NCIN Data Briefings
General interest | Breast cancer | Children and TYA cancers | CNS cancers | Colorectal cancers | Gynaecological cancers | Haematological cancers | Head and neck cancers | Lung cancer | Sarcomas | Skin cancer | Upper GI cancers | Urological cancers
Data briefings are short documents highlighting one issue and written for a general audience.
The briefings published to date may be read online and PDF versions downloaded by clicking on the topic specific links.
Linkage of the English Cancer Patient Experience Survey to cancer registration data
Data briefing announcing the data availability for linked CPES/CAS datasets through the Office for data Release (ODR), and briefly summarising the linkage process.
The registration function of the eight former regional cancer registries in England merged in April 2013 to form Public Health England's National Cancer Registration Service (NCRS). Due to improvement in the completeness of the stage of diagnosis in cancer registration data it is now feasible, for the first time, to examine cancer stage by Clinical Commissioning Group (CCG).
The routes to Diagnosis (RtD) study has been updated to include all patients diagnosed in 2006-2010, covering 1.3 million newly diagnosed tumours. The methodology has remained the same as the previous RtD publication. An improvement in the completeness of Hospital Episode Statistics (HES) data linked to cancer registrations has led to HES data being available for more tumours than in the previous iteration of RtD.
This five year cohort enables overall routes to be calculated for less common cancer sites, which previously had too few cases to produce meaningful results. This data briefing looks at the results for “Cancer of Unknown Primary”, included for the first time, with breakdowns available by sex, age and deprivation.
Headline figures for the overall proportion of emergency presentations for cancer differ between the two largest studies conducted: 13% and 24%. However, we show that this difference is not necessarily a true one but reflects differences in classifications and methods of counting. Data collected in primary and secondary care have strengths and weaknesses that reflect their source.
Nearly 60% of Emergency Presentations resulting in a new diagnosis of cancer come through A&E, with 30% being emergency referrals from GPs. Emergency referrals to outpatients are higher for certain cancers. Survival estimates for this group are higher than other emergency subgroups and more comparable to survival from “managed” Routes.
CUP accounts for 3.3% of all newly diagnosed cancers in the UK, and 7.1% in those aged 85+. Incidence rates have fallen by around 40% since the mid 1990s due to improved registration practice and advances in diagnostic methods. Further analyses are needed to improve diagnosis and treatment for these patients.
The publication of material involving comparative data where ‘outliers’ are identified can be a challenging situation. This briefing aims to assist those involved in preparing such outputs and to ensure a common approach across the National Cancer Intelligence Network. This data briefing is supplemented by additional information on the Handling Outliers section of the NCIN website.
The NHS Information Standards Board (ISB) has now granted Full Stage approval to the Systemic Anti-Cancer Therapy (SACT) Information Standard (ISB 1533) and an Information Standard Notice has been circulated to the NHS in England. This data briefing shows some more details and gives a timetable on the data collection.
Later cancer diagnosis is a major explanation for poorer survival rates in the UK. In England, the Improving Outcomes: A Strategy for Cancer estimates that, if patients were diagnosed at the same earlier stage as they are in other countries up to 10,000 deaths could be avoided every year. This briefing provides updated information on the variation in the two-week wait referral rate. This data briefing was produced by Trent Cancer Registry.
There is a marked variation in age-adjusted cancer incidence and mortality rates between rural and urban areas. This is partly due to the variation in socio-economic deprivation but even when this is taken into account some significant differences remain. This data briefing was produced by NCIN.
There is a large reduction with age in the percentage of patients receiving a major resection, even for patients over 50. For patients aged 80 and over, less than 2% had a record of a major resection for six of the thirteen cancer sites analysed. Data briefing prepared by NCIN.
See the full report on NHS treated cancer patients receiving major surgical resections (2011) on our reports page.
23% of newly diagnosed cancer patients came through as emergency presentations. For almost all cancer types, one-year survival rates were much lower for patients presenting as emergencies than for those presenting via other routes. Data briefing prepared on behalf of NCIN by Avon Somerset and Wiltshire Cancer Services.
This data briefing is accompanied by a technical supplement which describes the methods, algorithms and data quality issues in more detail.
