The Rich Picture on People Living with Prostate Cancer
THe Rich PiCtuRE
Simon, 46, living with prostate cancer
Understanding the numbers, needs and experiences of people affected by cancer 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 http://www.macmillan.org.uk/Richpictures or for further information please contact [email protected]
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.
Contents 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 booklets more helpful:
Understanding Understanding Understanding early (localised) locally advanced advanced prostate cancer prostate cancer (metastatic) M AC11639 M AC11685 prostate cancer M AC11686
All these titles are available in hard-copy by calling our Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am–8pm), or by ordering online at www.be.macmillan.org.uk. A wealth of other resources are also available, all produced by Macmillan Cancer Support and available free of charge.
Contents 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 Professionals/Services by cancer Contains specific examples Contains stories and quotes of our services across the from real-life examples of UK, and the impact they people affected by cancer are having. who have been helped by Macmillan.
Comms Platform Rich Pictures Impact Briefs Describes how to Describe the numbers, Generically describe communicate with people needs and experiences what our services do, affected by cancer. of key groups within and the impact they the 2.5 million have on people with people cancer. affected by cancer.
Local Cancer Intelligence Routes from Diagnosis A local overview of the essential Results from the first phase data on the changing burden of of the Routes from Diagnosis cancer in your area, including study, including outcome prevalence, survival, patient pathways, survival rates, experience and comparisons inpatient costs and morbidities across clinical commissioning associated with breast, lung, groups. prostate and brain cancers.
For further information about any of the above, please contact a member of Macmillan’s Evidence Department, or contact [email protected].
Contents Contents
Summary of people living with prostate cancer 2
What is prostate 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 64
1 Contents The rich picture on people with prostate cancer
summary of people living with Prostate cancer
Key stats Diagnosis Treatment
Prostate cancer is the most The most common symptoms Treatment options will common cancer in men. of prostate cancer include, depend on whether the A quarter of all new cases having to rush to the toilet cancer is contained within of cancer diagnosed in to pass urine, difficulty in the prostate gland (localised), men are prostate cancers, passing urine and passing has spread just outside of the with 119 men diagnosed urine more often than prostate (locally advanced) or every day in the UK.(6,7, 8,9) usual, especially at night. has spread to other parts of Summary of people living with prostate cancer (see page 24) the body (advanced).(40) Prostate cancer is the second most common cause of Men with early prostate 10% of prostate cancer cancer death in men in cancer are unlikely to have patients have a record of a the UK, and around 30 any symptoms, as these major surgical resection men die every day from only occur when the cancer is as part of their treatment.(39) prostate cancer.(10,11,12) large enough to put pressure on the urethra.(1) 26% of prostate cancer Three-quarters of prostate patients feel that the side cancer cases are diagnosed in First-degree relatives of effects of treatment are men aged over 65 years.(53) men with prostate cancer not explained well, which have a higher risk of being is below average for all Survival rates for prostate diagnosed with prostate cancer types.(47) cancer have been improving cancer than men without a over the last 30 years, family history.(see page 17) There is an under provision and now 80% of men in of Clinical Nurse England live for more than There is currently no Specialists for men with five years after their prostate national screening prostate cancer which means cancer diagnosis.(2) programme in the UK some prostate cancer patients for prostate cancer.(see page 24) are missing out on valuable information and support.(46)
Men with relatives 26% of prostate who have had cancer patients prostate cancer felt that the Prostate cancer is have a slightly side effects of the most common higher risk of treatment were cancer in men. being diagnosed. not explained.
2 Contents Understanding the numbers, needs and experiences of people affected by cancer
Survivorship End of Life Lifestyle & perceptions
People living with prostate Prostate cancer patients People living with prostate cancer have reported feelings who are at end of life report cancer can come from all of depression, anxiety, negative symptoms of pain, parts of society. Prostate stress, fatigue, and drowsiness, fatigue, cancer is the most pain following their initial depression, loss of sleep common cancer in men treatment, and side effects and anxiety.(87) and three quarters are such as impotence, erectile diagnosed over the age Summary of people living with prostate cancer dysfunction, sexual issues For people with prostate of 65.(53) and incontinence.(63) cancer who are at end of life, palliative care can help Active elderly people 43% of men with prostate alleviate symptoms and living in pleasant cancer are not given side-effects.(90) retirement locations are enough care and help well-represented amongst from health and social care Patients with prostate people being treated for professionals once they are cancer who receive earlier prostate cancer.(see page 48) at home.(76) palliative care have a better quality of life, Prostate cancer is a Prostate cancer patients longer survival and less well-known and highly may suffer a loss of self aggressive care at the end publicised cancer type confidence, which may be a of life compared to those and articles on prostate particular issue in the period receiving standard care.(4) cancer are often found in shortly after completion of UK national newspapers. primary treatment and this According to a 2004 (see page 56) loss of self-confidence may Macmillan report, 54% of be a significant barrier to all people with terminal cancer accessing support.(66) do not claim the benefits they are entitled to. This Many prostate cancer amounts to £126.5m.(92) patients feel abandoned by the healthcare system once their initial treatment has been completed.(76) 54% of all people with terminal cancer Long term side do not claim the effects are often benefits they are not dealt with. entitled to.
