The Rich Picture. Dave, 75, living with head and neck cancer. Understanding the numbers, needs and experiences of people affected by cancer

Transcription

1 The Rich Picture Dave, 75, living with head and neck cancer Understanding the numbers, needs and experiences of people affected by cancer

2 About this Rich Picture This document is a collation of the key available evidence about the numbers, needs and experiences of people affected by cancer. Our aim is that the insight within this document will summarise the numbers, needs and experiences of people affected by cancer for Macmillan staff, cancer care professionals, volunteers and other interested parties. It includes data specific to the particular group who are the focus of this Rich Picture, as well as more generic information about all people affected by cancer where specific data are not available or where the information applies to all groups of people with cancer. The Rich Picture is intended to be accessible to both clinical and non-clinical cancer support staff. Therefore the language and facts included are intended to cater for information needs of both groups. We have included references to other documents to help with interpretation of some facts included, and a Jargon Buster of some technical terms is included in Appendix A. The information could be valuable in many ways: Adding weight and evidence to negotiations with partners and commissioners Providing evidence to support campaigning Enabling more effective marketing Inspiring and engaging supporters to give and do more Providing some insight into the lives of people with cancer This document is not intended to Be a comprehensive collation of all evidence on the group affected by cancer who are the focus of this Rich Picture Suggest or recommend that specific action should be taken For simplicity, the year to which the data in this document relate and the sample size is not always shown in the main sections, however this is shown in the original data linked from the references section. If you are short on time, a quick read of the summary on pages 2 and 3 will give you a brief outline of the rest of the content of this comprehensive document. This Rich Picture is one of a suite of documents. To access these documents please visit or for further information please contact evidence@macmillan.org.uk The legal bit The information contained in this document is a summary of selected relevant research articles, papers, NHS data, statistics and Macmillan-funded research. This document intends to summarise in a broad sense the numbers, needs and experiences of people with cancer, it is not an exhaustive systematic review that follows strict scientific community rules governing such types of review. However we have compiled the information using broad quality assessment criteria to ensure that the information presented in this document is largely representative and unbiased. It is worth noting that people with cancer have a very wide range of experiences; therefore the information presented here may not reflect the experiences or profile of everyone within the category presented. Macmillan or any other organisation referenced in this document claim no responsibility for how third parties use the information contained in this document. We have endeavoured to include all the major data available to us as of July 2014, but a document of this nature (essentially a summary of a large body of evidence) inevitably goes out of date. Macmillan has sought external validation of this document from clinical experts and we aim to regularly update the content of this document. There may be data that have been released that does not appear in this document and Macmillan is under no obligation to include any particular data source. Any medical information referred to in this document is given for information purposes only and it is not intended to constitute professional advice for medical diagnosis or treatment. Readers are strongly advised to consult with an appropriate professional for specific advice tailored to your situation. The Rich Pictures are licenced under a Creative Commons Attribution-NonCommercial-Share Alike 4.0 International Licence. Users are welcome to download, save, or distribute this work and make derivative works based on it, including in foreign language translation without written permission subject to the conditions set out in the Creative Commons licence.

3 Guidance on referencing this document You are free to use any of the data contained in this document, however when quoting any factual data that do not belong to Macmillan, it is best practice to make reference to the original source the original sources can be found in the References section at the back of this document on page 58. Other related information for people affected by cancer This document is designed to summarise the numbers, needs and experience of people with cancer. It is not designed specifically with people affected by cancer in mind, although some people within this latter group may find the information contained here helpful. People affected by cancer may find our information booklet Understanding head and neck cancers (MAC11632) more helpful: Understanding head and neck cancers MAC11652 All these titles are available in hard-copy by calling our Macmillan Support Line free on (Monday to Friday, 9am 8pm), or by ordering online at A wealth of other resources are also available, all produced by Macmillan Cancer Support and available free of charge.

4 OTHER RELATED INFORMATION FOR MACMILLAN STAFF Macmillan staff may also wish to use this Rich Picture document in combination with other connected documents, such as the Impact Briefs or the Macmillan Communications Platform. You may wish to select evidence from more than one source to build a case for support, add weight to your influencing, or to engage and inspire Macmillan s supporters. A range of evidence that may be helpful to you is summarised here. Please note that any hyperlinks active below may not work for non-macmillan staff. Case Study Library People affected by cancer Contains stories and quotes from real-life examples of people affected by cancer who have been helped by Macmillan. Professionals/Services Contains specific examples of our services across the UK, and the impact they are having. Comms Platform Describes how to communicate with people affected by cancer. Rich Pictures Describe the numbers, needs and experiences of key groups within the 2.5 million people with cancer. Impact Briefs Generically describe what our services do, and the impact they have on people affected by cancer. Local Cancer Intelligence A local overview of the essential data on the changing burden of cancer in your area, including prevalence, survival, patient experience and comparisons across clinical commissioning groups. Routes from Diagnosis Results from the first phase of the Routes from Diagnosis study, including outcome pathways, survival rates, inpatient costs and morbidities associated with breast, lung, prostate and brain cancers. For further information about any of the above, please contact a member of Macmillan s Evidence Department, or contact evidence@macmillan.org.uk.