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From December 2010, the time between the date when a person is determined to be ‘fit to treat’ after surgery and the start of radiotherapy should be no more than 31 days (Cancer Reform Strategy 2007).
Considerable reductions in the time between final surgery and radiotherapy will be required if this standard is to be met.
Multi-disciplinary teams should plan radiotherapy well ahead to try to ensure that women have their treatment at the earliest appropriate time.
In 598 recurrent breast cancer patients from an MDT data pilot, 58% had distant metastases, and 40% presented through routine follow-up or screening. 85% were identified in routine datasets by cancer registries, 81% in cancer waiting time data (NCWTMDS), and 94% by at least one of these routes. Most (93%) of those not recorded in the NCWTMDS had not received any treatment Referral to a CNS or palliative care worker was documented for only 53% of patients.
Overall 5-year and 15-year relative survival for women with screen-detected invasive breast cancer (97.1% and 83.0% respectively) is very good. There has been a marked improvement in 5-year survival for women with poor prognosis invasive breast cancer detected through the UK NHS Breast Screening Programme from 58.5% for 1992/93 cases to 77.7% for 2002/03 cases. This data briefing was produced by the West Midlands Cancer Intelligence Unit.
The majority (53%) of screen-detected invasive breast cancers are small (<15mm diameter), 26% are Grade I and 78% are lymph node negative. Screen-detected cancers are more likely to receive breast conserving surgery than mastectomy. Data briefing prepared by the West Midlands Cancer Intelligence Unit (WMCIU).
Breast cancer patients are more likely to be affluent than deprived. Affluent patients are more likely to have a screen detected breast cancer. The most deprived patients have a higher mastectomy rates and receive less immediate reconstruction. Data briefing prepared by West Midlands Cancer Intelligence Unit.
Elderly breast cancer patients are less likely to receive surgical treatment or radiotherapy than younger patients. Data briefing prepared by West Midlands Cancer Intelligence Unit.
There are ethnic variations in the age, route of presentation and tumour characteristics of breast cancer patients in England. Patients known to be black are younger, less likely to be screen-detected and have worse prognosis tumours. Data briefing prepared by West Midlands Cancer Intelligence Unit.
Children & TYA cancers:
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Cancer is the most common cause of death from disease in teenagers and young adults (15 to 24 year olds). The aim of the study was to determine if cancer deaths in this age group were more common in Great Britain (England, Wales and Scotland) compared to Australia, Canada, USA and nine other European countries.
Children under 15 years of age who are diagnosed with cancer have high survival rates overall. As with older age groups, children with cancer are at greatest risk of dying in the first year following diagnosis. Therefore reductions in short-term mortality could make an important contribution to increasing long-term survival. This Data Briefing explores patterns of short-term survival and early mortality among children with cancer in the UK according to calendar period, age at diagnosis, sex and type of cancer.
30 day mortality and one year survival vary considerably by type of cancer in those aged 15-24 years. Patients with acute myeloid leukaemia have the highest proportion of early deaths, with 6.4% dying within 30 days of diagnosis and 77% surviving the first year.
The individual risk of a second cancer in the fifteen years after five year survival from a cancer diagnosed in the TYA years is low. However, some groups such as females with Hodgkin Lymphoma (HL) are at increased risk.
Early adult primary cancers that occur after childhood cancers are extremely rare. They account for under 1% of all cancers diagnosed before the age of 40 and do not make a significant impact on the total cancer burden.
For several common cancers, five-year survival is lower for males than for females within the 20 to 24 year age group. These differences are not apparent in 15 to 19 year olds. This data briefing was produced by the North West Cancer Intelligence Service (NWCIS).
Among children with cancer, 47% of deaths occurred in hospital, and 39% occurred in the patient’s own home. Corresponding figures for teenagers and young adults were 52% in hospital and 32% at home. Place of death was more likely to be hospital for Asian patients than for White patients. This data briefing was published by the Childhood Cancer Research Group (CCRG) and the North West Cancer Intelligence Service (NWCIS).
Survival rates for most, though not all, types of cancer have increased in recent years for both 0 - 14 and 15 - 24 year olds. This data briefing was prepared by the Childhood Cancer Research Group (CCRG) and the North West Cancer Intelligence Service (NWCIS).
