CANCER IN TASMANIA INCIDENCE AND MORTALITY 1999

CANCER IN TASMANIA INCIDENCE AND MORTALITY 1999

CANCER IN TASMANIA INCIDENCE AND MORTALITY 1999 Menzies Centre for Population Health Research University of Tasmania Tasmanian Cancer Registry 17 Liverpool Street Hobart Tasmania Australia 7000 Postal address: GPO Box 252-23 Hobart Tasmania Australia 7001 Telephone (03) 6226 7714 Facsimile (03) 6226 7704 URL: www.menzies.utas.edu.au/cancer/cancer.htm Email: tcr@menzies.utas.edu.au Editors: Pavlides S, Venn A, Blizzard L, Dwyer T. Publication date: July 2002

Acknowledgments The Tasmanian Cancer Registry is funded by the Tasmanian Department of Health and Human Services (DHHS), through its Health Advancement Program, and by the Menzies Centre. Additional funds are raised from the community and research funding bodies. This report has been made possible through the collaboration of various people and organisations within Tasmania and across Australia. The Registry s work would not be possible without the assistance of the staff of the State s pathology laboratories, hospital medical records departments, the WP Holman Clinics, the office of the Registrar of Births, Deaths and Marriages, the medical community, the Coroner s Office, the Australian Bureau of Statistics and the interstate cancer registries; their support is greatly appreciated. The adminstrative staff and volunteers of the Registry are commended for their commitment and efforts towards achieving accurate and complete data upon which this report is based. In addition, the voluntary assistance provided by the Advisory Committee and the Data Release Committee is greatly appreciated by the Registry. We thank other Menzies Centre staff for their assistance with statistical, computing, administrative, financial, media and editorial matters. Citation The following citation is suggested in referring to this report: The Tasmanian Cancer Registry, Menzies Centre for Population Health Research 2002. Cancer in Tasmania: Incidence and Mortality 1999. Hobart: Menzies Centre for Population Health Research, University of Tasmania 2

Contents The Tasmanian Cancer Registry..................................................... 4 Introduction........................................................... 4 Sources of data........................................................ 4 Data handling.......................................................... 4 Data collection and coding practices.......................................... 4 Data control and quality assurance........................................... 4 Publication of reports.................................................... 5 All Cancers................................................................... 6 All cancers combined, incidence and mortality, 1999.............................. 6 All cancers combined, time trends, 1978 1999................................. 7 Common Cancers............................................................... 8 Common cancers diagnosed in males, 1999.................................... 8 Common cancer-related deaths in males, 1999.................................. 8 Common cancers diagnosed in females, 1999................................... 9 Common cancer-related deaths in females, 1999................................. 9 Regional Distribution of Cancers.................................................... 10 Female Breast Cancer 1997 1999................................................. 11 Tumour size........................................................... 11 Lymph node involvement.................................................. 11 Cancer Incidence and Mortality Table, 1999............................................ 13 Appendices................................................................... 35 Appendix A: Cancer codes and specific coding practices......................... 36 Appendix B: Statistical methods and calculations.............................. 38 Appendix C: Population data............................................. 39 Appendix D: Indices of data quality........................................ 40 Appendix E: Use of cancer registry data..................................... 42 Appendix F: Cancer registry staff, volunteers and committee members............... 43 Appendix G: Incidence summary and mortality summary, 1999..................... 44 3

The Tasmanian Cancer Registry Introduction The Tasmanian Cancer Registry was established in 1977 as a population-based registry covering the State. The Registry was set up for the purpose of providing the State Government with accurate cancer incidence and mortality statistics and to provide the capacity to monitor cancer trends. In July 1988 the responsibility for the operation of the Cancer Registry was transferred from the Department of Health Services to the Menzies Centre for Population Health Research, University of Tasmania. Cancers were proclaimed as notifiable diseases in December 1992 and cancer registration since then has had a legislative basis. The Registry is assisted by an Advisory Committee and a Data Release Committee. The Registry staff currently comprises a Director, Registrar, Administrative Assistant, Medical Coder and a Clerical Assistant. Volunteers also assist with the paper data handling. The Registry has access to biostatisticians and a database administrator. The Tasmanian Cancer Registry is a full member of the Australasian Association of Cancer Registries (AACR) and the International Association of Cancer Registries (IACR). Sources of data All pathology laboratories in the State provide the Registry with copies of histopathology, cytology and cell marker reports of cancer. Notification of cancer forms are supplied by the two radiation oncology clinics. Private and public hospitals notify diagnoses of cancer to the Registry upon discharge of patients or provide a computerised listing of cancer cases periodically. Death certificates of Tasmanian people are reviewed for mention of cancer as a cause of death. Since 1994 breast and cervical cancer screening programs have been undertaken in Tasmania and listings from these sources are available to check against Registry records. Interstate registries supply data to the Tasmanian Cancer Registry on Tasmanian residents who seek treatment interstate or who move interstate at some time after cancer diagnosis. Data handling Paper copies of all data are retained. Paper records for persons deceased are archived two years after death. Data are entered into software provided by the South Australian Cancer Registry. Only one tumour per ICD-9 site can be recorded. The Tasmanian Cancer Registry collects and stores all pathology reports of non-melanoma skin cancers (NMSC) but these are not routinely entered onto the database. Incidence is not regularly reported due to resource considerations. Deaths from NMSC are reported annually. Data collection and coding practices Data collected by the Registry include demographic and clinical data for the cancer patient. Additional tumour data are collected for melanoma, lymphomas, unknown primaries, breast and bladder cancers. The Tasmanian Cancer Registry records multiple primary cancers in the same person, of which only some are counted for incidence purposes according to the rules of the International Agency for Research on Cancer (IARC) and IACR. The primary site of cancer is coded according to the International Classification of Diseases, ninth edition (ICD-9) and morphology according to the International Classification of Diseases for Oncology, second edition (ICD-O-2). Coding practices specific to the Tasmanian Cancer Registry are detailed in Appendix A. Data control and quality assurance The quality of information provided by the Registry depends on the quality of data received as well as the processing of data by the Registry. The indices used to measure the quality of the 1999 data are provided in Appendix D. The accuracy of data entry at the Tasmanian Cancer Registry is monitored by a case flagging system that is used to identify data that are entered in error. Data matching programs enable the identification and amendment of duplicate entries by identifying incorrect spellings, name changes upon marriage and 4

