Wisconsin is on the rise, rates are much lower among African Americans than among whites. Screening occurred more frequently in women and people aged 65 to 75, who were likely insured by Medicare.²

Screening disparities can lead to considerable differences in mortality rates and often are caused by barriers such as:

• limited clinic hours
• transportation access
• the perceived (or actual) cost of screening, diagnostic, and follow-up care
• access to diagnostic and follow-up care
• inadequate provider communication or follow-up
• biased care
• fear of stigma
• fear of the financial, emotional, and/or other impacts of a cancer diagnosis
• lack of accessible information regarding why screening is important

The Takeaway

Timely recommended screenings can prevent disease and suffering. We can reduce barriers to ensure all Wisconsinites are able to access and complete the cancer screenings they need.

Together, we can save lives and reduce suffering by detecting cancer at the earliest stage possible.

Key Terms

Genetic counseling: A communication process between a specially trained health professional and a person concerned about their genetic risk of disease. The person’s family and personal medical history may be discussed, and counseling may lead to genetic testing.³

Genetic risk: The increased likelihood of developing a disease based on a person’s genetic makeup. This may include family history, genetic variations and/or mutations, and behavioral or environmental factors that interacts with genetics.⁴

Genetic testing: The process of analyzing a patient’s sample (usually blood or saliva) for changes in the inherited material (DNA which is made up of genes) to determine if there is a predisposition to developing a health condition, such as cancer. Another type of genetic testing is called molecular profiling (using tumor tissue or circulating tumor DNA in the blood) which looks for acquired changes in the tumor DNA to help diagnose cancer, determine treatment, or find out how well treatment is working.⁵

Structural barriers: Non-economic obstacles that make it difficult for people to access cancer screening. These could include barriers such as transportation, hours and locations of services, referral processes, translation services, among other factors.⁶

References:

1. American Cancer Society. (2020). Wisconsin At a Glance. Retrieved from: https://cancerstatisticscenter.cancer.org/#!/state/Wisconsin
2. Centers for Disease Control and Prevention. (2016). Colorectal Cancer (CRC) Screening in Wisconsin. Retrieved from https://www.cdc.gov/cancer/ncccp/screening-rates/pdf/colorectal-cancer-screening-wisconsin-508.pdf
3. National Cancer Institute. (2020, February 28). Cancer Genetics Risk Assessment and Counseling (PDQ®)–Health Professional Version. Retrieved from Genetic Counseling: https://www.cancer.gov/about-cancer/causes-prevention/genetics/risk-assessment-pdq
4. National Cancer Institute. (2020, February 28). Genetics. Retrieved from Cancer Genetics Risk Assessment and Counseling (PDQ®)–Health Professional Version: https://www.cancer.gov/about-cancer/causes-prevention/genetics/risk-assessment-pdq
5. National Cancer Institute. (2019, March 15). Genetics. Retrieved from Genetic Testing for Inherited Cancer Susceptibility Syndromes: https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet
6. The Community Guide. (2013, September 25). Community Preventative Services Task Force. Retrieved from: https://www.thecommunityguide.org/sites/default/files/assets/Cancer-Screening-Reducing-Structural-Barriers.pdf

An estimated 35,280 new cancers will be diagnosed among Wisconsinites in 2020.¹

The majority of these patients will seek active treatment with the goal of curing the disease and/or prolonging life.

While cancer remains a leading cause of death in Wisconsin, advances in treatment are responsible, in part, for the state’s growing population of cancer survivors. Put simply, quality and timely cancer treatment can save lives.

Unfortunately, Wisconsinites can face numerous barriers in accessing cancer treatment that is quality, timely, and affordable. These barriers can include but are not limited to: delayed diagnosis, insurance coverage, distance from cancer treatment facilities, and difficulty navigating the complex health care system.

