Cancer registries and rare cancers: quality of data, supplementary information RARECARE WP6 3rd meeting National Institute of Public Health Warsaw 25th March 2010 RARECARE data quality study on high priority rare cancers (Gemma Gatta, Annalisa Trama)
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Cancer registries and rare cancers: quality of data, supplementary information RARECARE WP6 3rd meeting National Institute of Public Health Warsaw 25th.
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Cancer registries and rare cancers: quality of data, supplementary information
RARECARE WP6 3rd meetingNational Institute of Public Health
Warsaw 25th March 2010
RARECARE data quality study on high priority rare cancers (Gemma Gatta, Annalisa Trama)
ObjectivesObjectives
To verify the diagnostic accuracy
To assess the completeness of incidence
To verify the quality of follow-up
To verify the availability of information on stage, treatment and place of treatment
To improve the estimates of incidence and survival
undifferentiated (8020/3) and anaplastic (8021/3) carcinomas of the digestive tract (C15 to C25)
(to find small cell MDET)
all carcinoids (8240-8244) of the digestive tract (C15 to C25) (to verify the behaviours)
Criteria for defining the behaviour of carcinoids:
Invasion of the muscularis propria
Dimension of the tumour
Well differentiated benign and bordeline ET
Well differentiatedendocrine carcinoma
Undiff endocrine carcinoma
Differentiation Well differentiated Well differentiated Undifferentiated
Angioinvasion No Possible Possible
Size Stomach,
Small intestine: < 1cm
Appendix, colon, rectum: < 2 cm
Pancreas : < 2 cm
Stomach,
Small intestine: >1 cm
Appendix, colon, rectum: > 2 cm
Pancreas : >2 cm
Mitotic Index < 2 2 to 10 > 10
Prol index < 2 % 2 to 15 % > 15 %
Local invasion Digestive tumour:mucosae/submucosae Pancreas: intra-pancreatic
Digestive tumour:> Muscularis propria Appendix: invasion of the
visceral peritoneum
Pancreas: extra-pancreatic extension
Metastases no Possible Possible
Behavior: /1 /3 /3
Carcinoids (Carcinoids (behaviorbehavior))
Cancer registries participating = 21 No. of cases revised = 1672
Information for defining the behavior: available for ONLY 223 cases Behavior defined only if both dimension of the tumor and local invasion were available
CNS tumours revisionCNS tumours revisionThe review focused on
Long-term survivors with a diagnosis of unspecified morphology codes (8000, 8001, 8010)
(to verify the diagnostic accuracy and quality of follow-up)
Cases with diagnosis of Glioma NOS (9380) microscopically verified
(to verify the diagnostic accuracy for tumours with treatment options)
CNS tumoursCNS tumours long survivors long survivors Cancer registries participating = 22 No. of brain cancers long survivors revised = 705 (53% F; 47% M)
Results of the morphology check
93% (653/705) were confirmed brain tumours• 544 = neoplasms NOS• 44 = astrocitomi• 6 = oligodendroglial• 6 = non glial/embryonal tumurs • 2 = ependimal tumours• 1 = sarcoma• 47 = not malignant• 3 = epithelial neoplasms, NOS
5% (27/551) were not mesothelioma. In details:• 8 adk (colon, lung, breast, ovary)• 6 neoplasm, NOS (lung, pleura, ovary)• 3 sarcomas (lung, bone, thyroid gland)• 1 lymphoma• 9 (benign, border line, error)
CNS tumoursCNS tumours long survivors long survivorsResults of the morphology check
7% (52/705) were not brain tumours• 17 = meningiomas• 4 = sarcomas• 3 = neoplasms, NOS• 2 = lung tumours (1epithelial and 1 squamous cell neoplasm)• 2 = breast adk• 2 = lymphomas• 2 = ependimal tumours• 1 = skin melanoma• 1 = endocrine glands germinoma• 1= spinal cord astrocitoma• 11 = not malignant• 8 = information not available
CNS tumoursCNS tumours long survivors long survivors
Results of the life status check
343/705 (49%) confirmed as real long survivors Real brain tumors survivors 282/705 (40%) Not brain tumours long survivors 61/705 (9%)
337/705 (48%) were brain tumours not long survivors 124 lost to follow-up 213 death date changed
For 25 cases (3%) the information on the follow-up was missing. It has to be verfied with CRs
Glioma, NOSGlioma, NOS Cancer registries participating = 21 No. of cases revised = 472 (55% M, 45% F)
Morphology after the revision Freq. %
glioma malignant 362 76.69
astrocytic tumors 87 18.43
oligodendroglial 5 1.06
non glial/embryonal tumors 3 0.64
ependimal tumors 1 0.21
neoplasms, NOS 4 0.85
sarcoma 2 0.42
not malignant 8 1.69
Total 472 100
96 cases of brain tumours will contribute to modify incidence and 96 cases of brain tumours will contribute to modify incidence and survival of the second layer entitiessurvival of the second layer entities
unspecific site codes C02.8 (overlapping lesion of the tongue) and C05.9 (palate, NOS) (to distinguish between oral cavity and oropharynx) 5-year survival: oropharynx = 37%
oral cavity = 59%
Oral cavity
Oropharynx
Carcinoma, NOSCarcinoma, NOS
Cancer registries participating = 26 No. of cases revised = 555 (68% M, 32% F)
Freq. %carcinoma, NOS 497 89.55
squamous cell 47 8.47
adenocarcinoma 5 0.9
sarcomas 1 0.2
Not in incidence any more 5 0.9
Total 555 100
Results of the morphology check
Unspecified sitesUnspecified sites
Cancer registries participating = 22 No. of cases revised = 388 (71% M, 29% F)
Results of the topography check
Freq. %
unspecified sites 272 70.1
oral cavity 69 17.78
oropharynx 43 11.08
nasopharynx 1 0.26
hypopharynx 1 0.26
erased 2 0.52
Total 388 100
Some conclusions (1)
Mesothelioma, angiosarcoma, CNS neoplasms NAS long survivorsCan we further describe these cases?Can we suggest recommendations to
registries? Pleura and CNS epithelial tumours
Can we suggest recommendations to registries
Some conclusions (2)
MDET Can we accept the criteria for define the
invasion for carcinoids? Can we improve the diagnosis?
Sarcomi GIST
Leukaemia Underestimation of CML incidence Evolution of the lymphoma and leukaemia