date of birth inconsistencies. In addition, the National Cancer Statistics Clearing House (NCSCH) collates all State and Territory data and checks for duplicate registrations across two or more States. To help achieve high data quality and case ascertainment, data are obtained from multiple sources such as pathology laboratories, hospitals and the Registrar of Births, Deaths and Marriages. Most registered cases include data from both a pathology laboratory and a hospital service (inpatient or radiation oncology clinic). Where insufficient information is received to enable complete registration, active follow-up is undertaken by contacting treating doctors and hospital medical records departments. Publication of reports The incidence and mortality data in this report are based on cancer registrations for 1999, and for 1978 1999 in trend analysis, completed by 7 June 2002. Despite intensive efforts to ensure the completeness of incidence data, the database is continually updated by previously unregistered cases and new information for registered cases. This improves the quality of data but future publications and responses to requests for data will reflect any subsequent revisions to the data and may not exactly correspond to the figures in this report. Notifications of cancer are received and dealt with in a timely manner at the Tasmanian Cancer Registry. On average, the Registry receives cancer notifications once or twice a week from pathology laboratories, quarterly and ad hoc from hospitals, and monthly from the Registrar of Births, Deaths and Marriages. The cases are registered within two months of notification and cases that are incomplete are followed up over the next 18 months. 5

All Cancers All cancers combined, incidence and mortality, 1999 There were 2,235 new cases of cancer (excluding non-melanocytic skin cancers) diagnosed among Tasmanian residents during 1999 (1,203 males and 1,032 females). The overall age standardised incidence 1 was 344 per 100,000 in males and 278 per 100,000 in females. The risk of developing any cancer by the age of 75 years was approximately 1 in 3. This risk estimate does not include the risk of developing non-melanocytic skin cancer. Cancer incidence generally increased with age (Figure 1). Male rates exceeded female rates for Tasmanians aged 60 years or over. Prostate cancer and lung cancer were responsible for the greater male cancer incidence at these ages. Breast cancer accounted for the slightly higher female rates among younger adults. Figure 1: Age-specific incidence and mortality for all cancers (excluding non-melanocytic skin cancers), 1999 4000 3500 Male Incidence Female Incidence Male Mortality Female Mortality 3000 Age specific rates per 100,000 2500 2000 1500 1000 500 0 0 4 5 9 10 14 15 19 20 24 25 29 30 34 35 39 40 44 45 49 50 54 55 59 60 64 65 69 70 74 75 79 80 84 85+ Age (years) 1 Age standardised rates were calculated using the World Standard Population. 6

There were 995 (550 males and 445 females) cancer related deaths among Tasmanian residents in 1999. Nine deaths were due to non-melanocytic skin cancer. The overall age standardised mortality was 149 per 100,000 for males and 104 per 100,000 for females. The risk of dying of cancer by age 75 years was 1 in 6 for males and 1 in 9 for females. All cancers combined, time trends, 1978 1999 The age standardised incidence of all cancers combined (excluding non-melanocytic skin cancers) increased by more than 30% during the 22-year period 1978 1999 (comparing 1998 1999 with 1978 1979, the increase was 33.7% for males and 37.4% for females). Some of the largest increases were observed for prostate cancer in men and breast cancer in women. Those increases in incidence coincided with the greater use of PSA testing for prostate cancer in men and the introduction of mammography screening for breast cancer in women. Whilst incidence has been increasing, mortality rates have declined marginally. As can be seen from Figure 2, the difference between incidence and death rates has widened in consequence. Figure 2: Trends in age standardised incidence and mortality of all cancers (excluding non-melanocytic skin cancers), 1978 1999 500 450 400 Male Incidence Female Incidence Male Mortality Female Mortality 350 300 250 200 150 100 50 0 1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 Age standardised rates per 100,000 Year 7