Cancer treatments can take a physical, mental, emotional, social, and financial toll on patients, their caregivers, and support systems. In addition, the cost of treatment can create significant and lasting hardship for survivors and families. In numerous national studies, 48 to 73 percent of cancer survivors reported adverse financial effects resulting from the high costs of cancer treatments.^{2, 3}

Fortunately, credible, evidence-based treatment guidelines can be used to reduce variation in the provision of cancer care, thereby improving health outcomes, patient well-being, and the cost-effectiveness of care.

What are common treatment options*?

• Surgery: a procedure in which a surgeon removes cancer from the body
• Radiation therapy: a type of cancer treatment that uses high doses of radiation to kill cancer cells and shrink tumors
• Chemotherapy: a type of cancer treatment that uses drugs to kill rapidly growing cells, including cancer cells
• Immunotherapy: a type of cancer treatment that helps boost the body’s own immune system to treat cancer
• Targeted therapy: a type of cancer treatment that uses unique parts of the cancer cells to kill cancer cells and tumors
• Hormone therapy: a treatment that slows or stops the growth of breast and prostate cancers that use hormones to grow
• Palliative care: care given in conjunction with other treatment or by itself to maximize the quality of life and comfort of patients who have a serious or life-threatening disease

*People with cancer may have only one treatment or various combinations of treatments, depending on the type, stages, and location of the cancer. There may be other treatments not listed here.

Key Terms

Advance care planning: The process of deciding and sharing a person’s preferences about receiving health care if they later become unable to speak for themselves. These preferences are usually stated in documents called advance directives.⁴

Advance directives: Legal documents that states a person’s wishes about receiving medical care if that person is no longer able to make medical decisions because of a serious illness or injury. Advance directives also may give a person the authority to make medical decisions for another person when that person can no longer make decisions for themselves.⁵ These documents generally include a health care power of attorney and a living will.

Caregiver: A person who gives care to someone living with a cancer diagnosis. Caregivers may be family members, friends, health professionals, social workers, or members of the clergy. They may give care at home or in a hospital or other health care setting.⁶

Chemotherapy: Treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. Chemotherapy may be given by mouth, injection (intravenous or otherwise), infusion, or on the skin, depending on the type and stage of the cancer being treated. It may be given alone or with other treatments, such as surgery, radiation therapy, or immunotherapy.⁷

Clinical trials: A type of research study that tests how well new medical approaches work in people. Clinical trials are used to test new methods of screening, prevention, diagnosis, or treatment of a disease. Also called clinical study.⁸

Genetic testing: The process of analyzing a patient’s sample (usually blood or saliva) for changes in the inherited material (DNA which is made up of genes) to determine if there is a predisposition to developing a health condition, such as cancer. Another type of genetic testing is called molecular profiling (using tumor tissue or circulating tumor DNA in the blood) which looks for acquired changes in the tumor DNA to help diagnose cancer, determine treatment, or find out how well treatment is working.⁹

Immunotherapy: A type of treatment that uses substances to stimulate the immune system to help the body fight cancer, infection, and other diseases.¹⁰

Palliative care: Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or reduce the symptoms of a disease, side effects caused by treatment, and the psychological, social, and spiritual problems related to a disease or its treatment. Also called palliative medicine, comfort care, supportive care, and symptom management. Palliative care can begin at any time during treatment and can occur alongside curative treatment when resources are available.¹¹

Prior authorization: A decision by a health insurer that a particular health care service, treatment plan, prescription drug, or medical equipment is medically necessary. Sometimes called prior approval or precertification.¹²

Quality of life: The overall enjoyment of life, including an individual’s sense of well-being and ability to carry out various everyday activities.¹³

Support services: Non-medical support, information, and financial resources available to cancer patients and caregivers.¹⁴

The Takeaway

Every Wisconsinite deserves access to affordable, timely, quality cancer treatment options. New cancer treatments and research are emerging, offering hope and promise. Further work is necessary to eliminate barriers to treatment and reduce both the financial repercussions and the health side effects that negatively affect cancer survivors and their support systems.