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Astrocytic tumours are the commonest type of cancer of the brainAstrocytic tumours are a diverse group including a range of histological subtypes and malignancy grades. Survival is highly dependent on tumour grade.
Ependymomas are a group of CNS tumours with moderately good prognosis, though higher grade tumours have slightly poorer survival. The prognosis for spinal ependymomas is better than that for cerebral tumours.
Augmented cancer registration for CNS tumours has the potential to transform our knowledge for this group of patients. This data briefing was prepared by the NCIN CNS Site-Specific Clinical Reference Group.
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Almost 10% of people diagnosed with colorectal cancer die within one month of diagnosis. 56% of people dying within one month are 80 or more years old. 60% of early deaths present initially as emergency cases to hospital. At least 50% of patients who die within one month receive no active treatment. Raising the level of public awareness of colorectal cancer and increasing early diagnosis may help to improve survival rates for colorectal cancer.
Factors associated with the risk of death within 30-days of surgery are complex. Overall, the number of post-operative deaths is falling but the risk varies across the population in relation to the characteristics of the individuals being operated upon. This data briefing was published by the Northern and Yorkshire Cancer Registry and Information Service (NYCRIS).
The first data briefing produced in conjunction with a lead cancer registry shows how relative survival rates differ for colorectal cancer dependent on stage at diagnoses. Data briefing prepared by Northern and Yorkshire Cancer Registry and Information Service.
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Trachelectomy is a relatively new interventional procedure for women diagnosed with cervical cancer. It is usually carried out for the treatment of stage IIA or lower disease in women who would prefer to retain fertility. The briefing aims to assess the use of HES data to identify this procedure and measure variation over time and across regions of England. On average, around 60 women per year received the intervention between 2006 and 2013. There was a peak of 76 cases in 2013, accounting for 6.4% of cervical cancers diagnosed among women aged 45 and under at stage IIA or less. There is some regional variation in the proportion of these women receiving the intervention from 2.0% in Yorkshire and the Humber to 9.0% in London. This variation may be due to differences in clinical management or the recording of the procedure in the HES data. However, it is also likely to be related to the requirement of fertility sparing treatment into later age among the less deprived populations of the southern regions compared to northern regions.
International studies show lower ovarian cancer survival rates in the UK than in other countries with comparable health care systems. Building on previous work that showed a particularly high mortality rate in the first month or two after diagnosis, this analysis considered the association between excess mortality rates and relevant patient and tumour factors in three periods within the first year after diagnosis of ovarian cancer in England.
In England, as in several other countries worldwide, vulval cancer is one of the rarer cancers in women. It is the fourth most common type of gynaecological cancer following endometrial, ovarian and cervical cancer. In 2010, there were almost 1,000 new cases and over 300 deaths from vulval cancer nationally. Evidence highlights that trends in incidence, mortality and survival differ by age. This briefing looks at these variations.
Between 2007 and 2009 there were an average of 7,800 uterine cancer cases diagnosed annually in the UK, making this the fourth most common cancer in women and the most common gynaecological cancer. Between 2008 and 2010, there were an average of just over 1,800 deaths from uterine cancer. This makes uterine cancer the ninth most common cause of cancer death in women in the UK and the second most common gynaecological cancer death after ovarian cancer.
Despite significant improvements over the last decade, ovarian cancer survival in England lags behind comparable countries, highlighted by results from the International Cancer Benchmarking Partnership (ICBP). The ICBP identified that the UK had particularly high mortality in the first few weeks following diagnosis, but did not have an unfavourable stage distribution.
Both ovarian cancer incidence and mortality have decreased in recent years whilst survival has improved. However, there are some important differences by age, particularly in survival rates. There are also interesting patterns in recorded tumour type by age.
There has been an increase in the incidence of cervical cancer in women aged under 35 since the late 1990’s. Over this time there has also been a steady fall in the coverage of screening in women of this age group; however in the last two years coverage has increased. It is important that this trend continues, so that the number of women who develop cervical cancer may be reduced. Data briefing prepared by Trent Cancer Registry and NHS Cancer Screening Programmes.
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The blood cancers are diseases originating in the bone marrow and lymph nodes and include leukaemias, lymphomas and myeloma. They are a very diverse group of diseases affecting people across the whole life course, but with their greatest incidence amongst the elderly. The prognosis and responsiveness to treatment of these conditions also varies very widely, and over the period covered in this report the positive impact of several new forms of treatment was apparent.