Common Cancers The five most common cancers (other than non-melanocytic skin cancer) diagnosed in 1999 accounted for 63% of all cancers in males and 59% of all cancers in females. Cancers of unknown primary site accounted for 3.8% of all cancers for males and 5.1% of all cancers for females. Common cancers diagnosed in males, 1999 The most common cancer in males was prostate cancer (23%), followed by colorectal cancer (15%), lung cancer (12%), melanoma skin cancer (7%) and bladder cancer (6%). While the number of prostate cancer cases was much greater than any other cancer, prostate cancer numbers have continued to decline since the peak in 1994 when 420 new prostate cancer cases were reported. Figure 3: Common cancers, 1999: males Prostate 276 Colorectal 180 Lung 143 Melanoma 87 Bladder 71 0 50 100 150 200 250 300 Number of new cancer cases Common cancer-related deaths in males, 1999 Lung cancer accounted for 24% of all cancer-related deaths in male Tasmanian residents in 1999, followed by colorectal cancer (14%) and prostate cancer (13%). The next most common causes of cancer deaths were lymphomas (5%) and stomach cancer (4%). Figure 4: Common causes of cancer-related deaths, 1999: males Lung 130 Colorectal 78 Prostate 71 All Lymphomas 28 Stomach 24 0 50 100 150 200 250 300 Number of new cancer cases 8

Common cancers diagnosed in females, 1999 The most common cancer in females was breast cancer, accounting for 24% of all cancers in females, followed by colorectal cancer (14%), melanoma skin cancer (10%), lung cancer (7%) and lymphomas (5%). Figure 5: Common cancers, 1999: females Breast 244 Colorectal 146 Melanoma 103 Lung 70 All Lymphomas 49 0 50 100 150 200 250 300 Number of new cancer cases Common cancer-related deaths in females, 1999 The most common causes of cancer-related deaths in female Tasmanian residents in 1999 were breast cancer (20%), colorectal cancer (17%), lung cancer (12%), pancreatic cancer (6%), ovarian cancer (4%) and lymphomas (4%). Figure 6: Common causes of cancer related deaths, 1999: females Breast 87 Colorectal 74 Lung 52 Pancreas 26 Ovary All Lymphomas 19 19 0 50 100 150 200 250 300 Number of new cancer cases 9

Regional Distribution of Cancers The regional distribution for each cancer site is shown as the number of cases and the percentage of cases for each cancer site in each statistical division (Table 1). This information is based on recorded postcode of residence. On the basis of population numbers in each of the statistical divisions, the distribution of cancers would be expected to be 49% in the south, 28% in the north and 23% in the Mersey-Lyell division. Variation around that distribution can be expected due to chance occurrences and differences in the age distribution between the regional populations. Table 1: Regional distribution of cancer incidence for all sites with a minimum of 50 new cases, 1999 ICD-9 Site Southern Northern Mersey-Lyell Total 229,119 (49%) 133,169 (28%) 108,515 (23%) 470,803* (100%) 153-4 Colorectal 152 (47%) 91 (28%) 83 (25%) 326 185 Prostate 133 (48%) 77 (28%) 66 (24%) 276 174-5 Breast 118 (48%) 69 (28%) 59 (24%) 246 162 Lung 103 (48%) 57 (27%) 53 (25%) 213 172 Melanoma 108 (57%) 42 (22%) 40 (21%) 190 200-2 All lymphomas 47 (44%) 23 (21%) 37 (35%) 107 188 Bladder 47 (46%) 34 (33%) 21 (21%) 102 199 Unspecified site 45 (48%) 31 (33%) 18 (19%) 94 189 Kidney 39 (56%) 21 (30%) 10 (14%) 70 140-208 Total new cases 1,120 (50%) 604 (27%) 511 (23%) 2,235 * Estimated Resident Population at June 1999 (ABS) 10

Female Breast Cancer 1997 1999 Breast cancer tumour size and lymph node involvement were first recorded by the Tasmanian Cancer Registry in 1997 when funding was provided to all Australian cancer registries for this purpose. Tumour size In 1999, 97% of the 244 primary breast cancer cases (female) were histologically examined. Information about tumour size was available for 224 (92%) of these cases. For these tumours, 45 (20%) were less than 10mm in diameter, 95 (42%) were between 10 and 19mm, 68 (30%) were between 20 and 49mm, and 16 (7%) were greater than 50mm in diameter. Figure 7 compares categories of tumour size from 1997 to 1999. Figure 7: Breast cancer, 1997 1999: size of histologically-confirmed tumours Percentage of cases 50 45 40 35 30 25 20 15 10 5 0 1997 1998 1999 1 9 mm 10 19 mm 20 49 mm 50+ mm Tumour size Lymph node involvement Of the 224 tumours that were histologically examined and measured in 1999, lymph nodes were investigated in 163 (73%) of cases. Where nodal status was examined, 104 (64%) cases were classified as lymph node negative. Figure 8 compares categories of lymph node involvement from 1997 to 1999. Figure 8: Breast cancer, 1997 1999: lymph node involvement Percentage of cases 70 60 50 40 30 20 10 0 1997 1998 1999 0 nodes 1 3 nodes 4 6 nodes 7+ nodes Number of nodes involved 11

12

CANCER INCIDENCE AND MORTALITY TABLE 1999 Numbers of new cases and deaths Age-specific incidence and mortality rates per 100,000 Crude incidence and mortality rates per 100,000 (Crude Rate) Cumulative incidence and mortality rates (Cumul Rate) Age standardised incidence and mortality rates using the world standard population (AS Rate) 13