Together, we can increase access to quality cancer care, non-clinical supports, and clinical trials, to reduce death and suffering caused by cancer.

What populations are underrepresented in cancer-related clinical trials?

• All racial and ethnic minority groups
• Sexual and gender minorities
• Persons living in rural areas
• Persons with longer travel distances to receive trial services
• Persons living with low socioeconomic status
• Persons who speak English as their second language
• Persons living with medically complex situations (such as persons living with HIV)
• Older adults
• Populations that require additional research oversight

References:

1. American Cancer Society. (2020). Wisconsin At a Glance. Retrieved from: https://cancerstatisticscenter.cancer.org/#!/state/Wisconsin
2. Gordon, L. G., Merollini, K. M., Lowe, A., & Chan, R. J. (2017). A systematic review of financial toxicity among cancer survivors: we can’t pay the co-pay. The Patient-Patient-Centered Outcomes Research, 10(3), 295-309.
3. Lentz, R., Benson III, A. B., & Kircher, S. (2019). Financial toxicity in cancer care: Prevalence, causes, consequences, and reduction strategies. Journal of surgical oncology, 120(1), 85-92.
4. National Institutes of Health. (2018, January 15). National Institute on Aging. Retrieved from Advance Care Planning: Healthcare Directives: https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives
5. National Cancer Institute. (2015, March 10). Advance Directives. Retrieved from https://www.cancer.gov/about-cancer/managing-care/advance-directives
6. National Cancer Institute. (2020, January 3). Coping with Cancer. Retrieved from Support for Caregivers of Cancer Patients: https://www.cancer.gov/about-cancer/coping/caregiver-support
7. National Cancer Institute. (2015, April 29). Chemotherapy to Treat Cancer. Retrieved from https://www.cancer.gov/about-cancer/treatment/types/chemotherapy
8. National Cancer Institute. (2020, February 4). Clinical Trials Information. Retrieved from What Are Clinical Trials: https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials
9. National Cancer Institute. (2019, March 15). Genetics. Retrieved from Genetic Testing for Inherited Cancer Susceptibility Syndromes: https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet
10. National Cancer Institute. (2019, September 24). Types of Cancer Treatment. Retrieved from Immunotherapy to Treat Cancer: https://www.cancer.gov/about-cancer/treatment/types/immunotherapy
11. National Cancer Institute. (2017, October 20). Palliative Care in Cancer. Retrieved from https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet
12. gov. (n.d.). Preauthorization. Retrieved from https://www.healthcare.gov/glossary/preauthorization/
13. National Cancer Institute. (n.d.). NCI Dictionary of Cancer Terms. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms
14. National Cancer Institute. (2019, November 8). Support Services. Retrieved from https://www.cancer.gov/about-cancer/managing-care/services/support

More people in Wisconsin, and the nation, are surviving cancer.

In 2019, almost 300,000 Wisconsinites were living with a cancer diagnosis.¹ This number is expected to grow by tens of thousands every year, as advancements occur for early detection and treatment, and as the population grows and ages.

In 2019, 67 percent of US cancer survivors (10.3 million people) had survived five or more years after their diagnosis.² More than 16.9 million Americans with a history of cancer were alive, with many more projected to survive in the near future.³

Cancer survivors regularly report unique challenges, health issues, and quality-of-life concerns long after treatment ends. We can respond to the diverse needs of Wisconsin’s growing survivor population by addressing cancer survivorship issues across the cancer care continuum.

How we define “cancer survivorship”

According to the National Cancer Institute (NCI), “an individual is considered a cancer survivor from the time of diagnosis, through the balance of their life.”⁴ Survivors include those with a current diagnosis and those now free from cancer. Caregivers (often called “co-survivors”), family members, and friends are an important part of the survivor experience.