3 Contents The rich picture on people with prostate cancer
introduction to PrOstate cancEr What is prostate cancer What is prostate cancer?(1) Want to know more?
Prostate cancer is a malignant tumour that occurs Macmillan produces a wealth of information in the prostate gland, which is found only in men. about what prostate cancer is, its causes, The prostate gland is the size of a walnut and symptoms and treatment. Macmillan staff can surrounds the first part of the urethra which refer to reference (1) on page 58 for where you carries urine from the bladder to the penis. can find this information, or if you’re affected by cancer, call our Macmillan team on the number Early cancer of the prostate gland (early prostate below, or visit our website. cancer) is when the cancer is only in the prostate and has not spread into the surrounding tissues or to other parts of the body. It is also called Almost one in two of us will get cancer. localised prostate cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and Locally advanced prostate cancer is cancer loneliness that so many people experience that has spread into the tissues around the make it even harder. But you don’t have to go prostate gland. through it alone. The Macmillan team is with you every step of the way. Call the Advanced or metastatic cancer of the prostate Macmillan team free on 0808 808 0000 gland is when the cancer has spread beyond (Monday to Friday, 9am-8pm) or visit the prostate gland to other parts of the body. www.macmillan.org.uk
4 Contents ‘I was diagnosed with prostate cancer in 2005… I’d noticed something wasn’t right and went to my GP. Nobody expected it to be cancer as I was so young – only 37 years old, What is prostate cancer so it was a big shock to everyone. Because of my age, the treatment options available to me were limited and after 14 months of appointments and tests I finally gave in and had keyhole prostatectomy.
I have now been cancer free for 5 years, and face the daily challenge of living with the side effects of treatment. My life has changed utterly, in many unexpected ways, but not all bad. I now live a much less stressful and quieter existence, enjoying more those things that matter and make me happy, and letting go of those things that do not.’ Simon, 46
5 Contents The rich picture on people with prostate cancer
Macmillan’s aIMS AND
Macmillan’s aims and outcomes outcomes
Macmillan’s aims and outcomes How is this different for men – and how they are different with prostate cancer? for people with prostate cancer Macmillan is carrying out work internally to The estimated total number of people living with ‘baseline’ the 9 Outcomes, and we hope to cancer in the UK in 2015 is almost 2.5 million. be able to show how the 9 Outcomes vary Assuming that all existing trends in incidence and for different groups. This document will be survival continue cancer prevalence is projected updated when this work is complete. to increase to 4 million in 2030. Particularly large increases are anticipated in the oldest age groups and in the number of long term survivors. By 2040 77% of all cancer survivors will be at least 65 years old and 69% of cancer survivors will be at least 5 years from diagnosis.(58)
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 330,000 men were living with prostrate cancer in the UK in 2015.(3)
6 Contents 7 The for 9Outcomes living people with cancer Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding I was diagnosed I can enjoy life Those around Those me are well supported early
I’m inspired to give something back so Imake good community and and community I feel part of a part I feel I understand,I I am treated and respect and with dignity dignity with decisions
and care which are are which care and best for my cancer,best I get the treatment get I I know what Ican and who else can do to help myself I want to die well Contents and my life help me help
Macmillan’s aims and outcomes The rich picture on people with prostate cancer
THE facts on
Key factsKey and stats PrOstate cancEr
This section presents some of the key stats and facts relating to men with prostate cancer. You may benefit from referring 119 men are diagnosed with prostate cancer every day to the jargon buster on page 64 in the UK(6,7, 8,9) for details on some of the terms used in this section. 330,000 men were living with prostrate cancer in the UK in 2015(3) 93% of men in England live for more than one year after their prostate cancer diagnosis(2) 82% of men in England live for more than five years after their prostate cancer diagnosis(2) 30% men die every day of prostate cancer in the UK(9,10,11)
8 Contents 9 men are prostate cancers. all ofcancer new diagnosed cases in of Aquarter cancer in men in UK. the Prostate common most the cancer is 2012, incidence,Cancer UK, top 10 sites cancer year per (incidence)How many cancer get men prostate Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Uterus Kidney Bladder &Neck Head Melanoma Malignant Colorectal Prostate TracheaLung, &Bronchus Breast 8,617 9,524 10,702 11,152 Non-Hodgkin Lymphoma Non-Hodgkin 13,497 12,879 41,854 Contents 43,436 44,486 (6,7, 8,9) 8,9) (6,7, 51,079
Key facts and stats The rich picture on people with prostate cancer
How many men die from prostate cancer per year? (mortality)(10,11,12)
Cancer mortality, UK, 2012, top 10 cancer sites
Lung, Trachea & Bronchus 35,392 Key factsKey and stats
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
Prostate cancer is the second most common cause of cancer death in men in the UK, after lung cancer. Around 10,800 men die from prostate cancer each year in the UK, that’s around 30 every day.