5 Summary of people living with head and neck cancer 2 What is head and neck cancer? 4 Macmillan s aims and outcomes 6 Key facts and stats 8 The cancer journey 24 Needs and experiences Diagnosis 26 Needs and experiences Treatment 34 Needs and experiences Survivorship (post-treatment) 40 Needs and experiences Progressive illness and end of life 44 Lifestyle and perceptions 50 References 58 Appendix A Jargon buster 65 1

6 The rich picture on people with head and neck cancer Summary of head and neck cancer summary of people living with head and neck cancer Key stats Diagnosis Treatment Head and neck cancer is the seventh most commonly diagnosed cancer and an average of 31 people receive a head and neck cancer diagnosis every day (3a, 3b, 3c, 3d) in the UK. Around 62,530 people were living with head and neck cancer in the UK in (4) Head and neck cancers cause over 3,300 deaths per year (6a, 6b, 6c) in the UK. Head and neck cancer is much more common in men than in women. Oral cancer, the most common form of head and neck cancer, causes more deaths in males than females at a ratio of 2:1. (17) 20% of people with head and neck cancer felt that their health deteriorated whilst they were waiting for their first hospital appointment. (32) Weight loss is a common phenomenon in head and neck cancer patients at diagnosis. (31) There are still significant delays in the diagnosis of head and neck cancer. This is because patients are often poorly educated about symptoms. (34) 83% of cancer patients (not specifically head and neck cancer) are, on average, 570 a month worse off as a result of a cancer diagnosis. (13) Most head and neck cancers are treated by surgery, radiotherapy or a combination of both. Plastic or reconstructive surgery is also often needed for patients with these cancers. (39) 81% of patients who are undergoing treatment for head and neck cancer experience pain. (52) Treatment for head and neck cancers can cause problems with eating, swallowing, breathing and speech. (23) 70% of people needing emotional support with head and neck cancer felt that they were definitely given enough emotional support from hospital staff during treatment. (57) Head and neck cancer is the seventh most common type of cancer in the UK. Diagnosis of head and neck cancer may be delayed by poor patient education about its symptoms. Treatment for head and neck cancer can cause pain, and problems with eating and swallowing. 2

7 Understanding the numbers, needs and experiences of people affected by cancer Survivorship End of life Lifestyle & perceptions Treatment for head and neck cancers often has permanent effects on basic activities like breathing, speaking, eating and drinking. (23) Patients with head and neck cancer have been found to be more frequently distressed than patients with other cancers. (66) Oral dysfunction, loss of appetite, deteriorated social functioning and high levels of anxiety are barriers for head and neck cancer patients to return to work after treatment. (62) High levels of self-consciousness of appearance have been found amongst patients with head and neck cancer. (65) 457,000 people (not just those with cancer) need good palliative care services every year in England, but around 92,000 people are not being reached. (75) Those who are older, male, from ethnic minorities, not married, lacking in home care or socio-economically disadvantaged are all less likely to access community palliative care services. (83) The most common symptoms experienced by more than half of people during their last two weeks of life include shortness of breath, pain, and confusion. (77) Death of a partner has been shown to be a trigger for claiming income support. (80) Asian women have an increased risk of cancer of the mouth compared to those of White or Black ethnic origin. (19) Media reports on head and neck cancer clearly focus on the causes of the disease. The most frequently cited words include alcohol and drinking. (89) Elderly people reliant on state support are wellrepresented amongst people being treated for head and neck cancer. (86) Summary of head and neck cancer Patients with head and neck cancer may be self-conscious of their appearance. 92,000 people who require good palliative care are not being reached. 3