14

15

16

17

18

19

20

21

22

23

24

25

26

27

28

29

30

31

32

33

34

APPENDICES Appendix A: Appendix B: Appendix C: Appendix D: Appendix E: Appendix F: Cancer codes and specific coding practices Statistical methods and calculations Population data Indices of data quality Use of cancer registry data Cancer registry staff, volunteers and committee members Appendix G: Incidence summary and mortality summary, 1999 35

Appendix A: CANCER CODES (ICD-9) AND SPECIFIC CODING PRACTICES Buccal Cavity and Pharynx: 140 149 140. Lip 141. Tongue 142. Salivary Gland 143. Gum 144. Floor of Mouth 145. Other and Unspecified Parts of the Mouth 146. Oropharynx 147. Nasopharynx 148. Hypopharynx 149. Other and Ill-defined Sites within the Lip, Oral Cavity and Pharynx Genito-Urinary Organs: 180 189 180. Cervix Uteri (invasive) 181. Placenta 182. Body of Uterus 183. Ovary and other Uterine Adnexa 184. Other and Unspecified Female Genital Organs 185. Prostate 186. Testis 187. Penis and Other Male Genital Organs 188. Bladder 189. Kidney and Other and Unspecified Urinary Organs Digestive Organs and Peritoneum: 150 159 150. Oesophagus 151. Stomach 152. Small Intestine 153. Colon 154. Rectum, Rectosigmoid Junction and Anal Canal 155. Liver and Intrahepatic Bile Ducts specified as Primary 156. Gall Bladder and Extrahepatic Bile Ducts 157. Pancreas 158. Peritoneum and Retroperitoneal Tissue 159. Unspecified Digestive Organs Respiratory System: 160 164 160. Nasal Cavities, Middle Ear and Accessory Sinuses 161. Larynx 162. Trachea, Bronchus and Lung 163. Pleura 164. Thymus, Heart and Mediastinum Bone, Connective Tissue, Skin and Breast: 170 175 Other and Unspecified Sites: 190 199 190. Eye 191. Brain 192. Cranial Nerves, Spinal Cord, Meninges and Other Unspecified Parts 193. Thyroid Gland 194. Other Endocrine Glands 195. Other and Ill-defined Sites 199. Unspecified Site Lymphatic and Hematopoietic Tissue: 200 208 200. Diffuse Non-Hodgkin s Lymphoma 201. Hodgkin s Disease 202. Other Lymphomas 203. Multiple Myeloma and Immunoproliferative Neoplasms 204. Lymphoid Leukaemia 205. Myeloid Leukaemia 206. Monocytic Leukaemia 207. Erythroleukaemias and Other Specified Leukaemias 208. Unspecified Cell Leukaemias 170. Bone and Articular Cartilage 171. Connective and Other Soft Tissue 172. Skin Malignant Melanoma 173. Skin other than Melanoma 174. Female Breast 175. Male Breast 36

Comments on the use of ICD-9 code in this report 140. Lip: applies to squamous cell carcinomas arising from the mucosa, muco-epidermal junction or vermillion border. 152. Small intestine: includes sarcomas and carcinomas but lymphomas are coded to 200 or 202. 155. Liver: only those tumours proved by histological examination or special tests are included; others regarded as metastatic. 158. Peritoneum and Retroperitoneal tissue: on the advice of an authority on soft tissue tumours, primaries are being coded to 171. 162. Bronchus and Lung: includes only tumours considered to be primary. 171. Bone: includes only primary bone tumours. 172. Cutaneous Melanoma: invasive lesions only included. 173. Non-Melanoma Skin: only mortality rates are shown in this report. 180. Cervix Uteri: includes microinvasive lesions but not in-situ cancers. 188. Bladder: includes invasive tumours only. 196-199. Secondary Sites: all coded under 199 if primary site unknown. 200. Lymphosarcoma and Reticulosarcoma: only diffuse non-hodgkin s lymphomas are included under this code number. 204-208. Leukaemias: certain changes have been made to 2060, 2070 and 2072 to incorporate them in the Acute Myeloid (AML) 2050 FAB Classification (M1-M7). Please note that none of the 3 digit ICD-9 codes have been changed (140 208). However, it must be pointed out that some of the 4-digit codes of ICD-9 have been expanded or condensed to concur with changes in pathology classifications and where numbers warrant this practice. As the International Agency for Research in Cancer (IARC) scientific publication Cancer in Five Continents is based on 3-digit codes, this modification does not affect international comparisons. 37