10 Contents 330,000 11 oflatent,proportion earlier, slow-growing tumours. due to detection the years, 30 ofagreater partly rates have been improvingSurvival over last the Prostate common most cancer the cancer in is men. livingMen with prostrate cancer in in the UK 2015 (prevalence) How many living cancer? currently are men with prostate Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding (3) Contents
Key facts and stats The rich picture on people with prostate cancer
What are the key stats How many men get prostate cancer for England? per year in England? (incidence)(6) See data on incidence, mortality and prevalence for England 37,136 new cases of prostate cancer diagnoses in England in 2012. Key factsKey and stats
How many men die from prostate cancer per year in England? (mortality)(10) 9,142 prostate cancer deaths in England in 2012.
How many men are living with prostate cancer in England? (prevalence)(2) Around 280,000 men were living with prostrate cancer in England in 2015
What is the age-standardised* rate of incidence of prostate cancer in men in England?(13) *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 107 case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this new cases of prostate cancer diagnoses in England case the European Standard Population) to control for differences in in 2011 per 100,000 heads of population 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 mortality from prostate cancer in men in England?(5) 24 cases of prostate cancer deaths in England in 2011 per 100,000 heads of population
12 Contents 13 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding been expressed here as rates per 100,000 head of population. of head 100,000 per rates as here expressed been populations. Age-Standardised incidence and rates mortality have in differences for control to Population) Standard European the case this (in population astandard using weighted been has that a rate is Rate Age-Standardised The nations). UK different four the in case this (in areas different in rates mortality and incidence between comparisons fairer for allow to populations of structures age the in variation the eliminate to used are Rates *Age-Standardised prevalence Scotland for and onincidence, data mortality See for Scotland? are thekeyWhat stats 881 2,857 25 82 25,000 Around cancer in Scotland?cancer (prevalence) How many living are men prostate with in in 2012. Scotland deaths cancer prostate yearper in Scotland? (mortality) How many die men cancer from prostate in 2012.in Scotland diagnoses cancer of prostate cases new yearper in Scotland? (incidence) cancer How many get prostate men 2011 of population heads 100,000 per in in Scotland deaths cancer of prostate cases in Scotland? in men cancer from prostate mortality of rate age-standardised* is the What in 2011 of population heads 100,000 per diagnoses in cancer Scotland of prostate cases new in Scotland? in men cancer of incidence prostate rate age-standardised* is the What 2015. in were in livingmen cancer prostrate Scotland with (5) (5) (13) (13) Contents
(11) (12) (7)
Key facts and stats The rich picture on people with prostate cancer
What are the key stats How many men get prostate cancer for Wales? per year in Wales? (incidence)(8) See data on incidence, mortality and prevalence for Wales 2,419 new cases of prostate cancer diagnoses in Wales in 2012. Key factsKey and stats
How many men die from prostate cancer per year in Wales? (mortality)(10) 556 prostate cancer deaths in Wales in 2012.
How many men are living with prostate cancer in Wales? (prevalence)(12) Around 17,000 men were living with prostrate cancer in Wales in 2015
What is the age-standardised* rate of incidence of prostate cancer in men in Wales?(13) *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 107 case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this new cases of prostate cancer diagnoses in Wales case the European Standard Population) to control for differences in in 2011 per 100,000 heads of population 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 mortality from prostate cancer in men in Wales?(5) 22 cases of prostate cancer deaths in Wales in 2011 per 100,000 heads of population
14 Contents 15 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding * prevalence Ireland for Northern and onincidence, data mortality See Ireland?for Northern are thekeyWhat stats been expressed here as rates per 100,000 head of population. of head 100,000 per rates as here expressed been populations. Age-Standardised incidence and rates mortality have in differences for control to Population) Standard European the case this (in population astandard using weighted been has that a rate is Rate Age-Standardised The nations). UK different four the in case this (in areas different in rates mortality and incidence between comparisons fairer for allow to populations of structures age the * Age-Standardised Rates are used to eliminate the variation in in variation the eliminate to used are Rates Age-Standardised 262 1,024 22 101 7,000Around cancer in Northern Ireland? in (prevalence) Northern cancer How many living are men prostate with Ireland in 2012. in Northern deaths cancer prostate Ireland? (mortality) year in Northern per How many die men cancer from prostate Ireland in 2012.Northern diagnoses in cancer of prostate cases new Ireland?year in (incidence) Northern per cancer How many get prostate men Ireland in 2011 of population heads 100,000 per in Northern deaths cancer of prostate cases Ireland? Northern in in men cancer from prostate mortality of rate age-standardised* is the What Ireland in 2011 of population heads 100,000 per diagnoses in cancer of Northern prostate cases new Ireland? Northern in men in cancer of incidence prostate rate age-standardised* is the What Ireland in 2015Northern were in livingmen cancer prostrate with Contents (5) (5) (13)
(9)
(9) (12)
Key facts and stats The rich picture on people with prostate cancer
What proportion of men survive prostate cancer? (survival)(2)
Relative 5 year survival estimates, 2007-2011, by gender, England.