Cancer survivorship refers to “the health and life of a person with a cancer, post-treatment until the end of life.” ⁴ Cancer survivorship issues can include:

• The long-term physical, mental, emotional, social, and financial effects of cancer
• The ability to access health care and follow-up treatment
• The transition from active cancer treatment to post-treatment primary care
• The effects of cancer that are late to emerge
• The risk of subsequent cancers
• Quality of life and well-being

The Takeaway

Cancer should be considered a chronic disease with long-term risks, adverse health impacts, and unique quality-of-life concerns that may last throughout a person’s lifetime. Special effort should be taken to educate providers about survivorship needs. To reduce the burden of subsequent cancers among survivors, we should focus attention on risk reduction, prevention, and screening strategies within this population.

Together, we can improve the long-term quality of life for Wisconsin’s growing number of cancer survivors.

Key Terms

Cancer survivor: An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life.⁴ Survivors include those with a current diagnosis and those now free from cancer.

Caregiver: A person who gives care to someone living with a cancer diagnosis. Caregivers may be family members, friends, health professionals, social workers, or members of the clergy. They may give care at home or in a hospital or other health care setting or from afar.⁵

Co-survivor: The persons who support cancer survivors and who are affected by their diagnosis, including family members, friends, colleagues, and caregivers.

Survivorship care plan: A detailed plan given to a patient after treatment ends that contains a summary of the patient’s treatment, along with recommendations for follow-up care.⁶

References:

1. National Cancer Institute. (2019). State Cancer Profiles: Wisconsin. Retrieved from: https://statecancerprofiles.cancer.gov/quick-profiles/index.php?statename=wisconsin#t=3
2. Bluethmann SM, Mariotto AB, Rowland, JH. Anticipating the “Silver Tsunami”: Prevalence Trajectories and Comorbidity Burden among Older Cancer Survivors in the United States. Cancer Epidemiol Biomarkers Prev. 2016; 25:1029-1036.
3. Miller, K. D., Nogueira, L., Mariotto, A. B., Rowland, J. H., Yabroff, K. R., Alfano, C. M., … & Siegel, R. L. (2019). Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin, 69(5), 363-385.
4. National Cancer Institute. (2020). Office of Cancer Survivorship. Retrieved from Statistics, Graphs and Definitions: https://cancercontrol.cancer.gov/ocs/statistics/index.html#definition-survivorship
5. National Cancer Institute. (2020, January 3). Coping with Cancer. Retrieved from Support for Caregivers of Cancer Patients: https://www.cancer.gov/about-cancer/coping/caregiver-support
6. National Cancer Institute. (2019, October 4). Survivorship. Retrieved from Follow-Up Medical Care: https://www.cancer.gov/about-cancer/coping/survivorship/follow-up-care

Cancer is a leading cause of death in Wisconsin.

Quality end-of-life care can reduce suffering and is an essential component of cancer care.

Conversations about potential end-of-life concerns should begin at the earliest possible stage after diagnosis. Advance care documents can give patients, providers, caregivers, and family members the opportunity to discuss the patient’s wishes, concerns, and goals of care.

For patients, caregivers, and families, end-of-life concerns can be physical, psychological, social, and spiritual. Additional training may be needed to help medical professionals better understand and respond to these concerns; such training should include strategies to support the emotional and mental health needs of health care providers engaged in end-of-life work.

The Takeaway

Everyone in Wisconsin deserves to approach the end of life with dignity. This can be achieved by increasing access to culturally competent end-of-life care, including palliative medicine and hospice. Likewise, health care providers deserve the training and mental health supports needed to assess and respond to the end-of-life concerns of patients and families.

Together, we can reduce suffering from cancer for patients and their loved ones.