Appendix B: STATISTICAL METHODS AND CALCULATIONS The 1999 report contains numbers of new cases and deaths, and age specific, crude, cumulative, and age standardised incidence and mortality rates of Tasmanian residents diagnosed with cancer. They are based on registrations completed by 7 June 2002. Incidence Cancer incidence is defined as the number of new cases of cancer in a population during a specific period. The incidence data in this report relate to the number of primary cancers first diagnosed between January 1999 and December 1999 in persons who were residents of Tasmania at the time of diagnosis. Mortality The mortality data in this report relate to deaths from cancer, of people who were first diagnosed as having cancer while they were residents of Tasmania. In many instances, Tasmanian cancer patients who die elsewhere are notified to the Tasmanian cancer registry by other State or Territory cancer registries. Details of patients diagnosed interstate who die in Tasmania are forwarded to the relevant cancer registry. Deaths from other causes are also recorded so that survival rates can be calculated. Crude rates (CR) Age specific rates Age specific rates are calculated by dividing the number of cases occurring in each specified age group by the corresponding population in the same age group and are expressed as an annual rate per 100,000 population. Age standardised rates (ASR) Rates are adjusted for age to facilitate comparisons between populations that have different age structures, eg between youthful and aging communities. In this publication we use direct standardisation in which age specific rates are used to calculate the number of cases that would have occurred if the population had the same age distribution as the World Standard Population. This effectively removes the influence of age structure on the summary rate, which is described as the age standardised rate. The method may be used for both incidence and mortality calculations. Cumulative rates The cumulative rate is a directly standardised rate calculated by summing the age specific rate for each year of life prior to age 75. Cumulative risk to age 75 can be calculated from the cumulative rate. The crude incidence (rate) is calculated as the number of new cases of cancer divided by the population at risk in a specified time period. The crude mortality rate substitutes deaths for new cases in this calculation. Both are conventionally expressed as annual rates per 100,000 population. They are referred to as crude rates because there is no adjustment for age. The estimated Tasmanian population by age and sex for 1999 was supplied by the Australian Bureau of Statistics (ABS), Cat No. 3311.6. 38

Appendix C: POPULATION DATA Table 2: Estimated Resident Population of Tasmania by Age Group as at 30 June 1999 1 Age Group Males Females Persons 0 4 16,209 15,373 31,582 5 9 17,560 16,591 34,151 10 14 17,700 17,091 34,791 15 19 17,566 16,951 34,517 20 24 15,163 14,750 29,913 25 29 15,420 16,005 31,425 30 34 15,294 16,123 31,417 35 39 17,862 18,625 36,487 40 44 17,628 17,940 35,568 45 49 16,720 16,750 33,470 50 54 15,281 15,085 30,366 55 59 12,093 11,878 23,971 60 64 10,001 10,136 20,137 65 69 9,027 9,450 18,477 70 74 7,785 8,771 16,556 75 79 5,636 7,774 13,410 80 84 3,092 5,104 8,196 85+ 1,939 4,430 6,369 All ages 231,976 238,827 470,803 Table 3: Age Distribution of World Standard Population 2 Age Group World 0 4 12,000 5 9 10,000 10 14 9,000 15 19 9,000 20 24 8,000 25 29 8,000 30 34 6,000 35 39 6,000 40 44 6,000 45 49 6,000 50 54 5,000 55 59 4,000 60 64 4,000 65 69 3,000 70 74 2,000 75 79 1,000 80 84 500 85+ 500 All ages 100,000 The standard world population 3 approximates the proportional age distribution of the whole world. It is used widely for direct standardisation to enable comparisons between populations of differing age structure. 1 Demography: Tasmania 1999. Australian Bureau of Statistics 2000, p15. 2 Parkin D M, Whelan S, Ferlay J, Raymond L and Young J. Cancer Incidence in Five Continents Vol VII. IARC Scientific Publication No 143. Lyon: International Agency for Research on Cancer, 1997 (p 67). 3 Doll R, Payne P, Waterhouse J (eds). Cancer Incidence in Five Continents. A Technical Report. Berlin: Springer-Verlag (for UICC), 1966. 39

Appendix D: INDICES OF DATA QUALITY Indices of data quality Three indices of data quality are commonly used by Australian Cancer Registries: the mortality to incidence ratio (M/I%), histological verification percentage (HV%) and death certificate only (DCO). The Tasmanian Cancer Registry has calculated two of these indices (M/I% and HV%) and also determined morphological verification (MV%) and primary site unknown (PSU). The number of DCO cases 1 has not been formally calculated, as the Registry does not register cases on the basis of death certificate only. Each death certificate notification is actively followed up until the time and place of diagnosis are ascertained and the diagnosis verified. If the diagnostic details cannot be confirmed, the case is not registered. In 1999, approximately ten (0.5%) DCOs were unable to be verified and therefore were not registered. One way of assessing the completeness of cancer ascertainment is the M/I%. This measure is calculated by dividing the number of deaths attributed to a specific cancer in a defined population by the number of new cases of the same cancer registered during the same period in the same population. For cancers with a poor prognosis, the ratio will be close to 100%. If it exceeds 100% this may indicate that the cancer is being under-registered, but a more likely explanation for this result with uncommon cancers is that it is a result of random fluctuations in the annual number of new cases and deaths. HV% is an indicator of the quality of the data because it is the percentage of cases with histological verification. Histological verification of diagnosis shows that it has been possible to investigate a patient with such thoroughness that a portion of the suspected neoplasm has been removed for microscopic examination. 2 For 1999, 87% of all female and 85% of all male registered cases had a diagnosis on the basis of tissue examination. HV% included only the cancers that were diagnosed following tissue or needle biopsy and did not include diagnoses made on the basis of cytology examination of smears or aspirates (including haematological examinations). If we include all diagnoses based on exfoliative cytology and haematological examinations (for leukaemia) as well as diagnoses based on histological examination of a tissue specimen, then the percentage of all cancers with morphological verification 3 (MV%) in 1999 was 93%. The list below shows the number and percentage of cancer cases diagnosed by the various examination techniques in 1999. Some cases were diagnosed by more than one technique, and hence the total number of examinations exceeds the number of cases registered. Examination Technique Number Percent Histology 1,922 86 Radiology 221 10 Cytology 195 9 Imaging 1 0 Haematology 40 2 Clinical 199 9 Other 21 1 The Registry calculated the percentage of all cancers that were classified as primary site unknown (PSU), because it is one of the quality indicators used for international comparisons. 4 PSU includes other and illdefined sites within the digestive organs and peritoneum, other and ill-defined sites within the respiratory system and intrathoracic organs and primary site unknown. In 1999, the percentage of all cases classified as PSU was 3.8% for males and 5.1% for females. 1 Those cases for which no other information than a death certificate mentioning cancer can be obtained. 2 Parkin D.M, Chen V.W, Ferlay J, Galceran J, Storm H.H and Whelan S. Comparability and Quality Control in Cancer Registration. IARC Technical Report No 19. Lyon: International Agency for Research on Cancer, 1994 (p 43). 3 Parkin D.M, Whelan S, Ferlay J, Raymond L and Young J. Cancer Incidence in Five Continents Vol VII. IARC Scientific Publication No 143. Lyon: International Agency for Research on Cancer, 1997 (p 50). 4 Parkin D.M, Chen V.W, Ferlay J, Galceran J, Storm H.H and Whelan S. Comparability and Quality Control in Cancer Registration. IARC Technical Report No 19. Lyon: International Agency for Research on Cancer, 1994 (p 51). 40