Testes 97.1% Key factsKey and stats Melanoma 85.5%
92.1%
Breast 85%
Hodgkin lymphoma 82.4%
86%
Prostate 81.7%
Uterus 77.4%
Cervix 67.3%
Rectum 57.1%
59.9%
Colorectal 56.5%
57.8%
Bladder 58.6%
49.1% Males
Females
16 Contents 17 of5year in rankings 22 the survival. This prostate puts cancer number at 5out of men are alive 5years their diagnosis). after rates ofall for cancers men (81.7%survival of Prostate highest one ofthe 5year cancer has Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Contents
Key facts and stats The rich picture on people with prostate cancer
How many men live beyond one year of their prostate cancer diagnosis?(14) Relative 1 year survival estimates, 2007-2011, by gender, England
Testis 98.1% Key factsKey and stats 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% Males 74.7%
Lung 31% 35.4% Females
An estimated 93.1% of men are alive one year after their prostate cancer diagnosis.(2)
18 Contents cannot accurately measured. be cancer prostate for times in median survival increase in trends tumours incidence of low stage and subsequent testing introduction ofthe PSA 19 youngermen. over men 50, and is rarely in found affects cancer.prostate cancer generally Prostate developing for factor risk strongest is the Age Age cancer? prostate for survival and prevalence mortality, incidence, in variations major the are demographic What 86%.at wererates markedly though, higher in USA the European the averagebelow of 56%. Survival England and Wales well over was just 40%, 1980s,late rate in survival average 5-year the in the widespread became testing PSA Before and Norway. Sweden many countries, including Canada, Australia, than rates survival cancer worse still has UK the overall, international show comparisons but that are in rates improving UK the survival Cancer internationally? compare rates survival How doUK testing. Antigen (PSA) Specific and Prostate (TURP), of prostate the resection earlier, slow-growing via transurethral tumours of latent, of proportion agreater detection the are rates due, survival cancer to in part, prostate High time years. six is now nearly median survival was year. one cancers figurespredict latest These all for time ago 40 years Overall median survival time since diagnosis?survival cancer median is prostate the What Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding (16) (25) (13) However due to to due However (15) (15)
any problems. particularly in elderly men, may never cause slowly and so, growcancers extremely small cancer. area of prostate of these Most of 108 out a have over of (80%) 80 age the men cells cancer some have within and their prostate half one ofApproximately all in men their fifties family getting prostate cancer. prostate family getting in of risk increase the men the may This gene present. be may gene also indicate afaulty that (especiallycancer of 40), age the before it could severalIf in women afamily breast had have • • likely if: man’s of risk developing is cancer more prostate likely a is thought that to It develop it themselves. are cancer slightly prostate had have who more relatives (a father, brother, or uncle) grandfather have who close men but identified been yet gene linked not has cancer A specific prostate to in family. the gene faulty cases) are to due an thought to inherited be (5-10% cancers A small of number prostate of history Family risk than the national thanrisk the average. White men. men generally Asian have a lower orthan diagnosed die cancer be from prostate to more times three likelyapproximately two to are men African and Black Caribbean Black UK, the In developing than others. cancer prostate ethnic groupsSome ahigher have chance of background Ethnic
family cancer. prostate had has sidemore same of man onthe than one the of 60 age the or under at cancer or brother prostate developed their father (1) Contents (1) (17)
Key facts and stats The rich picture on people with prostate cancer
What are the geographical ‘hotspots’ for prostate cancer incidence, mortality and survival?(18) Prostate cancer incidence UK, 2008-2010 Key factsKey and stats
Low
Medium
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 PCT/ Health Board level is via the NCIN Cancer e-atlas website, www.ncin.org.uk/eatlas, or Macmillan staff members can contact Macmillan’s Health Data team.
Prostate cancer incidence rates are higher in Wales and parts of Southern England, and lower in Scotland, Northern Ireland and the North. It is possible this is linked to variations in use of PSA testing.
20 Contents 21 IrelandNorthern and the North. and Devon, East South and lower in Scotland, rates are higher in the Prostate cancer mortality Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding to where men live men to where in UK. the according rates much variation to be survival not cancer appear in there does prostate present At Survival UK, 2009-2011 UK, mortality cancer Prostate High Medium Low Health Data team. Data Health Macmillan’scan contact members or Macmillan staff www.ncin.org.uk/eatlas website, e-atlas Cancer NCIN level Board is via the Health PCT/and the accurate at data detailed to very the Access in incidence and mortality. of variation broad patterns show maps only the These note Important Contents ,
Key facts and stats The rich picture on people with prostate cancer
Trends in the data Survival rates are improving:
What are the major trends? Survival rates for prostate cancer have been (Incidence/mortality/prevalence improving for 30 years. Earlier detection of or survival)(17) slow growing tumours via TURP and PSA testing (introduced in the late 1980s) has been linked Prostate cancer is the most common cancer to the increase in survival rates – by detecting Key factsKey and stats in men in the UK, and generally affects those tumours well before they might have been over 50. detected without screening. More effective treatment for early, aggressive and advanced Aside from age, family history and ethnicity prostate cancers is also thought to have are thought to the strongest risk factors for contributed to the improvement in survival rates.(4) developing prostate cancer.
