Description of In Situ Tumors Reported to Cancer Registries, 1995-2005 Holly L. Howe, PhD Xiao-Cheng Wu, MD, MPH NAACCR Annual Conference San Diego, CA June 2009

Background In situ tumors are generally reportable to a population-based cancer registry for information on the full spectrum of tumor progression However, these tumors, are not used in cancer surveillance nor in cancer incidence statistics. Exceptions breast cancer in situ and bladder cancer in situ

Is there value collecting reports that are not used? Question? Is there value collecting reports that are not used? Particularly in a time of diminishing resources and increasing volume of reports due to the aging of the population.

Purpose 1 and 2 Describe the volume of reports and their epidemiologic characteristics, i.e., variation by cancer site, year of diagnosis, age, sex, race/ethnicity, U.S. urban/rural location, histology, and affiliation For sites with sufficient counts, in situ tumors were compared with their invasive counterparts

Method Used the CINA Deluxe 1995-2005 dataset Describe the volume of reports and their characteristics Examined trend in volume of in situ reports. Compared in situ reports with invasive reports within cancer types/sites. Evaluate data quality of in situ tumor reports.

Definitions SEER program was defined by five areas: Iowa, Connecticut, Hawaii, New Mexico, and Utah, as they were in the SEER program for the entire period, 1995-2005. All other U.S. states were defined as part of the U.S. NPCR program (including SEER metro in NPCR states). NHIA v2 was used for Hispanic ethnicity. AI/AN was enhanced through I.H.S. linkage for all years of data available on the file.

U.S. registries included in CINA, 1995-2005

Results: Data Quality Issues Inconsistencies between assignment of in situ behavior and in situ stage codes. From 1995 to 2000, no inconsistencies From 2001-2003, no inconsistencies. For 2004-2005 cases, inconsistencies were found depending on whether in situ cases were selected by Derived Stage 2000 or by behavior, and the number of inconsistencies differed based on the selection method. We omitted all cases from the analysis with inconsistent in situ behavior and Derived Stage 2000 codes.

DQ Recommendation & Solution Feedback to the standard-setters has resulted in a modification of these tools [EDITS] so that the errors found in this study will be able to be rectified at the reporting source. Future investigators should be able to get a clean data set for study. Complete DQ report is posted on the NAACCR website under cancer research.

Results: Volume of In situ Reports 836,298 in situ tumors were identified, or 5.8% of the 14,425,739 tumors reported to the registries. The largest numbers and rates of in situ tumors occurred for cancer of the breast, melanoma, and colo-rectum.

Cancer In Situ Sites 13 sites where the rate ratio of in situ-to-invasive cases exceeded the average of 6.14% for all sites combined: floor of the mouth; descending colon; sigmoid colon; rectum; anus; larynx; melanoma; breast; vagina; vulva; penis; ureter; and eye. These accounted for 91% of all in situ cases.

Invasive

Invasive RR %

Grouped these 13 sites Screening Sites Early Awareness Sites Breast Sigmoid colon Descending colon Anus Melanoma HPV Sites Vagina Vulva Penis Early Awareness Sites Floor of Mouth Larynx Ureter Eye

Race

Trends in In Situ Reports Rates were statistically significantly increasing from 1995 through 2005 at 3.8% per year. Rates of invasive tumors were decreasing, although not significantly, at -0.14% per year.

Conclusion 1 The number of in situ cases (836,298) is 5.8% of all cancers reported. The trend of in situ reports is significantly increasing over time.

Conclusion 2 The rate of in situ tumors in cancer sites with screening opportunities are higher than the in situ rate for all cancers ?reflecting that these modalities do detect disease at the earliest time of disease progression? The rate ratio of in situ disease in cancer sites associated with HPV-risk was higher than average reflecting medical surveillance of high-risk populations resulting in earlier detection.

Conclusion 3 The pattern of in situ tumors, and their descriptive characteristics, generally follows that of invasive tumors: higher rates in invasive tumors would predict higher rates for in situ tumors. One notable exception was the higher in situ rates in women, primarily attributable to female breast cancer in situ reports.

Conclusion 4 Collecting in situ reports as part of the full spectrum of disease progression is valuable. Benefit most likely outweighs costs since uses cannot not always be predicted and the need for the data is dynamic; experience has shown need is not always anticipated or known.

Conclusion 5: [cont'd] A census enables us to be immediately responsive to the advent and adoption of early detection modalities; changes in cancer risk and exposures; emerging trends or disparities in specific population groups. Ex: breast cancer in situ, HPV-related tumors Unforeseen changes can be identified through cancer surveillance across the disease progression

Recommendation Could we expand uses of the in situ data reported? Could they be useful in programs such as State/Provincial Cancer Profiles? Read the complete report of the results and the quality assurance report available from NAACCR. Check the Epi reports section on the NAACCR web site.

General Purpose The purpose of this study was to assess the quality and availability of in situ cancer data and explore the use of these data for surveillance research.

Purpose #3 We compared VIN III (vulva intra-epithelial neoplasia), VAIN III (vagina intra-epithelial neoplasia), and AIN III (anus intra-epithelial neoplasia) cases by state and national program. ACOS/COC cases of ceased reportability to hospital registries 01/96. May affect completeness when they are reportable to the central cancer registry.

Method Tables for all sites combined include leukemias and lymphomas but are not listed separately due to the non-existence of in situ tumors.

Method Rates for all sites combined for both invasive and in situ rates (and female genital system) do not include them. Rates and counts were suppressed when the category had fewer than 25 cases.

Caveat #1 Since cervical cancer in situ was not a reportable disease for most of the study years, 1995-2005, they were omitted from all analyses. Rates for all sites combined for both invasive and in situ rates (and female genital system) did not include them.

Caveat #2 Canadian data had to be excluded due to variation by province, year, & site of in situ tumors in the dataset and the overall proportional volume of in situ tumors was vastly different from reports from the US

Conclusion 3 In situ rates were lower in non-white populations; children, young adults, and the elderly: possibly related to specific cancer types occurring in these groups. That is, the cancer types most common in these categories are not the cancers that can occur (e.g., leukemia in children) or do occur (e.g., prostate cancer) in an in situ stage.

Conclusion 4 Differences were found between the two U.S. surveillance programs, perhaps attributable to: data quality issues (e.g., the rates of prostate cancer in situ or large intestine NOS), more thorough case ascertainment (melanoma), or in differences in the underlying risks and cancer profiles in populations in the two programs.