Table 4: Indices of Data Quality ICD-9 Site Incidence Mortality M/I% HV% MV% Males 140 Lip 24 1 4 100 100 141-9. Head & Neck 34 9 26 100 100 150 Oesophagus 29 19 66 93 100 151 Stomach 34 24 71 100 100 153 Colon 106 49 46 96 97 154 Rectal 74 29 39 95 95 155 Liver 13 7 54 38 54 156 Gall Bladder 9 7 78 56 56 157 Pancreas 26 22 85 35 54 162 Lung 143 130 91 57 81 172 Melanoma of Skin 87 14 16 100 100 185 Prostate 276 71 26 92 98 186 Testis 16 1 6 100 100 188 Bladder 71 20 28 93 99 189 Kidney 45 19 42 91 93 191 Brain 16 10 63 88 88 193 Thyroid 8 2 25 100 100 199 Unspecified Site 44 37 84 43 64 200-2. All Lymphomas 59 28 48 97 100 203 Multiple Myeloma 16 11 69 81 94 204-8. All Leukaemias 24 16 67 63 100 140-208 All Cancers 1,203 545 45 85 93 Females 140 Lip 13 1 8 100 100 419 Head & Neck 16 10 63 94 100 150 Oesophagus 17 8 47 94 94 151 Stomach 15 8 53 93 93 153 Colon 99 45 45 92 94 154 Rectal 47 29 62 94 96 155 Liver 2 4 200 50 100 156 Gall Bladder 19 13 68 53 68 157 Pancreas 21 26 124 38 43 162 Lung 70 52 74 57 89 172 Melanoma of Skin 103 8 8 100 100 174-5. Breast 244 87 36 97 99 180 Cervix 17 8 47 100 100 182 Uterus 28 5 18 93 96 183 Ovary 30 19 63 77 87 184 Vagina 14 0 0 86 93 188 Bladder 31 7 23 100 100 189 Kidney 25 7 28 84 84 191 Brain 14 12 86 93 93 193 Thyroid 28 1 4 100 100 199 Unspecified Site 50 43 86 46 70 200-2. All Lymphomas 50 19 38 92 98 203 Multiple Myeloma 17 9 53 82 88 204-8. All Leukaemias 26 11 42 54 100 390 All Cancers 1,032 441 43 87 93 Note non-melanocytic skin cancers are not included in this table. 41

Appendix E: USE OF CANCER REGISTRY DATA Confidentiality of information Confidentiality of data is a requirement of the Public Health Act 1997. The Registry cannot release data identifying an individual unless authorised by the Director of Public Health. The relevant sections of this Act are described below. Disclosure of information relating to a notifiable disease Section 61: A person, unless authorised to do so under section 147, must not disclose any information in relation to: (a) Any notification relating to a notifiable disease; or (b) Any investigation or inquiry into a notifiable disease; or (c) The identity of any person to whom any notification, investigation or inquiry relates. Disclosure of information Section 147: A person must not disclose any information obtained for the purpose of this Act relating to a person except in accordance with any relevant guidelines and: (a) With the written consent of the person or parent or guardian of a child or person to whom the information relates; or (b) To a registered medical practitioner who is directly involved in the treatment of that person; or (c) To a person apparently in charge of any institution or facility which is involved in the diagnosis or treatment of that person; or (d) To a person authorised by the Director; or (e) For the purpose of notifying a notifiable disease; or (f) For the purpose of an epidemiological study or research authorised by the Director; or (g) For the purpose of legal proceedings arising out of this Act; or (h) For a purpose authorised or required by this Act or another Act; or (i) For the purposes of study or research approved by the Director. Requests for non-identifying data Non-identifying cancer data are available upon request. Data are usually released as incidence or mortality rates, or number of cases or deaths, for specific cancers, cancer morphologies, time periods or age groups. Data that can be compiled using existing reporting systems have a turnaround of approximately 48 hours. Data needing input from the biostatistician require more notice. Such data are provided to epidemiological and clinical researchers, the Department of Health and Human Services, students and the public. In addition to data requests, the Registry receives personal enquiries regarding cancer. When appropriate, these enquiries are referred to other agencies or health professionals. Requests for identifying data The release of named data is strictly controlled. Named data may be released only after approval of a formal application submitted to the Data Release Committee of the Tasmanian Cancer Registry and with subsequent approval by the Director of Public Health. Applications for research purposes need the approval of the researchers institutional ethics committee. Applicants are required to send a covering letter with the study protocol and copies of approvals from the ethics committees to the Director of the Tasmanian Cancer Registry. Published data Annual reports from the Registry provide data on cancer numbers and incidence and mortality. Additional information is provided on selected cancer sites. It should be recognised that active follow-up is necessary to complete registrations for 20% of cases each year, which results in a two-year interval from year of diagnosis to date of publication of incidence data. Considerable time is spent on matching, classifying and validating cancer cases notified to the Registry. In addition the Tasmanian Cancer Registry supplies data to the National Cancer Statistics Clearing House (NCSCH) and to the International Association of Cancer Registries (IACR). 42