Marked variations were observed at both the Cancer Network and Registry levels; reflecting differences in the approaches taken to registering blood cancers. Improvement in the quality of information on blood cancers requires greater standardisation of registry practice and improved access to data from integrated diagnostic services.
Leukaemias are a group of malignant diseases in which the bone marrow and other blood forming organs produce increased numbers of immature or abnormal white blood cells. This leads to an increased risk of infection, anaemia and bleeding.
They are a diverse group of diseases affecting people across the whole life course, but with their greatest incidence in the elderly. The prognosis and responsiveness to treatment also varies considerably by age and between the different diseases.
1. Survival outcomes for different forms of leukaemia should be reported separately. The different cancers called ‘leukaemia’ vary in the groups they affect, in their overall severity and in their outcome. Grouped summary outcomes for leukaemia do not represent accurately the experience for any of the individual cancers. Apparent differences between areas can result from different levels of registration for different cancers.
2. Because of all of these reasons, reporting outcomes for ‘leukaemia’ as a group is misleading.
Most people dying of a haematological cancer do so in hospital. Compared to other cancers, fewer deaths occur at home or in a hospice. This pattern is seen at all ages. The proportion of deaths occurring in hospital is falling, but less than seen in other cancers. This data briefing was published by the Northern and Yorkshire Cancer Registry and Information Service (NYCRIS).
Head and neck cancers:
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Oral cavity cancer is one of the most common types of head and neck cancer. In 2011 in England and Wales over 2,000 people were diagnosed with oral cavity cancer, 60% of which were men. The main risk factors are smoking, excessive alcohol consumption and the chewing of tobacco or paan (areca nut/betel leaf).
This briefing looks at recent trends in 1 and 3 year relative survivali in England and Wales. It highlights the effect of stageii at which the disease is detected as this is a key factor in survival.
The incidence of thyroid cancer in England doubled over the last 20 years. The death rate has decreased in women over the same time period but has not changed in men. Most of the increase in incidence has been in one sub type known as papillary cancer, which has the best prognosis. This is thought to be largely due to increased detection of small papillary cancers associated with the more widespread use of ultrasound and fine needle biopsies.
The incidence of potentially HPV-related H&N SCCs increased between 1990 and 2008 - particularly in males. Patients with potentially HPV-related SCCs are on average younger than those with other non-HPV-related H&N cancers. The risk of developing a potentially HPV-related SCC is higher among people born after 1940 than those born in earlier decades.
This briefing looks at the time trends in 1-year and 3-year relative survival for men and women in England diagnosed with oral cavity cancer between 1990-92 and 2005-07. The Index of Multiple Deprivation 2007 (IMD 2007) is used to examine how the survival rates vary in men and women diagnosed in the period 2004 to 2006 across areas with varied deprivation levels. Data briefing prepared by Oxford Cancer Intelligence Unit.
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Chemotherapy or chemo-radiotherapy is the recommended treatment for small cell lung cancer (SCLC). Surgery is inappropriate for the majority of SCLC patients, since they usually present with metastatic disease. However, on rare occasions patients present with apparently early stage, resectable lung cancers, which are found to be SCLC on biopsy. There may be a role for surgery in stage I SCLC based on favourable outcomes in case series, but there is concern amongst thoracic surgeons and oncologists as to its appropriateness.
Surgical resection is the first line-treatment for non-small cell lung cancer patients with early stage disease and who are considered medically fit. We explored whether there is a survival benefit among patient undergoing surgery for lung cancer in hospitals in England where high numbers of lung cancer resections are carried out.
Male lung cancer incidence rapidly declined between 1990 and 2011, whereas the incidence of lung cancer among women increased during the same period.During the past two decades, one-year survival after a lung cancer diagnosis has increased quite dramatically and more so among women than men.
Lung cancer resection rates have increased in England between 1998 and 2008. The increases were found to particularly affect the older age groups.
There are differences in the incidence of lung cancer between ethnic groups. Lung cancer is most common in White and Bangladeshi men. Compared with women from other ethnic groups, lung cancer is more common in White women.