8 The rich picture on people with head and neck cancer What is head and neck cancer? introduction to head and neck What is head and neck cancer? (1) Cancer can occur in any of the tissues or organs in the head and neck. There are over 30 different places in which cancer can develop in the head and neck area. The most commonly diagnosed head and neck cancers are: Cancers of the Oral Cavity Oropharyngeal cancer Cancer of the ear Cancer of the salivary gland Cancer of the eye Cancer of the voice box (larynx), Cancer of the thyroid gland About 90% of head and neck cancers are of a type called squamous cell carcinoma. These start in the cells that form the lining of the mouth, nose, throat or ear, or the surface layer covering the tongue. In rarer instances, head and neck cancers can also develop from other type of cells: cancer There are a number of risk factors that can increase the chance of developing head and neck cancer. These are: Gender Head and neck cancers are more common in men than women. Age Head and neck cancers are more common in older people. Smoking Drinking alcohol Long periods of exposure to the sun A poor diet Exposure to chemicals Human papilloma virus Want to know more? Macmillan produces a wealth of information about what head and neck cancer is, its causes, symptoms and treatment. Macmillan staff can refer to reference (1) on page 58 for where you can find this information, or if you re affected by cancer, call our Macmillan team on the number below, or visit our website. Lymphomas develop from the cells of the lymphatic system. Adenocarcinomas develop from cells that form the lining of glands in the body. Sarcomas develop from the cells which make up muscles, cartilage or blood vessels. Melanomas start from cells called melanocytes, which give colour to the eyes and skin. Almost one in two of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don t have to go through it alone. The Macmillan team is with you every step of the way. Call the Macmillan team free on (Monday to Friday, 9am-8pm) or visit 4

9 What is head and neck cancer? I had a very, very full life. I absolutely loved my work. I was heavily involved in my rugby club, I actually made the programme and printed the programme every week. Then when I was diagnosed and I started my chemo I still went down, I still did the programmes. But, after the second session I stopped going down because I was losing my hair, I couldn t eat, I couldn t swallow. I lost over six and a half stone in two months. In my down moments I thought, I ll never do this. I ll never do this. But, then I would tell myself, you ve got to try and do it, you must do it. Dave, 75 5

10 The rich picture on people with head and neck cancer Macmillan s aims and outcomes Macmillan s aims AND outcomes Macmillan s aims and outcomes and how they are different for people with head and neck cancer The estimated total number of people living with cancer in the UK in 2015 is almost 2.5 million. Assuming that all existing trends in incidence and survival continue cancer prevalence is projected to increase to 4 million in Particularly large increases are anticipated in the oldest age groups and in the number of long term survivors. By % of all cancer survivors will be at least 65 years old and 69% of cancer survivors will be at least 5 years from diagnosis. (2) How is this different for people with head and neck cancer? Macmillan is carrying out work internally to baseline the 9 Outcomes, and we hope to be able to show how the 9 Outcomes vary for different groups. This document will be updated when this work is complete, and the information used to help focus our efforts to reach those most in need of support. Macmillan s ambition is to reach all of these people and help improve the set of 9 Outcomes you can see opposite. Remember, certain groups will identify more or less strongly with the various Outcomes. Around 62,530 people were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis. (4) 6

11 Understanding the numbers, needs and experiences of people affected by cancer The 9 Outcomes for people living with cancer I was diagnosed early I understand, so I make good decisions I get the treatment and care which are best for my cancer, and my life Macmillan s aims and outcomes Those around me are well supported I am treated with dignity and respect I know what I can do to help myself and who else can help me I can enjoy life I feel part of a community and I m inspired to give something back I want to die well 7

12 The rich picture on people with head and neck cancer Key facts and stats The facts on head and neck cancer This section presents some of the key stats and facts relating to people with head and neck cancer. You may benefit from referring to the jargon buster on page 65 for details on some of the terms used in this section. Please note that incidence and mortality data on all cancers exclude non-melanoma skin cancer. 31 people are diagnosed with head and neck cancer (3a, 3b, 3c, 3d) every day 62,530 people were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis. (4) 85% of men live for more than one year following a diagnosis of laryngeal cancer, one of the most common types of head and neck cancer. (5) 66% of men live more than five years after their laryngeal cancer diagnosis. Survival rates for other head and neck cancers are not available. (5) 9people die every day of head and neck cancer (6a, 6b, 6c) in the UK 8

13 Understanding the numbers, needs and experiences of people affected by cancer How many people get head and neck cancer per year? (3a, 3b, 3c, 3d) (incidence) Cancer incidence, UK, 2012, top 10 cancer sites Breast 51,079 Key facts and stats Lung Prostate Colorectal 44,486 43,436 41,854 Malignant Melanoma 13,497 Non-Hodgkin Lymphoma 12,879 Head & Neck Bladder Kidney Uterus 11,152 10,702 9,524 8,617 Head and neck cancer is the seventh most commonly diagnosed type of cancer, with over 11,000 new cases of head and neck cancer being diagnosed every year. 9

14 The rich picture on people with head and neck cancer Key facts and stats How many people die from head and neck cancer per year? (6a, 6b, 6c) (mortality) Mortality, UK, 2012, top 10 cancer sites Lung 35,392 Colorectal 16,198 Breast 11,732 Prostate 10,841 Pancreas 8,672 Oesophagus 7,705 Bladder 5,244 Stomach 4,759 Non-Hodgkin Lymphoma 4,687 Ovary 4,136 Head and neck 3,387 Head and neck cancers cause over 3,300 deaths in the UK every year. 10