Appendix F: CANCER REGISTRY STAFF, VOLUNTEERS AND COMMITTEE MEMBERS Cancer Registry Staff and Volunteers, 2001 Professor T Dwyer Medical Director (to April 2001) Dr A Venn Acting Director (September 2000 February 2001) Director (from April 2001) Mrs S Pavlides Database Manager (November 2000 February 2001) Registrar (from March 2001) Mrs V Webb Mrs K Jackman Mrs S Browne Mrs P Whelan Mrs J Clifford Mrs A Button Dr L Blizzard Miss J Fryer Mrs D Shugg Mrs P Vallance Administrative Officer Administrative Officer Clerical Assistant Volunteer Volunteer Volunteer Biostatistician, Menzies Centre Biostatistician, Menzies Centre Honorary Research Associate Librarian Members of the Advisory Committee, 2001 Dr A Venn Mrs S Pavlides Dr M Jacobs Ms V Gardner Professor P Stanton Dr R Young Mrs M Ramsden Menzies Centre for Population Health Research Tasmanian Cancer Registry Department of Health and Human Services Department of Health and Human Services School of Medicine, Department of Surgery School of Medicine, Department of Clinical Sciences Cancer Council of Tasmania Members of the Data Release Committee, 2001 Dr R Kimber Dr M Baikie Dr S Gauden Dr R Kelsall Royal Hobart Hospital Royal Hobart Hospital (retired) WP Holman Clinic Forensic Pathology 43

Appendix G: INCIDENCE SUMMARY, 1999 Table 5: Incidence Summary, 1999 ICD-9 SITE MALES FEMALES TOTAL *N CR ASR N CR ASR N 140 Lip 24 10.3 7.0 13 5.4 3.2 37 141 Tongue 10 4.3 3.7 5 2.1 1.7 15 142 Salivary Gland 1 0.4 0.3 0 0 0.0 1 143 Gum 1 0.4 0.3 0 0 0.0 1 144 Floor of Mouth 7 3 2.3 1 0.4 0.4 8 145 Other Mouth 4 1.7 1.3 5 2.1 1.0 9 146 Oropharynx 7 3 2.2 2 0.8 0.6 9 147 Nasopharynx 2 0.9 0.7 0 0 0.0 2 148 Hypopharynx 2 0.9 0.5 1 0.4 0.3 3 149 Other Pharynx 0 0 0.0 2 0.8 0.8 2 150 Oesophagus 29 12.5 8.6 17 7.1 3.9 46 151 Stomach 34 14.7 8.7 15 6.3 2.5 49 152 Small Intestine 3 1.3 0.8 6 2.5 2.0 9 153 Colon 106 45.7 30.1 99 41.5 22.0 205 154 Rectum 74 31.9 21.9 47 19.7 12.2 121 155 Liver 13 5.6 4.3 2 0.8 1.1 15 156 Gall Bladder 9 3.9 2.2 19 8 3.4 28 157 Pancreas 26 11.2 6.8 21 8.8 3.5 47 160 Nasal Cavities 2 0.9 0.5 2 0.8 0.7 4 161 Larynx 16 6.9 5.0 3 1.3 1.1 19 162 Lung 143 61.6 38.8 70 29.3 17.2 213 163 Pleura 3 1.3 0.7 0 0 0.0 3 164 Thymus 1 0.4 0.3 1 0.4 0.2 2 170 Bone 1 0.4 0.3 3 1.3 0.8 4 171 Soft Tissues 16 6.9 5.4 16 6.7 4.6 32 172 Melanoma of Skin 87 37.5 28.6 103 43.1 31.7 190 173 Skin Incidence of non-melanocytic skin cancer is not recorded 174-5 Breast 2 0.9 0.7 244 102.2 72.1 246 180 Cervix Uteri 0 0 0.0 17 7.1 5.8 17 181 Placenta 0 0 0.0 0 0 0.0 0 182 Corpus Uteri 0 0 0.0 28 11.7 6.7 28 183 Ovary 0 0 0.0 30 12.6 8.2 30 184 Vagina 0 0 0.0 3 1.3 0.5 3 184.1 Vulva 0 0 0.0 11 4.6 1.9 11 185 Prostate 276 119 70.8 0 0 0.0 276 186 Testis 16 6.9 5.5 0 0 0.0 16 187 Penis 0 0 0.0 0 0 0.0 0 188 Bladder 71 30.6 19.5 31 13 7.3 102 189 Kidney 45 19.4 13.0 25 10.5 6.7 70 190 Eye 4 1.7 1.3 2 0.8 0.4 6 191 Brain 16 6.9 5.1 14 5.9 5.4 30 192 Other CNS 1 0.4 0.5 1 0.4 0.2 2 193 Thyroid 8 3.4 2.6 28 11.7 9.5 36 194 Other Endocrine 0 0 0.0 2 0.8 1.1 2 199 Unspecified Site 44 19 11.9 50 20.9 12.3 94 200-2 All Lymphomas 58 25 18.3 49 20.5 13.3 107 202.3-6 Histiocytic Tissue 1 0.4 0.7 1 0.4 0.3 2 203 Multiple Myeloma 16 6.9 4.5 17 7.1 3.4 33 204-8 All Leukaemias 24 10.3 8.2 26 10.9 8.1 50 140-208 Total New Cases 1203 518.6 344.2 1032 432.1 278.3 2235 * N = Number CR = Crude Rate ASR = Age Standardised Rate 44