The difference in lung cancer incidence and survival between urban and rural areas can largely be explained by differences in socioeconomic deprivation, which is most likely to be related to tobacco smoking.
SCLC incidence trends are similar to those in all lung cancer. However, the decrease in the incidence of SCLC is slightly more pronounced. This decline probably reflects the reduction in smoking rates over the study period.
Lung cancer resection rates in England are low and vary across the country. Increasing the resection rate would be expected to lead to an increase of overall lung cancer survival.
Mount Vernon Cancer Network provides a case study where regular and systematic reviews of information about process / clinical measures and survival rates by clinicians to understand and benchmark their lung cancer clinical pathways have yielded improvements. The Network has recently measured a 25% increase in the 1-year survival for lung cancer rates between 2006 and 2009. This means that while previously 1 in 4 patients lived for a year post diagnosis, it is now 1 in 3 patients. This data briefing was produced by the Mount Vernon Cancer Network.
In the UK mesothelioma is five times more common in men than in women. The incidence of mesothelioma is still increasing, and is expected to peak in about 15 years. Survival from mesothelioma is improving but remains very low and varies by area of diagnosis. Data briefing prepared by Thames Cancer Registry.
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Liposarcomas account for approximately 10% of all soft tissue sarcomas diagnosed in England in the last 25 years. Liposarcomas arise from fat cells and can occur anywhere in the body. There are 6 different sub-types; the 4 most common are liposarcoma Not Otherwise Specified (NOS), well-differentiated liposarcoma, pleomorphic liposarcoma and myxoid liposarcoma.
Primary bone sarcomas are an extremely rare form of cancer, with an age standardised incidence rate of 9.4 per million in 2007-2009. Five-year relative survival rates remained static at around 55% over the 25-year period studied.
Approximately 45 malignant tumours of the vertebral column, sacrum, coccyx and base of skull were diagnosed annually in England between 1985 and 2009. Ewing sarcoma, chondrosarcoma and chordoma were the most common sub-types within the sacrum and coccyx, whereas only chordomas were found in the base of skull region.
Approximately 25 primary tumours of the facial skeleton are diagnosed in England annually. However, statistics cannot be validated until coding systems are adapted to further reflect sub-sites.
Over a fifth of bone sarcoma patients recorded in HES have co-morbidities. These occur mainly in patients aged 50 and over. The most common co-morbidity is pulmonary disease in which asthma and chronic obstructive pulmonary disease dominate; the latter being most common in patients aged 80 years or more.
The recorded incidence of soft tissue sarcomas has increased over the past 18 years, although this may be due to improved reporting. Incidence by morphology varies on a very short timescale and is likely to reflect improving diagnostic techniques. 5-year survival is only 51%, and has not changed significantly over the 12 years analysed. This data briefing was prepared by West Midlands Cancer Intelligence Unit (WMCIU).
Bone sarcomas are more likely to affect males than females, with 2 peaks of incidence in early adolescence and the elderly. Osteosarcoma is the most common type of primary bone tumour. Survival rates have increased steadily over the past 25 years. Data briefing prepared by West Midlands Cancer Intelligence Unit.
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Non-melanoma skin cancer (NMSC) is the most common group of cancers, accounting for roughly 20% of all new malignancies and 90% of all skin cancers registered in the UK and Ireland. The two major types of NMSC are basal cell carcinoma and squamous cell carcinoma. Basal cell carcinoma (BCC) affects the basal cells at the bottom of the epidermis (outer section of skin) and represents about 74% of NMSCs.
Mortality rates from malignant melanoma in England are increasing especially in older men: these rates are influenced by the increasing incidence of cases over the years . This study also shows that males present with thicker tumours that could explain at least in part their higher mortality rate.
Rare skin cancers are a mixed group in terms of causation, pathogenesis and outcome. Their rarity makes it challenging to study them. This data briefing describes their incidence and highlights the poor outcome for patients with Merkel cell carcinoma. This data briefing was produced by the South West Public Health Observatory.
In the last ten years the directly age-standardised registration rate for malignant melanoma in England has increased from 9.3 to 14.7 per 100,000 people. More complete registration of skin cancers would support service delivery and inform the development of a national prevention initiative. Data briefing prepared by South West Public Health Observatory.