15 Understanding the numbers, needs and experiences of people affected by cancer How many people are currently living with head and neck cancer? (prevalence) (4) People were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis. 62,530 Key facts and stats 11

16 The rich picture on people with head and neck cancer Key facts and stats What are the key stats for England? See data on incidence, mortality and prevalence for England How many people get head and neck cancer per year in England? (incidence) (3a) 8,916 new cases of head and neck cancer diagnoses in England in How many people die from head and neck cancer per year in England? (6b, 9) (mortality) 2,712 head and neck cancer deaths in England in How many people are living with head and neck cancer in England? (prevalence) (4) 50,359 people were living with head and neck cancer in England in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in England? (17) 8.6 new cases of oral cancer diagnoses in England in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in England? (22) 2.4 cases of oral cancer deaths in England in 2011 per 100,000 heads of population 12

17 Understanding the numbers, needs and experiences of people affected by cancer What are the key stats for Scotland? See data on incidence, mortality and prevalence for Scotland How many people get head and neck per year in Scotland? (incidence) (3c) 1,315 new cases of head and neck cancer diagnoses in Scotland in Key facts and stats How many people die from head and neck cancer per year in Scotland? (mortality) (6c) 422 head and neck cancer deaths in Scotland in How many people are living with head and neck cancer in Scotland? (prevalence) (4) 7,094 people were living with head and neck cancer in Scotland in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Scotland? (17) 11.8 new cases of oral cancer diagnoses in Scotland in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Scotland? (22) 3.8 cases of oral cancer deaths in Scotland in 2011 per 100,000 heads of population 13

18 The rich picture on people with head and neck cancer Key facts and stats What are the key stats for Wales? See data on incidence, mortality and prevalence for Wales How many people get head and neck cancer per year in Wales? (incidence) (12) 610 new cases of head and neck cancer diagnoses in Wales in How many people die from head and neck cancer per year in Wales? (mortality) (17) 169 head and neck cancer deaths in Wales in How many people are living with head and neck cancer in Wales? (prevalence) (4) 3,366 people were living with head and neck cancer in Wales in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Wales? (17) 10.1 new cases of oral cancer diagnoses in Wales in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Wales? (22) 2.3 cases of oral cancer deaths in Wales in 2011 per 100,000 heads of population 14

19 Understanding the numbers, needs and experiences of people affected by cancer What are the key stats for Northern Ireland? See data on incidence, mortality and prevalence for Northern Ireland How many people get head and neck cancer per year in Northern Ireland? (incidence) (3d) 311 new cases of head and neck cancer diagnoses in Northern Ireland in Key facts and stats How many people die from head and neck cancer per year in Northern Ireland? (mortality) (3c) 84 head and neck cancer deaths in Northern Ireland in How many people are living with head and neck cancer in Northern Ireland? (prevalence) (4) 1,709 people were living with head and neck cancer in Northern Ireland in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). **Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Northern Ireland? (17) 9.3 new cases of oral cancer diagnoses in Northern Ireland in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Northern Ireland? (22) 2.6 cases of oral cancer deaths in Northern Ireland in 2011 per 100,000 heads of population 15

20 The rich picture on people with head and neck cancer Key facts and stats What proportion of people survive head and neck cancer? (survival) (5) Relative 5-year survival estimates, , by gender, England Testes 97.1% Melanoma 85.5% 92.1% Breast 85.0% Hodgkin Lymphoma 82.4% 86% Prostate 81.7% Uterus 77.4% Cervix 67.3% Larynx 66.1% Non-Hodgkin Lymphoma 62.4% 68.5% Bladder 58.6% 49.1% Rectum 57.1% 59.9% Male Colorectal 56.5% 57.8% Female 16

21 Understanding the numbers, needs and experiences of people affected by cancer Unfortunately, research on the survival rates for all types of head and neck cancer has not yet been carried out. However, we do have 5-year survival rates for laryngeal cancer, the second most common type of head and neck cancer. This data is only available for men due to the relatively low number of women who get laryngeal cancer. Key facts and stats Of the 21 most common cancer types, laryngeal cancer is placed eighth in the rankings of 5-year survival in England. 17

22 The rich picture on people with head and neck cancer Key facts and stats How many people live beyond one year of their head and neck cancer diagnosis? (5) Unfortunately, research on one-year survival rates for the majority of head and neck cancer has not yet been carried out. However, we do have one-year survival rates for laryngeal cancer, the second most common type of head and neck cancer. This data is only available for men due to the relatively low number of women who get laryngeal cancer. Age-standardised relative survival estimates, , by gender, England Testis 98.1% Melanoma 96% 97.9% Breast 95.8% Prostate 93.1% Uterus 89.9% Larynx 85% Cervix 83.7% Rectum 79.9% 79.4% Non-Hodgkin lymphoma 77.4% 80.1% Bladder 78% 67.2% Colorectal 75.9% 74.7% Men Lung 31% 35.4% Women 18