MORTALITY SUMMARY, 1999 Table 6: Mortality Summary, 1999 ICD-9 SITE MALES FEMALES TOTAL *N CR ASR N CR ASR N 140 Lip 1 0.4 0.4 1 0.4 0.1 2 141 Tongue 0 0 0.0 2 0.8 0.6 2 142 Salivary Gland 2 0.9 0.7 2 0.8 0.4 4 143 Gum 0 0 0.0 0 0 0.0 0 144 Floor of Mouth 1 0.4 0.3 1 0.4 0.2 2 145 Other Mouth 1 0.4 0.4 2 0.8 0.2 3 146 Oropharynx 2 0.9 0.4 0 0 0.0 2 147 Nasopharynx 1 0.4 0.7 0 0 0.0 1 148 Hypopharynx 2 0.9 0.7 2 0.8 0.5 4 149 Other Pharynx 0 0 0.0 1 0.4 0.3 1 150 Oesophagus 19 8.2 5.2 8 3.3 1.6 27 151 Stomach 24 10.3 6.1 8 3.3 1.0 32 152 Small Intestine 4 1.7 1.2 2 0.8 0.7 6 153 Colon 49 21.1 13.3 45 18.8 9.5 94 154 Rectum 29 12.5 8.2 29 12.1 6.6 58 155 Liver 7 3 1.9 4 1.7 1.3 11 156 Gall Bladder 7 3 1.8 13 5.4 1.9 20 157 Pancreas 22 9.5 5.7 26 10.9 5.9 48 160 Nasal Cavities 2 0.9 0.5 0 0 0.0 2 161 Larynx 5 2.2 1.2 0 0 0.0 5 162 Lung 130 56 35.4 52 21.8 12.6 182 163 Pleura 3 1.3 0.8 1 0.4 0.3 4 164 Thymus 0 0 0.0 1 0.4 0.2 1 170 Bone 0 0 0.0 0 0 0.0 0 171 Soft Tissues 5 2.2 1.2 2 0.8 0.4 7 172 Melanoma of Skin 14 6 4.3 8 3.3 2.1 22 173 Skin 5 2.2 1.2 4 1.7 0.7 9 174-5 Breast 0 0 0.0 87 36.4 22.1 87 180 Cervix Uteri 0 0 0.0 8 3.3 2.1 8 181 Placenta 0 0 0.0 0 0 0.0 0 182 Corpus Uteri 0 0 0.0 5 2.1 1.4 5 183 Ovary 0 0 0.0 19 8 5.2 19 184 Vagina 0 0 0.0 0 0 0.0 0 184.1 Vulva 0 0 0.0 0 0 0.0 0 185 Prostate 71 30.6 18.0 0 0 0.0 71 186 Testis 1 0.4 0.4 0 0 0.0 1 187 Penis 0 0 0.0 0 0 0.0 0 188 Bladder 20 8.6 4.8 7 2.9 1.6 27 189 Kidney 19 8.2 5.0 7 2.9 1.5 26 190 Eye 0 0 0.0 2 0.8 0.2 2 191 Brain 10 4.3 3.5 12 5 4.1 22 192 Other CNS 0 0 0.0 0 0 0.0 0 193 Thyroid 2 0.9 0.4 1 0.4 0.1 3 194 Other Endocrine 0 0 0.0 1 0.4 0.3 1 199 Unspecified Site 37 15.9 10.0 43 18 10.2 80 200-2 All Lymphomas 28 12.1 7.4 19 8 3.5 47 202.3-6 Histiocytic Tissue 0 0 0.0 0 0 0.0 0 203 Multiple Myeloma 11 4.7 3.5 9 3.8 1.3 20 204-8 All Leukaemias 16 6.9 4.9 11 4.6 3.0 27 140-208 Total Deaths 550 237.1 149.4 445 186.3 103.9 995 * N = Number CR = Crude Rate ASR = Age Standardised Rate 45