By 2040 the total number of prostate cancer survivors is projected to have more than trebled to around 830,000 accounting for approximately 2–3% of the male population.(2)
Prostate cancer mortality rates are decreasing:
Prostate cancer mortality rates have decreased by around a fifth since the early 1990s. Between 1990-92 and 2008-2010, age standardised mortality rates decreased by 21% in men aged 45–54 years, 25% in 55–64 year-olds, 29% in 65–74 year-olds, and 25% in 75–84 year-olds. Overall mortality rates have increased by 2% for men aged 85+ in this period. It is thought this could be due to older men being less likely to receive radical treatment.(5)
22 Contents Understanding the numbers, needs and experiences of people affected by cancer Key factsKey and stats
‘Both my father and uncle had died from prostate cancer and so I asked for a PSA test. I had no other common symptoms of a diseased prostate, other than perhaps more frequent daytime urination.’
Alistair, 63
23 Contents The rich picture on people with prostate cancer
The cancer
The cancer journey cancer The 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 living with prostate cancer at these stages.
24 Contents 25 * • cancer, next? what IcompleteIf for my treatment • I’m diagnosed with cancer? to when me happens What ‘cancer showing journey’ fourA typical key stages: • • • • Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding this section largely highlights the post-treatment needs and experiences of people living with cancer. with living people of experiences and needs post-treatment the highlights largely section this (p39), Package Recovery bythe illustrated as post-treatment, and during both time the to relates Survivorship While often People
and often have rehabilitation have and often their initial (or treatments, subsequent) cancer survive increasing of number An people Screening more. to find out tests for patients can refer by cancer, caused be may that and aGP able to self-manage to be We support also know they need needs of survival. ontheir chances – this can effect ahuge have stage alate at theirhave diagnosed cancer people cancers, some and we know that However screening can only pick up some cancer. and neck routinely head for However screening is notavailable yet cancerous if notcould treated. become or find cellsin changes which stage early and/or their treatment. cancer of their cancer, effects late or long-term experience in this people stage Many post-treatment. Diagnosis Survivorship* aims to detect cancer at an at cancer aims to detect show signs and symptoms . and other and
• • • I’m for being cancer? treated when Iexpect can What • mightwhat Iexperience? is incurable, myIf cancer
last year of life year last ofEnd life in generally those the means significant illnesses. treatment-related have of year life. people oflast these Many as the person moves to closer death. person the as personalised to each patient. to each personalised treatment regimes can varying have types cancer Different spread. it has and whether it is in body the of it is, cancer where type onwhat depending treated canCancer be incurable cancer incurable Progressive with illness includes people Treatment and end of life of end and Progressive illness . Needs often get greater greater get often . Needs , but not those in not those the , but , and treatment is , and treatment Contents in different ways ways in different
The cancer journey The rich picture on people with prostate cancer
needs and experiences diagnosis
What are the top 3 signs and prominent in lower socio-economic groups symptoms of prostate cancer? and practical barriers (eg ‘too busy’) are more (19) The cancer journey – Diagnosis prominent in higher socio-economic groups. 1. Having to rush to the toilet to pass urine 2 Difficulty in passing urine How well does screening work 3. Passing urine more often than usual, for prostate cancer? especially at night There is currently no national screening How good are we at early diagnosis? programme in the UK for prostate cancer. How aware are people of signs and symptoms? How aware are GPs of Prostate specific antigen (PSA) was introduced signs and symptoms? as a diagnostic test for prostate cancer more than 20 years ago. However, there is continuing Men with early prostate cancer are unlikely to debate regarding its utility in diagnosis for have any symptoms, as these only occur when prostate cancer. PSA is a protein produced by the cancer is large enough to put pressure on the the prostate and men with prostate cancer tend urethra. In men over 50, the prostate gland often to have more PSA in their blood, however, PSA gets larger due to a non cancerous condition levels get higher as men get older.(20) known as benign prostatic hyperplasia (BHP).(1) Mass testing is costly and may result in The symptoms of both benign enlargement of the unnecessary diagnosis and treatment. The prostate gland and malignant tumours are similar.(1) evidence of a subsequent reduction in mortality is also inconclusive. Although the evidence is Patients with cancer in the UK tend to present with contradictory, PSA is still an important tool for more advanced disease and have poorer survival monitoring patient progression following rates than many of their European counterparts. The treatment of definitive localized prostate cancer.(20) most likely explanations are either late presentation by patients or late onward referral by GPs.(19) Also, many men diagnosed with prostate cancer have very slow growing cancers that will never Four out of five men at higher than average risk cause any symptoms or problems in their of prostate cancer are not aware of their risk. In lifetime. Unnecessary cancer treatment can cause addition, three quarters (75%) of men at greater side effects such as impotence and incontinence risk admit that, even if they were aware but didn’t that may greatly reduce their quality of life.(21) have any symptoms, they wouldn’t go and speak to their GP about it.(101) Despite there being no national screening programme, there is a Prostate Cancer Risk The most commonly endorsed barriers to seeking Management Programme organised by the medical help with potential cancer symptoms are; NHS, whose aim is to ensure that men who are difficulty making an appointment, worry about concerned about prostate cancer receive clear wasting the doctor’s time and worry about what and balanced information about the advantages would be found. Emotional barriers are more and disadvantages of the PSA test.(22)
26 Contents ‘ 27 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Daniel, 62 Daniel, would go on for almost ayear.’ Doctor. on apath Iset that off I decided it was time to see the up during the night often, as times an hour, and getting loo much as three as or four about the need to go to the moaningAfter to my wife Contents
The cancer journey – Diagnosis The rich picture on people with prostate cancer
How is prostate cancer diagnosed? (Routes to diagnosis)(23)
Emergency 9% GP
The cancer journey – Diagnosis 42% Other 49%
‘Other’ includes screening, 2 week wait GP referrals where there is a suspicion of cancer, in-patient and out-patient routes, ‘death certificate only’ diagnoses, and ‘unknown’ routes.