23 Understanding the numbers, needs and experiences of people affected by cancer How do UK survival rates compare internationally? Specific data is not readily available on head and neck cancer survival rates to compare the UK internationally, although data for all cancers (not just head and neck cancer) does show that survival rates in England are improving overall. Compared to the latest international data, however, England has lower overall one-year and five-year cancer survival rates than many countries including Canada, Australia, Sweden and Norway. This suggests there is more we can do to improve survival for people with cancer in the UK. (16) What are the major demographic variations in incidence, mortality, prevalence and survival for head and neck cancer? Gender Age Oral cancer incidence is strongly related to age. For men, incidence rates increase sharply from around age and peak at ages 60-69, before falling in the over 70s age group. Agespecific oral incidence rates increase much more gradually for women, from around age 40-44, but peaking in the 85+ age group. In the UK between 2009 and 2011, an average of 71% of male oral cancer cases and 59% of female oral cancer cases were diagnosed in the age group. This is significantly higher than the average incidence of oral cancer in people aged 75 and over, with 15% of cases in men and 29% in women. (17) Laryngeal cancer is rarely diagnosed in people younger than 40, but incidence rises steeply thereafter, peaking in people aged Nearly three quarters of cases (74%) occur in people over the age of 60. (18) Key facts and stats The lifetime risk of developing oral cancer in the UK is estimated to be 1 in 84 for men and 1 in 160 for women. (17) Laryngeal cancer is much more common in males than in females. In the UK there were 1,932 new cases diagnosed in males in This compares with 428 cases in females giving a male:female ratio of almost 5:1. (18) Ethnic background Asian women are significantly much more likely to get cancer of the mouth than White or Black women. Age-standardised rates for Asian people ranged from 4.0 to 7.1 per 100,000, and were significantly higher than the age-standardised rates of 3.4 to 3.6 per 100,000 for White people for all ages. Rates for the Black community were significantly lower than either of the other two groups, ranging from 1.2 to 2.9 per 100,000. (19) As for most cancers, survival is better for younger than older people with cancers of the oral cavity, oropharynx and tongue. The five-year survival rates for laryngeal cancer in men in England between 2007 and 2011 ranged from 76% in the age group, to 71% in the group and 56% in the group. (5) Social background Oral cancer incidence is strongly associated with social deprivation. This is reflected in statistics for all head and neck cancer types. The most recent England-wide data for shows age-standardised incidence rates for head and neck cancer are around 130% higher (more than double) for men living in more deprived areas compared with the least deprived, and more than 74% higher for women. Similar results have also been published for Northern Ireland and Wales. A study in Scotland for shows a slightly larger deprivation gap, with agestandardised incidence rates being three times higher in the most deprived population. (17) 19

24 The rich picture on people with head and neck cancer Key facts and stats What are the geographical hotspots for head and neck cancer incidence, mortality and survival? (21) The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Oral cancer incidence, UK, Low Medium High High Important note These maps show only the broad patterns of variation in incidence and mortality. Access to the very detailed and accurate data at the cancer network and strategic health authority level is via the Oxford cancer intelligence unit, head and neck cancer e-atlas, ociu.nhs.uk/data/eatlas/atlas. html or Macmillan staff can contact Macmillan s Health data team. The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Details of other types of head and neck cancer are available on the link above. Oral cancer is most common in the North West of England and South Scotland. It is less common in Wales and the South of England. 20

25 Understanding the numbers, needs and experiences of people affected by cancer Oral cancer mortality, UK, Key facts and stats Low Medium High High Important note These maps show only the broad patterns of variation in incidence and mortality. Access to the very detailed and accurate data at the cancer network and strategic health authority level is via the Oxford cancer intelligence unit, head and neck cancer e-atlas, ociu.nhs.uk/data/eatlas/atlas. html or Macmillan staff can contact Macmillan s Health data team. The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Details of other types of head and neck cancer are available on the link above. Oral cancer mortality rates are generally higher in West Scotland, Northern Ireland and the North of England compared with the rest of the UK. Survival Unfortunately, data is not available on the survival rates for head and neck cancers. 21

