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Rare cancers What is the problem, and how big is it? Rare (orphan) diseases NIH Office for Rare Diseases Prevalence less than 5/10 000 in the community In the US <200 000 cases Eurodis (European Organisation for Rare Diseases)

  1. Rare cancers

  2. What is the problem, and how big is it?

  3. Rare (orphan) diseases NIH Office for Rare Diseases • Prevalence less than 5/10 000 in the community • In the US <200 000 cases Eurodis (European Organisation for Rare Diseases) • 5-8 000 distinct conditions • Affect 6-8% of the population Cancer • EUROCARE working group definition of ‘ very rare ’ diseases Annual crude incidence rates <2/100 000 for both sexes combined (Gatta et al 2006 Lancet Oncology 7:132) • Rare = <6/100,000 • Less common = 6-12/100,000 • >186 cancer types

  4. Collective Impact of Rare Cancers on the Community New cases Deaths Per cent Per cent Cancer site/type (ICD-10 codes) Number of total Rate(b) Risk(c) Number of total Rate(b) PYLL(d) Males Prostate (C61) 15,759 28.7 163.4 1 in 5 2,792 12.9 33.0 20,560 Colorectal (C18 – C20) 7,160 13.0 75.1 1 in 10 2,196 10.1 23.8 30,770 Lung, bronchus & trachea (C33 – C34) 5,826 10.6 61.6 1 in 11 4,733 21.8 50.8 64,090 Melanoma of skin (C43) 5,503 10.0 56.6 1 in 15 815 3.8 8.7 14,868 Lymphoma (C81 – C85, C96) 2,352 4.3 24.3 1 in 33 803 3.7 8.8 12,260 Unknown primary site (C26, C39, C76 – C80) 1,700 3.1 18.5 1 in 40 1,781 8.2 19.7 23,385 Bladder (C67) 1,642 3.0 17.9 1 in 39 589 2.7 6.8 5,308 Leukaemia (C91 – C95) 1,578 2.9 16.8 1 in 47 833 3.8 9.3 12,148 Kidney (C64) 1,395 2.5 14.2 1 in 55 497 2.3 5.3 7,670 Stomach (C16) 1,275 2.3 13.6 1 in 52 720 3.3 7.9 9,818 Other 10,680 19 111 NA 5,911 27 64 94,205 All cancers (C00 – C97(a), D45 – D47(e)) 54,870 100.0 573.4 1 in 2 21,670 100.0 237.5 295,080 Females Breast (C50) 12,126 27.9 112.8 1 in 9 2,664 15.8 23.8 48,910 Colorectal (C18 – C20) 5,817 13.4 51.5 1 in 14 1,872 11.1 16.0 21,798 Melanoma of skin (C43) 4,219 9.7 39.4 1 in 24 385 2.3 3.4 6,790 Lung, bronchus & trachea (C33 – C34) 3,270 7.5 29.3 1 in 24 2,526 15.0 22.3 34,770 Lymphoma (C81 – C85, C96) 1,920 4.4 17.5 1 in 46 736 4.4 6.3 8,725 Uterus, body (C54) 1,718 4.0 15.8 1 in 52 202 1.2 1.8 2,510 Unknown primary site (C26, C39, C76 – C80) 1,592 3.7 13.6 1 in 54 1,741 10.4 14.5 17,635 Ovary (C56) 1,246 2.9 11.4 1 in 73 851 5.1 7.6 13,083 Thyroid (C73) 1,128 2.6 10.9 1 in 103 51 0.3 0.4 555 Leukaemia (C91 – C95) 1,087 2.5 9.8 1 in 83 612 3.6 5.2 8,350 Other 9,343 21 83 NA 5,179 31 44 66,358 All cancers (C00 – C97(a), D45 – D47(e)) 43,466 100.0 395.4 1 in 3 16,819 100.0 145.8 229,483 20,023: 20.4% 11,090: 28.8% 160,563: 30.6% Australian Institute of Health and Welfare

  5. Collective Impact of Rare Cancers on the Community New cases Deaths Per cent of Per cent of Cancer site/type (ICD-10 codes) Number total Rate(b) Risk(c) Number total Rate(b) PYLL(d) Males Prostate (C61) 15,759 28.7 163.4 1 in 5 2,792 12.9 33.0 20,560 Colorectal (C18 – C20) 7,160 13.0 75.1 1 in 10 2,196 10.1 23.8 30,770 Lung, bronchus & trachea (C33 – C34) 5,826 10.6 61.6 1 in 11 4,733 21.8 50.8 64,090 Melanoma of skin (C43) 5,503 10.0 56.6 1 in 15 815 3.8 8.7 14,868 Lymphoma (C81 – C85, C96) 2,352 4.3 24.3 1 in 33 803 3.7 8.8 12,260 Unknown primary site (C26, C39, C76 – C80) 1,700 3.1 18.5 1 in 40 1,781 8.2 19.7 23,385 1:100,000 = 2,224 Australian deaths each year Bladder (C67) 1,642 3.0 17.9 1 in 39 589 2.7 6.8 5,308 Leukaemia (C91 – C95) 1,578 2.9 16.8 1 in 47 833 3.8 9.3 12,148 Kidney (C64) 1,395 2.5 14.2 1 in 55 497 2.3 5.3 7,670 Stomach (C16) 1,275 2.3 13.6 1 in 52 720 3.3 7.9 9,818 Other 10,680 19 111 NA 5,911 27 64 94,205 All cancers (C00 – C97(a), D45 – D47(e)) 54,870 100.0 573.4 1 in 2 21,670 100.0 237.5 295,080 6/100,000 = 14,000 deaths Females Breast (C50) 12,126 27.9 112.8 1 in 9 2,664 15.8 23.8 48,910 Colorectal (C18 – C20) 5,817 13.4 51.5 1 in 14 1,872 11.1 16.0 21,798 Melanoma of skin (C43) 4,219 9.7 39.4 1 in 24 385 2.3 3.4 6,790 Lung, bronchus & trachea (C33 – C34) 3,270 7.5 29.3 1 in 24 2,526 15.0 22.3 34,770 Lymphoma (C81 – C85, C96) 1,920 4.4 17.5 1 in 46 736 4.4 6.3 8,725 Uterus, body (C54) 1,718 4.0 15.8 1 in 52 202 1.2 1.8 2,510 Unknown primary site (C26, C39, C76 – C80) 1,592 3.7 13.6 1 in 54 1,741 10.4 14.5 17,635 Ovary (C56) 1,246 2.9 11.4 1 in 73 851 5.1 7.6 13,083 Thyroid (C73) 1,128 2.6 10.9 1 in 103 51 0.3 0.4 555 Leukaemia (C91 – C95) 1,087 2.5 9.8 1 in 83 612 3.6 5.2 8,350 Other 9,343 21 83 NA 5,179 31 44 66,358 All cancers (C00 – C97(a), D45 – D47(e)) 43,466 100.0 395.4 1 in 3 16,819 100.0 145.8 229,483 Australian Institute of Health and Welfare

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