10% of people newly diagnosed with prostate cancer were diagnosed via the emergency route. This is significantly lowers than the average for all cancers (23%). This is indicative of increased detection of abnormalties through the widespread use of the PSA test.
28 Contents there is stillthere is significantroom for improvement. they were diagnosed. most, than better Although cancer 24% before they were diagnosed?twice to see had their more than patients GP How many cancer prostate 29 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Breast Skin Urological Prostate Neck and Head Gynaecological Colorectal Gastro-Intestinal Upper Lung Other Sarcoma Haematological System Nervous Brain/Central of people newly diagnosed with prostate diagnosed ofpeople prostate newly with before before tohad see their twice more than GP 8% 10% 22% (24) 24% 26% 28% 31% 32% 32% Contents 35% 36% 37% 39%
The cancer journey – Diagnosis The rich picture on people with prostate cancer
How does stage at diagnosis relate to probable survival rates?(25)
The impact of Stage at Diagnosis on Survival – prostate cancer
Localised 94%
Locally advanced and metastatic 28%
The cancer journey – Diagnosis NB: This data reflects 5 year survival rates.
The later the stage at diagnosis, the poorer the chances of survival – in other words early diagnosis and treatment of prostate cancer saves lives.
30 Contents Understanding the numbers, needs and experiences of people affected by cancer
How long do people with prostate cancer have to wait to be referred?(26)
According to recent data, 95% of patients with suspected prostate cancer were seen by a specialist within 2 weeks of referral. This is relatively good performance; however patients with suspected
breast cancer and lung had a slightly stronger The cancer journey – Diagnosis performance.
31 Contents The rich picture on people with prostate cancer
Physical Financial and medical needs
The cancer journey – Diagnosis needs
Not specific to people with Not specific to people with prostate cancer prostate cancer Often at diagnosis men experience few physical According to a 2013 Macmillan report, or medical needs. Prostate cancer differs from four in five (83%) people are, on average, other cancers in the body as small areas of £570 a month worse off as a result of a cancer within the prostate are common and may cancer diagnosis.(51) stay dormant for many years. Approximately half of men in their fifties have some cancer Reduced income is a major factor of financial cells within their prostate. Most of these cancers hardship It is estimated that 30% of people grow extremely slowly and so, particularly in old with cancer experience a loss of income as men, may never cause any problems.(1) a result of their cancer, with those affected losing, on average £860 a month. Additional Diagnosis is sometimes delayed because costs and loss of income arise at different points people are uncertain about what is ‘normal’ in the cancer journey, but these figures show the and may delay seeking medical advice.(27) financial strain that a cancer diagnosis can place on many families.(107)
Amongst households which do suffer a loss of income, the average drop in income is 50%. This shows the financial strain that a cancer diagnosis can place on many families.(28)
In a 2013 survey, of the people with prostate cancer who said they wanted it, only 40% of them were given information on financial help or benefits by hospital staff, compared to an average (for all cancers) of 54%.(24)
Over two-fifths (42%) of people with cancer did not receive money or debt advice following their diagnosis.(107)
32 Contents c Pra 33 diagnosis is information prognosis about information for at preference strongest The of familyand risks developing disease. the family image, and friends, altered body care self on impact of treatments, and include side effects extensive are diagnosis at needs Information tohardest find. emotions, relationships and social situations is the their illness and information onhow with to deal into until late of support unaware being cancer) by are prostate frustrated at affected by (not cancer people just affected people Many given too much. were not given and said enough 2% they were their condition and treatment; 10% said they given right the amount of information saidthey were that patients of cancer 88% cancer prostate with people to specific Not 71%. being average all for the with types cancer cancer their about information written received cancer 81% survey same the In prostate with of people results. explanation of their test understandable do not receive acompletely patients cancer prostate 22% that of This however suggests types. cancer results test their explanation of completely understandable a received they said cancer prostate with A 2013 78% that found of people survey n in Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding e . This was the highest for all cancer types, all for . This types, highest was cancer the f o d t (32) rm (24) s . This is comparable to other . This is comparable to other i ca a l t a i