26 The rich picture on people with head and neck cancer Key facts and stats What are the major trends? (Incidence/mortality/prevalence or survival) Oral cancer incidence rates have increased in Britain since the mid-1970s, with most of this increase occurring since the late 1980s for both sexes. In the last decade (between and ), European age-standardised incidence rates have increased by 32% and 33% for men and women, respectively. (17) The age-standardised incidence rates for laryngeal cancer in Great Britain are very different for males and females. For males, the incidence rate rose from just under 6 per 100,000 in the late 1970s to a peak of 6.9 per 100,000 in This rate slightly dropped to 6.4 per 100,000 in early 2000s, and decreased even further from 2002 onwards to 5.0 per 100,000 in The rate for females has remained close to 1 per 100,000 population throughout the past decades. (18) The overall age-standardised mortality rate for oral cancer has remained fairly stable between 1971 and 2011, with rates at 3.6 and 1.5 per 100,000 in 2011 for males and females, respectively. However, the all-ages oral cancer mortality figure masks a variation in age-specific trends. Mortality rates among men aged 80 and over have fallen by more than 65%, while rates in those aged have also fallen by 65% since By contrast, for men aged there has been an increase of 93%. For younger men the rate has remained stable. (22) 22

27 Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The diagnosis was a bombshell I am a lifelong non-smoker, I drink alcohol in very small amounts, and I have a history of eating well. I had no symptoms resulting from the primary tumour - no pain, no difficulty swallowing. Prina, 52, North West 23

28 The rich picture on people with head and neck cancer The cancer journey The cancer journey We know that everyone with cancer has different experiences at different times of their cancer journey. However, most people will go through one or more of the four stages of the cancer journey. The following pages summarise what we currently know about the needs and experiences of people with head and neck cancer at these stages. 24

29 Understanding the numbers, needs and experiences of people affected by cancer A typical cancer journey showing four key stages: Diagnosis Treatment The cancer journey What happens to me when I m diagnosed with cancer? People often show signs and symptoms that may be caused by cancer, and a GP can refer patients for tests to find out more. Screening aims to detect cancer at an early stage or find changes in cells which could become cancerous if not treated. However, screening is not yet available routinely for head and neck cancer. What can I expect when I m being treated for cancer? Cancer can be treated in different ways depending on what type of cancer it is, where it is in the body and whether it has spread. Different cancer types can have varying treatment regimes, and treatment is personalised to each patient. However, screening can only pick up some cancers, and we know that some people have their cancer diagnosed at a late stage this can have a huge effect on their chances of survival. Survivorship* If I complete my treatment for cancer, what next? An increasing number of people survive their initial (or subsequent) cancer treatments, and often have rehabilitation and other needs post-treatment. We also know they need support to be able to self-manage. Many people in this stage experience long-term or late effects of their cancer, and/or their cancer treatment. Progressive illness and end of life If my cancer is incurable, what might I experience? Progressive illness includes people with incurable cancer, but not those in the last year of life. Many of these people have significant treatment-related illnesses. End of life generally means those in the last year of life. Needs often get greater as the person moves closer to death. * While Survivorship relates to the time both during and post-treatment, as illustrated by the Recovery Package (p41), this section largely highlights the post-treatment needs and experiences of people living with cancer. 25

30 The rich picture on people with head and neck cancer The cancer journey Diagnosis needs and experiences diagnosis What are the top 3 signs and symptoms of head and neck cancer? (23) There are over 30 different areas of the head and neck where cancer can develop so signs and symptoms vary. Some of the most common include: 1. Hoarseness persisting for more than six weeks 2. Ulceration of the mouth persisting for more than three weeks 3. Oral swellings persisting for more than three weeks How good are we at early diagnosis? How aware are people of signs and symptoms? How aware are GPs of signs and symptoms? General awareness of cancer signs and symptoms is lower in men, those who are younger, and from lower socio-economic status groups or ethnic minorities. (25) The most commonly endorsed barriers to seeking medical help with potential cancer symptoms are: difficulty making an appointment, worry about wasting the doctor s time and worry about what would be found. Emotional barriers are more prominent in lower socio-economic groups and practical barriers (eg too busy ) are more prominent in higher socio-economic groups. (25) Low cancer awareness contributes to delay in presentation for cancer symptoms and may lead to delay in cancer diagnosis. (26) Head and neck cancers are often diagnosed late, because they can lack any specific symptoms, and patients often present having developed a second primary tumour affecting their respiratory system, for example in the lungs. (24) Because head and neck cancers are relatively rare, the average GP would only expect to see a new case about once every six years. (23) We were unable to find any specific research into GP awareness of signs and symptoms of head and neck cancer. How well does screening work for head and neck cancer? There is no national screening programme for any form of head and neck cancer and it is unlikely that such a programme will be established in the near future. Screening has been considered for oral cancer but as it is relatively rare the pick-up rate would be very low. There is also little evidence to show that screening would be beneficial for the population as a whole. More research is needed, particularly on screening members of high risk groups. (92) Patients with cancer in the UK tend to present with more advanced disease and have poorer survival rates than many of their European counterparts. The most likely explanations are either late presentation by patients or late onward referral by GPs. (25) 26

