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Community Cancer Clusters

Community Cancer Clusters. Monica Brown, PhD Cancer Epidemiologist, the California Cancer Registry. Cancer Biology (BIO-183), Dr . Hao Nguyen February 21 , 2011 Sacramento State University, Dept of Biological Sciences.

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Community Cancer Clusters

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  1. Community Cancer Clusters Monica Brown, PhD Cancer Epidemiologist, the California Cancer Registry Cancer Biology (BIO-183), Dr. Hao Nguyen February 21, 2011 Sacramento State University, Dept of Biological Sciences

  2. What Drives the Public’s Concern of the Clustering of Cancers in Communities & Workplaces? • There is considerable public concern that environmental exposures cause an excess in cancers in some communities. • The public believes environmental pollutants/toxins increase risk of cancer – although. • Cancer clusters may be suspected when people notice that several family members, friends, neighbors or co-workers have been diagnosed with cancer. • Although the distribution of cancers may be “normal” given the age, sex, race/ethnic and lifestyle of that group.

  3. … continued • Other phenomena that may drive suspicion of environmental cancer clusters are... • Media reports sensationalized cancer clusters • Distrust of government, manufacturing & business • Fear that we’ve created an environment filled with hazards that is causes us & our families harm • The perceived inability to control cancer risk & environmental hazards • Ever changing & varied Public Health (PH) messages

  4. What We know Cancers are common!1 in 5 Californians will have a cancer in their lifetime Cancers are complex diseases! Cancer is a general term for many diseases – most with different etiologies; many of which are unknown Cancer incidence varies predictably by age, sex, race/ethnicity & risk factors. Community members can be similar in age, SES, race/ethnicity & lifestyles – these factors contribute more to cancer incidence than shared environment

  5. What We know, continued • There’s no evidence that carcinogens in amounts typically present in the air, soil or drinking water increases the risk of developing cancer in the general population • Exposure to a carcinogen and the onset of cancer is not certain, other factors, some known, may be required. When cancer does develop, the onset can be decades from exposure. • Knowledge of cancer causes, its distribution and prevention varies greatly in the general public – • PH has done a poor job educating the public about cancer; therefore the public has many misconceptions about cancer & cancer clusters

  6. Causes of Cancer • Family History/Genetics • Family History 5% • Prenatal Factors/Growth 5% • Reproductive Factors 3% Family History/Genetics 13% Environment/ Occupation 19% • Environmental/Occupation • Occupation 5% • Viruses/other biologics 5% • SES 3% • Pollution 2% • Radiation 2% • Other 2% • Lifestyle • Tobacco Use 30% • Diet 10% • Physical Inactivity 5% • Alcohol Use 3% • Other 20% Lifestyle 68% Source: Harvard Report on Cancer Prevention, 1996

  7. Common Misconceptions about Cancer Clusters

  8. Examples of Documented Cancer Clusters

  9. Cancer Clusters in California

  10. The California Cancer Registry • The California Cancer Registry (CCR) is administered by the California Department of Public Health (CDPH). • The CCR is a true population-based registry. • Cancer reporting is mandated for hospitals & physicians. • Every case diagnosed among residents reported since 1988 • Data collected by the registry are used: • To monitor incidence & mortality. • For research into the causes, cures & prevention of cancer; • To produce reports including the state & regional reports; the American Cancer Society’s Cancer Facts & Figures • The evaluation of community cancer concerns.

  11. an aggregation of cancer cases that has been determined to be unusual when compared to the cancers that would be expected if the group of location in question had the same cancer rates as the underlying population. The cluster must differ substantially from the expected pattern in number, type, or the age of cases. The CCR defines a Cancer Cluster as…

  12. When a Californian has a Cancer Concern: the Role of the CCR The CCR and it’s regional cancer registries respond to numerous requests for evaluation of community and workplace cancer concerns. The registry’s role is to statistically assess whether the number of cases of targeted cancers observed in a community or workplace are significantly greater than what would be expected. If there is a statistically significant excess of cases, report to the Environmental Health Investigations Branch (EHIB) of CDPH who will investigate.

  13. The CCR does not … Conduct epidemiologic “outbreak”, clinical or laboratory investigations. On-site surveys of residents or employees to assess risk. Direct others in exposure assessments. Coordinate the efforts of other state and county agencies in their investigations.