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n ps Emo to practical and physicalto practical effects. worried about the loss of sexual function. of sexual loss the about worried to be old' they would considered 'too be they feel embarrassed time are not always addressed at the appropriate issues psychosexual patients cancer For prostate their diagnosis their before felt they than lonely, lonely more or 15% feeling report patients cancer of prostate cancer prostate with people to specific Not affect their quality of life. their quality affect and depression levels of anxiety experience (all types) cancer diagnosis, around half cancer of with all people is common, around time the of particularly a amount of emotional distress acertain Although the the are cancer of aspects emotional the that say than four in (45%)More ten cancer with people and and inter-personal relationships, hopelessness include of diagnosis acancer psychosocial impacts The receive any advice or support or any advice receive 75% anxiety suffer looked are after. notemotional adequately needs their cancer) feel prostate not just types, cancer (all cancer with diagnosed of58% people most difficult to cope with cope to difficult most e mental illness. for the patient. Older patients are often too too are often patient. patients the for Older y reduced quality of life, poorer of life, poorer quality reduced c d t ho s to raise psychosexual concerns as as to raise concerns psychosexual i . (50) severe to enough adversely o and 85% and (38) (38) l l na ogic (36) Contents
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The cancer journey – Diagnosis The rich picture on people with prostate cancer
needs and experiences TREATMENT
Percentage of patients who had major surgical resection, 2004-2006 (39)
The cancer journey – Treatment – journey cancer The Uterus 84%
Breast 83%
Colorectal 66%
Kidney 60%
Ovary 59%
Cervix 45%
Oesophagus 16%
Stomach 15%
Prostate 10%
Bladder 10%
Lung 14%9%
Pancreas 8%
Liver 6%
10% of prostate cancer patients had a record of a major surgical resection as part of their treatment.
34 Contents 35 cancer cells. gland minutes a time at to afew for destroy source of radiation high-dose into prostate the (temporary brachytherapy), involves a inserting brachytherapy (HDR) rate dose High cells in prostate. the cancer glandinto destroys to prostate destroy the involves implanted tiny having seeds radioactive brachytherapy) is a form of radiotherapy which Permanent seed brachytherapy (radioisotopes). radiotherapy internal and radiotherapy: radiotherapy beam external (EBRT) of palliative types are There two growth. its it can help to but rid of cancer slow the get down radiotherapy). Palliative radiotherapy not does radiotherapy to help relieve (palliative symptoms have may cancer prostate advanced with Men growing. them stop cells cancer the to and damage X-ray beams radiotherapy beam External uses high energy Radiotherapy cancer.prostate in major their received for surgical resection around and 2006, 1in 10 2004 men Between within it. gland contained cancer and the prostate the is an to operation removeRadical prostatectomy prostatectomy radical Surgery: aggressive cancer. less in with men treatment problems, in order to avoid unnecessary or delay is not causing that cancer any or symptoms is of away surveillance monitoring prostate Active never within harm cause may aman's lifetime. slowly and grows very often cancer Prostate waiting’ surveillance/‘Watchful Active (advanced).body of the to parts other spread oradvanced) has (locally of prostate the outside just spread has is gland contained within (localised), prostate the Treatment cancer the onwhether options depend get?patients cancer doprostate treatments What Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding (39) (40) (low rate dose ,
available NHS. onthe is not widely yet but in use for UK licensed the (Taxotere®).medicine docetaxel is Cabazitaxel to hormone therapy and the chemotherapy responding stopped has that cancer prostate chemotherapy treatment for men with advanced of is type (Jetvana®) anew Cabazitaxel and not to cure cancer. prostate to help cells. is controlcancer used It symptoms to kill drugs Chemotherapy anti-cancer uses Chemotherapy therapy. responding tono longer hormone and is to bones the spread has cancer prostate relieve but cancer prostate paintreat when do are not actually that drugs Bisphosphonates Bisphosphonates cancer.prostate help and control not to cure symptoms to is used It therapy hormone other treatments. responding to cancer) stopped and has prostate (advanced of body the to parts other spread has cancer prostate therapy whose men for of hormone Abiraterone (Zytiga®) is type anew cancer. advanced prostate with men for cells.main iscancer the It treatment reaching prostate the testosterone stopping or of testosterone production by the stopping therapy helps control cancer Hormone prostate Hormone therapy up to 10% of their time in hospital. over 10% spent Just patients cancer of prostate in hospital (and for how long)? stay patients cancer many prostate howadmissions and there are cancer How many prostate radiotherapy or brachytherapy. with treatment after back come has cancer prostate commonly an whose option men for gland.in is most prostate the Cryotherapy freezing and thawing to kill the cancer cells by cancer using prostate treats Cryotherapy Cryotherapy (40) Contents (41)
The cancer journey – Treatment The rich picture on people with prostate cancer