31 Understanding the numbers, needs and experiences of people affected by cancer I was diagnosed with a tumour in one of my tonsils and was told I d be having a scan that same afternoon. My first thought was that I really didn t have time as I had a business meeting. My second thought was perhaps I ll never be able to work ever again. The cancer journey Diagnosis Mark, 58 27

32 The rich picture on people with head and neck cancer The cancer journey Diagnosis How is head and neck cancer diagnosed?* (Routes to diagnosis) (27) Routes to diagnosis, , England Oral Emergency 6% GP referral 27% Two Week Wait 31% Other** 35% Larynx Emergency 11% GP referral 40% Two Week Wait 33% Other** 15% * Does not add up to 100% due to rounding. ** Other includes inpatient, outpatient, and unknown routes. 11% of people newly diagnosed with cancer of the larynx, and 6% of people diagnosed with cancer of the oral cavity are diagnosed via the emergency route. This is significantly lower than the average for all cancers (23%), although patients with head and neck cancers tend not to be diagnosed early. 28

33 Understanding the numbers, needs and experiences of people affected by cancer How many head and neck cancer patients had to see their GP more than twice before they were diagnosed? (28) More than two GP visits, 2013, UK Brain/Central Nervous system Haematological Sarcoma 37% 36% 39% The cancer journey Diagnosis Other 35% Lung Upper Gastro-Intestinal Colorectal 32% 32% 31% Gynaecological Head and Neck Prostate Urological 28% 26% 24% 22% Skin 10% Breast 8% 26% of people newly diagnosed with head and neck cancer had to see their GP more than twice before they were diagnosed compared with 8% of breast cancer patients, and 10% of skin cancer patients. 29

34 The rich picture on people with head and neck cancer The cancer journey Diagnosis How does stage at diagnosis relate to probable survival rates? The impact of Stage at diagnosis on survival head and neck cancer The staging of the different types of head and neck cancers are all slightly different. (29) Most types of cancer have 4 stages, numbered from 1 4. Stage 1 Stage 2 Stage 3 Stage 4 Usually means a cancer is relatively small and contained within the organ it started in. Usually means the cancer has not started to spread into surrounding tissue, but the tumour is larger than Stage 1. Sometimes Stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the type of cancer. Usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in one area. Means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer. The later the stage at diagnosis, the poorer the chances of survival in other words early diagnosis and treatment of head and neck cancer saves lives. 30

35 Understanding the numbers, needs and experiences of people affected by cancer How long do people with head and neck cancer have to wait to be referred? (30) According to recent data for England, 95% of patients with suspected head and neck cancer were seen by a specialist within 2 weeks of referral. This is in line with the average of 94% for all cancers. The cancer journey Diagnosis 31

36 The rich picture on people with head and neck cancer The cancer journey Diagnosis Physical and medical needs Financial needs Pain, mouth sores, loss of appetite and swallowing problems are reasons for the observed weight loss in head and neck cancer patients even before treatment has started. (31) 20% of people with head and neck cancer felt that their health deteriorated whilst they were waiting for their first hospital appointment. This is compared to 6% of patients with breast cancer and 6% of patients with malignant melanoma. (32) Not specific to people with head and neck cancer 83% of people with cancer are financially worse off because of their diagnosis. (13) An estimated 30% of people with cancer experience a loss of income as a result of their cancer, with those affected losing, on average, 860 a month. Additional costs and loss of income arise at different points in the cancer journey, but these figures show the financial strain that a cancer diagnosis can place on many families. (13) A 2012 survey found that 33% of people affected by cancer stopped working either permanently or temporarily. (13) 32

37 Understanding the numbers, needs and experiences of people affected by cancer Practical and information needs Emotional and psychological needs The cancer journey Diagnosis There are still significant delays in the diagnosis of head and neck cancer. In a 2011 study, people with oral and oropharyngeal cancer said that they lacked knowledge about this type of cancer, and therefore did not report to the doctor earlier. (34) 60% of head and neck cancer patients say they were given written information about the type of cancer that they had, and that it was easy to understand. This compares to 71% of cancer patients overall. (35) Not specific to people with head and neck cancer A significant proportion of newly-diagnosed patients undergoing cancer treatment have unmet needs. The most common needs include information needs, physical needs and psychological needs. The level of unmet needs is highest after diagnosis and at the start of treatment, and decreases over time. (10) The strongest preference for information at diagnosis is information about prognosis. However, there are also many other information needs such as side effects of treatment, impact on family and friends, altered body image, self care and risks of family developing the disease. (11) The way the diagnosis of head and neck cancer is given and the availability of information and support at this point is of the utmost importance to patients. However, a survey carried out by the National Cancer Alliance contains examples of insensitive communication by doctors, and the resulting distress for both patients and their partners. (23) Not specific to people with head and neck cancer Cancer affects people physically, emotionally and financially. However, the emotional effects are often the most neglected and last the longest even after treatment is finished. (37) Although a certain amount of emotional distress is common, particularly around the time of a diagnosis, around half of all people with cancer experience levels of anxiety and depression severe enough to adversely affect their quality of life. (37) 33