Upper GI cancers:
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Pancreatic cancer is often diagnosed at an advanced stage as most symptoms may not be evident while the tumour is small and localised. This is one of the major reasons that survival rates are low. This data briefing aims to present a comparison of survival between the constituent countries of Great Britain: England, Wales and Scotland in three time periods (1995-1999, 2000-2004, 2005-2009).
Most of the ethnic groups investigated have a higher incidence of primary liver cancer than the White group for both men and women. The differences could be due to varying prevalence of known risk factors such as chronic hepatitis B and C infection.
There are differences in the incidence of oesophageal and gastric cancer between specific ethnic groups in England. This variation may reflect differences in the exposure to risk factors between ethnic groups. Collecting information on risk factors for different ethnic groups would be important when exploring this further.
The incidence of upper and middle oesophageal and lower oesophageal cancer varies between ethnic groups. This variation may reflect differences in the exposure to risk factors between ethnic groups. Collecting information on risk factors for different ethnic groups would be important when exploring this further.
Ampulla of Vater and duodenal cancers are rare in England. Incidence remained stable between 1998 and 2007, but was slightly higher in more deprived areas. Around one fifth of patients survived five years after diagnosis.
Encouragingly, the proportion of death certificate only registrations decreased between 1999 and 2008. More precise anatomical classification for oesophageal, stomach and pancreatic cancers is needed to allow specific subgroups to be defined and analysed.
Hepatocellular carcinoma is more common in men whereas intrahepatic bile duct carcinoma is more common in women. Incidence is increasing for both subtypes. Variation in the prevalence of known risk factors such as alcoholic cirrhosis and chronic hepatitis B and C infection may explain these patterns.
Between 1998 and 2007 the incidence of stomach cancer decreased in England. The declining prevalence of Helicobacter pylori infection and an increase of fresh food in the diet as opposed to salt preserved foods may have contributed to this decreasing incidence.
The incidence of lower oesophageal cancer increased in males and was higher in males than females. Obesity, specifically the abdominal distribution of body fat that is more common in men, may lead to a higher prevalence of GORD and diagnosed Barrett’s oesophagus, which may partly explain these patterns.
There was a concern that the incidence of pancreatic cancer in patients under 50 might be increasing. As these groups are often considered at low risk of pancreatic cancer the concern was that a cohort of adults might be at higher risk and that they might be receiving a late diagnosis and therefore not receiving timely treatment. This briefing investigates whether the incidence of pancreatic cancer is increasing in the younger age groups. Data briefing prepared by Thames Cancer Registry.
Cancers of the liver and gallbladder are rare in the UK. Primary liver cancers arise in the liver and need to be distinguished from secondary cancers which have metastased from elsewhere in the body. Known risk factors for primary liver cancer are infection with Hepatitis B and Hepatitis C as well as cirrhosis, excessive alcoholconsumption, smoking and diabetes. Known risk factors for gallbladder cancer are gallstones, cholecystitis (inflammation of the gallbladder) and obesity. Data briefing prepared by Thames Cancer Registry.
The incidence of lower oesophageal cancer is around four times higher in males than females. There appears to be some geographical variation in the incidence of this cancer across England that warrants further investigation. Data briefing prepared by Thames Cancer Registry.
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Penile cancer in England is a rare disease. The rate over the last 20 years is typically 1 case per 100,000. Between 2008 and 2010, around 400 cases each year were diagnosed in England. This data briefing examines how incidence rates of penile cancer varied with age between 1990 and 2010.
The majority of bladder cancers are transitional cell carcinomas (TCC). About 1 in 6 are not TCCs and include squamous cell carcinoma, adenocarcinoma and small cell carcinoma. It is unclear if the epidemiology of this group is different, and if their treatments and outcomes are the same.
Differentiated teratomata account for about 7% of the total of both malignant and benign tumours of the testis. Registering them as malignant will increase the number of testicular cancers in England by about 150 each year. This data briefing was produced by the South West Public Health Observatory.
Prostate cancer survival is related to stage at diagnosis. The relative survival for men with advanced and metastatic tumours is markedly worse than for localised tumours. Survival is best for men aged 60-69 at diagnosis. Data briefing prepared by South West Public Health Observatory.
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