  14. CCR Procedures for Evaluation of a Reported Cancer Cluster

  15. Step One: Obtain Information from Informant Caller’s name & address; affiliation (community member) Number of specific cases observed Cancer type(s) observed Age, sex, race/ethnicity of cases Geographic area or group Time period of concern Method of observation – how did the caller learn of the cases

  16. Step Two: Provide Cancer Education & Information to Informant Note: Do not assume that everyone has access to or can use the internet • Education • The frequency of specified cancers in their community or County • Risk factors for specified cancers • If knowledgably, discuss agent and/or exposure • Information • American Cancer Society (ACS) • Centers for Disease Control and Prevention (CDC) • The National Institutes of Health (NIH) • Agency for Toxic Substances and Disease Registry (ATSDR)

  17. Other Considerations Step Three: Determine if an Evaluation is Needed Indications for Statistical Evaluation Are cancers unusual in number, type or age of patients? Has a potential carcinogenic agent been identified? If a specific exposure is suspected – test 1st – call County Environmental Health, Environmental Protection Agency (EPA) or if workplace, Occupational Safety and Health Agency (OSHA) Is there a plausible exposure pathway? Is the request coming from a another State agency or from a County Health Department? Is informant representing a community or workplace action group? Are children involved? Is this perceived cancer cluster “political” or is it already being followed by the press?

  18. Further Action is Warranted

  19. Step Four: Explain Procedure, Limitations & Provide Timeline to Informant • Procedure • We use registry data to confirm case information & determine clinical characteristics of cancers • We use census data for denominators (population at risk) • Perform calculations, write report to county & state. • In the event of a statistically significant excess of cancers, we refer case to EHIB for investigation • Limitations • CCR will not contain most recently diagnosed cases • Only a substantial increase in risk is likely to be detected • We lack information on length of residence and risk factors that may contribute to developing cancer • Timeline: 1-3 months

  20. Workplace Cancer Concerns: Barriers to Evaluations • Obtaining appropriate information on ill & well (population at risk) employees from employers is difficult to impossible. • Sometimes we must obtain permission from employees to access their medical records. • Assessing biologic plausibility: Does the suspected workplace agent associated with increased risk of the reported cancers? • Does workplace exposure have an impact? • direct vs. indirect • length of exposure (workday/year(s)) • mode of exposure (eat/drink, inhale etc.) • What other risk factors could increase risk of developing reported cancers, that cannot be assessed? • smoking, drinking & diet • What cancers would be “normal” for this employee population – given age, sex, race/ethnicity & lifestyle • Are there behaviors that are common in this employee group?

  21. Step Five: Consult and Notify Relevant Officials of Report Management hierarchy of CDPH County Health Officer Workplace management

  22. Step Six: Conduct Assessment

  23. Step Seven: Communicate Results • Report results of evaluation to the … • Informant • County Health Officer • CSRB management hierarchy • If results show a statistically significant excess in cases, include … • EHIB • CDPH public affairs office

  24. Challenges & Conclusions

  25. Greatest Challenge: Communicating Results to the Public • Science • Scientific evidence is inconclusive, contradictory and ever-changing • Current scientific evidence is not absolute. Therefore, we cannot give definitive answers. • Scientific method - descriptions of methodological limitations and results can sound evasive. • Complicated scientific Concepts: • Random events: 1% of all census tracts would have higher or lower cancer rates simply by chance • No one has ever called me and said “… there’s too few cancers in my neighborhood”. • public seemingly can only grasp concept if discussing the lottery.

  26. Communicating Results to the Public, continued • Epi & Stat Concepts • Often case and/or population numbers are too small for appropriate statistical analysis, and we are unable to conduct analysis. • sometimes viewed as demeaning the current number of cases. • sometimes viewed as evasive or manipulative. • For environmentally based cancer concerns, we examine only related cancers not “all cancers” due to etiologic differences in cancers – often public thinks all cancers are germane. • Causality - if cluster confirmed statistically, doesn’t mean cancer is due to a single causal pathway.

  27. Communicating Results to the Public, continued • Epidemiologists & Statisticians (us) • Objectiveness viewed as lack of empathy. • Expertise viewed as “Ivory Tower’ism” • We are not good at saying we don’t know

  28. In Conclusion • Cancer clusters DO occur in communities, but are difficult to investigate and nearly impossible to prove. • Our tools to investigate are crude and we often lack pertinent information or time to see the natural history of events. • Cancer never 1st disease manifestation in true cluster • From exposure to diagnosis can be 20 – 50 years, depending on carcinogen • Most prevalent cancers are not strictly caused by environmental exposures – i.e., lung or prostate cancer • Ignorance: what we think is harmless today, tomorrow we may learn is dangerous. • We must take responsibility and precautions to safeguard our health.

  29. For More Information on Cancer Clusters • ACS: http://www.cancer.org/Cancer/CancerCauses/OtherCarcinogens/GeneralInformationaboutCarcinogens/cancer-clusters • NIH: http://www.cancer.gov/cancertopics/factsheet/Risk/clusters • CDC: http://www.cdc.gov/nceh/clusters/ • ATSDR: http://www.atsdr.cdc.gov/csem/cluster/docs/clusters.pdf

  30. Calculating Disease Risk Harvard School of Public Health, Disease Risk Profile: http://www.diseaseriskindex.harvard.edu/update/hccpquiz.pl?lang=english&func=home&page=cancer_index

  31. Thank You!

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