38 The rich picture on people with head and neck cancer The cancer journey Treatment needs and experiences TREATMENT Most head and neck cancers are treated by surgery, radiotherapy or a combination of both. Plastic or reconstructive surgery is also often needed for patients with these cancers. (23) What treatments do head and neck cancer patients get? Surgery Surgery is one of the main forms of treatment for head and neck cancers. The part of the mouth or throat that is affected may be removed depending on the exact location of the tumour. (39) The percentage of head and neck cancer patients treated within NHS hospitals in England with a record of major surgical resection varies depending on the site. Of all head and neck cancers, oral cavity cancer (71.4%) has the highest percentage of major surgical resections, whereas hypopharynx cancer (42.1%) shows the lowest proportion. (40) Radiotherapy Radiotherapy is an intensive form of treatment that uses high-energy rays to kill cancer cells. Head and neck cancers account for around 5% of all radiotherapy episodes in England ( ). There were 6,499 radiotherapy episodes and 151,858 radiotherapy attendances for head and neck cancers. (41) A study from the Oxford cancer intelligence unit suggests that in England almost half (47.4%) of head and neck cancer patients diagnosed between 2006 and 2008, received radiotherapy. (41) External beam radiotherapy is the most common way of giving radiotherapy to the head and neck area, but some cancers can also be treated by implanting radioactive material into the tumour and leaving it for several days. This is known as internal radiotherapy, or interstitial radiotherapy. (42) Chemotherapy Chemotherapy, a combination of anti-cancer drugs, is normally given at the same time as radiotherapy. This is known as chemo-radiation. Chemotherapy may also be given before chemoradiation treatment, which is known as induction chemotherapy. Very occasionally chemotherapy is given before surgery to shrink the tumour and make it easier to remove. (7) Biological therapy Biological therapies use substances that are produced naturally in the body to destroy cancer cells. Biological therapies like monoclonal antibodies and cancer growth inhibitors are sometimes used to treat head and neck cancers, and are mainly given as part of cancer research trials. (15a) Photodynamic therapy Photodynamic therapy (PDT) uses a combination of laser light of a specific wavelength and a lightsensitive drug to destroy cancer cells. In early stage cancer of the head and neck PDT may be used to try to cure the cancer and is usually given as part of research trials. PDT can sometimes be used to shrink an advanced cancer to reduce symptoms, but it cannot cure an advanced cancer. (15c) 34

39 Understanding the numbers, needs and experiences of people affected by cancer How many head and neck cancer admissions are there and how many head and neck cancer patients stay in hospital (and for how long)? In total, there were over 27,492 admissions to NHS hospitals in England (emergency and non-emergency) for head and neck cancers during (43) The median length of stay for head and neck cancer patients who were admitted was between 1-5 days (depending on the specific type of head and neck cancer) in (43) Research has shown that for all cancers (not head and neck specifically), those who are newly diagnosed or near end of life are much more likely to spend time in hospital. (45) What can a person with head and neck cancer expect from a typical treatment regime? Cancers affecting the head and neck are uncommon so people with this type of cancer are usually treated in specialist hospitals. This can mean that patients need to travel to receive treatment. Treatment for most forms of head and neck cancer has permanent effects on organs essential for normal activities like breathing, speaking, eating and drinking. As a result, many patients facing treatment require expert support before, during, and after treatment. Many are likely to need rehabilitation over a sustained period. (23) Head and neck cancers present special challenges because of the complexity of the anatomical structures and functions affected. A variety of professionals are involved in treating patients with these cancers, as part of a multidisciplinary team (MDT), including oral and maxillofacial surgeons or ear, nose and throat (ENT) surgeons, speech and language therapists, dietitians, and dentists or oral hygienists. (23) The cancer journey Treatment Surgery is one of the main forms of treatment for head and neck cancers, along with radiotherapy and chemotherapy. Very small cancers can often be treated with a simple surgical operation with no need to stay in hospital overnight. If the cancer is larger, surgery will often involve a hospital stay and an operation under general anaesthetic. (39) Sometimes the surgery may involve more than one part of the head and neck, and may cause scarring on the face or neck. Some people may need to have plastic or reconstructive surgery to their face. (39) Radiotherapy for head and neck cancers is usually given in combination with chemotherapy. This is known as chemo-radiation. This may be used instead of, or after surgery. Combined treatment is thought to be more effective than using either chemotherapy or radiotherapy alone. However, radiotherapy may sometimes be used alone if a person is not fit or well enough to have chemo-radiation. (44) 35