Key Terms

Advance care planning: The process of deciding and sharing a person’s preferences about receiving health care if they later become unable to speak for themselves. These preferences are usually documented in documents called advance directives.²

Advance directives: Legal documents that states a person’s wishes about receiving medical care if that person is no longer able to make medical decisions because of a serious illness or injury. Advance directives also may give a person the authority to make medical decisions for another person when that person can no longer make decisions for themselves.³

Hospice: A program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness, so patients can be as comfortable and alert as possible. It is usually given at home, but may also be given in a hospice center, hospital, or nursing home.⁴

Palliative care: Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or reduce the symptoms of a disease, side effects caused by treatment, and the psychological, social, and spiritual problems related to a disease or its treatment. Palliative care can begin at any time during treatment and can occur alongside curative treatment.⁵

References:

1. National Hospice and Palliative Care Organization. (2017). Some Differences Between Palliative Care and Hospice. Retrieved from https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care Published with permission of the National Hospice and Palliative Care Organization, all rights reserved. For a more complete chart please see: https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf
2. National Institutes of Health. (2018, January 15). National Institute on Aging. Retrieved from Advance Care Planning: Healthcare Directives: https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives
3. National Cancer Institute. (2015, March 10). Advance Directives. Retrieved from https://www.cancer.gov/about-cancer/managing-care/advance-directives
4. National Cancer Institute. (2018, September 19). Choices for Care When Treatment May Not Be an Option. Retrieved from Hospice Care: https://www.cancer.gov/about-cancer/advanced-cancer/care-choices#HC
5. National Cancer Institute. (2017, October 20). Palliative Care in Cancer. Retrieved from https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

To understand the full burden and impact of cancer in Wisconsin, we need reliable, quality data.

Data helps us understand where to allocate our resources, where progress is made, and where we need additional work.

Wisconsin has robust public health data systems, including a Wisconsin population-based cancer registry (the Wisconsin Cancer Reporting System). Unfortunately, some populations within Wisconsin are underrepresented in the data that helps us identify differences in cancer risk and health outcomes. Areas for improvement exist in data collection, use of existing data, and increasing the linkages with other data systems.

Data opportunities in Wisconsin

Data drives the decisions, policies, strategies, and activities that work to collectively improve and prevent cancer outcomes in Wisconsin. To enhance cancer data in Wisconsin, several opportunities exist:

• Establish and maintain data agreements to report all cancer cases from Wisconsinites who receive care in Minnesota (or other nearby states).
• Improve the ability of health care systems to report racial identifiers and other underreported fields to produce more accurate estimations of cancer cases and mortality.
• Increase the number of certified tumor registrars and trained cancer reporters across Wisconsin, to improve timely data collection and dissemination.

The Takeaway

To better understand the impact of cancer in Wisconsin, we need to improve the ongoing, timely, and systematic collection and analysis of cancer and cancer risk data—especially data that reflect the outcomes and health status related to disparately impacted populations.

Key Terms

Behavioral Risk Factor Surveillance System (BRFSS): The nation’s system of health-related telephone surveys that collect state data about United States residents 18 years and older regarding their self-reported “health-related risk behaviors, chronic health conditions and use of preventive services.”¹

Incidence: The number of new cases of a disease diagnosed each year.²

Mortality: In medicine, this term is used for death rate, or the number of deaths in a certain group of people in a certain period.³

SEER: The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program provides information on cancer statistics in an effort to reduce the cancer burden among the US population.⁴

Wisconsin Cancer Reporting System (WCRS): The Wisconsin population-based cancer registry, which provides direct access to information about cancer incidence and mortality in Wisconsin.⁵

References:

1. 1. Centers for Disease Control and Prevention. (2019, November 5). Behavioral Risk Factor Surveillance System. Retrieved from https://www.cdc.gov/brfss/index.html
   2. National Cancer Institute. (n.d.). NCI Dictionary of Cancer Terms. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms
   3. National Cancer Institute. (n.d.). NCI Dictionary of Cancer Terms. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms
   4. National Cancer Institute. (n.d.). Surveillance, Epidemiology, and End Results Program. Retrieved from https://seer.cancer.gov/
   5. Wisconsin Cancer Reporting System (WCRS): Wisconsin Department of Health Services. (2019, February 12). Wisconsin Cancer Reporting System. Retrieved from https://www.dhs.wisconsin.gov/wcrs/index.htm