Those who are newly diagnosed or near end of life CNSs provide patients with essential care and support are much more likely to spend time in hospital.(41) including the provision of comprehensive information, support with making complex treatment decisions, In total, there were over 56,656 admissions advice on managing side effects, and emotional and to NHS Hospitals in England for prostate cancer psychological support.(46) during 2012–13.(42) A survey on prostate cancer patients experiences of Around 10% of prostate cancer patients were CNSs indicated that patients who saw a specialist admitted through the emergency route. This is nurse had more positive experiences of receiving similar to the average for all cancers.(42) written information about tests and treatment, and about sources of advice and support, and were
The cancer journey – Treatment – journey cancer The The median length of stay for prostate cancer more likely to say they made the treatment decision patients who were admitted to hospital was themselves. Two key aspects of the specialist nurse 2 days in 2011–2012.(42) role were seen as important: their availability to the patient, and their ability to liaise between the What can a person with prostate patient and the medical system.(48) cancer expect, therefore, from a typical treatment regime? What other health conditions do people with prostate cancer have? How does If the cancer is contained within the prostate this affect their treatment, survival, long gland then there are treatments available that term effects or experiences? aim to get rid of the cancer completely, such as surgery to remove the prostate or radiotherapy. Just under half (49%) of all people living with If the cancer has spread outside of the prostate cancer (of all cancer types) have at least one other gland then treatment is usually aimed at chronic condition. This includes 15% who have two, controlling the cancer or managing symptoms.(40) and 6% who have three other chronic conditions.(49)
How many people with prostate Many of the treatments for prostate cancer cancer have access to a prostate CNS? have significant side effects that have a long term impact on quality of life. For example the There are around 280 prostate cancer clinical most common side effects of treatment include nurse specialists (includes data for all Urology urinary incontinence, bowel incontinence, cancer patients).(44) erectile dysfunction, loss of sex drive, fatigue, and depression. Side effects such as these have Modelling work by Frontier Economics has a considerable impact on quality of life and can indicated that a further 209 prostate CNSs are make decisions about treatments difficult.(46) required to fully meet the demand in England.(45)
What does this mean for patients? Macmillan has produced an 'Impact Brief on Clinical Nurse Specialists'. This is an evidence Currently, there is under provision of CNSs for review, which more fully sets out how our men with prostate cancer compared to some CNSs use their skills and expertise in cancer other common cancers, this means some care to provide technical and emotional prostate cancer patients are missing out on support, coordinate care services and to valuable information and support.(46) inform and advise patients on clinical as well as practical issues, leading to positive patient 87% of prostate cancer patients were given the outcomes. The paper, along with other Impact name of a CNS, compared to 93% of breast briefs, is available via the Macmillan website, cancer and 91% of lung cancer patients. This is at www.macmillan.org.uk/servicesimpact below average for all cancer types (88%).(42)
36 Contents Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Treatment – journey cancer The ‘Before all this, I didn’t even know what the prostate was. I was plunged into a world of treatment: three months of hormone therapy, five and a half weeks of radiotherapy, a brachytherapy operation, and then a further nine months of hormone treatment.’
James
37 Contents The rich picture on people with prostate cancer
Physical Financial and medical needs needs The cancer journey – Treatment – journey cancer The
Not specific to people with Not specific to people with prostate cancer prostate cancer A 2009 report found that experiences of patients Some of the additional costs incurred at with prostate cancer tend to be less positive treatment stage for cancer patients and than the other patient groups. They have longer their carers is travel to and from hospital. waits for treatment, are more likely to have first The average number of trips is 53 at a cost appointments postponed or cancelled, and to of £325 per trip in 2006 prices.(54) report that their carers have not been involved or given the right amount of information.(43) A recent Macmillan report on the financial burden of cancer, found that costs related directly However prostate cancer patients on average to treatment, notably hospital travel/parking have the greatest choice of treatment (90%) were a particular burden to those with long in comparison to all other cancers.(50) journeys and/or on low incomes.(107)
Around 26% of men with prostate cancer report A 2013 survey found that 27% of prostate some or extreme pain and 22% report cancer patients who wanted to know were not problems with mobility. Treatment is informed of free prescriptions.(24) significantly associated withboth problems.(78)
A 2013 survey found that 27% of people with prostate cancer thought GPs and nurses at their local practice could have done more to support them while they were having their treatment.(24)
The same survey found that confidence in ward nurses was relatively high amongst prostate cancer patients (74%) however, this implies that 26% of patients did not have confidence in the ward nurse who treated them.(24)
38 Contents and uncertainty and which in resulted their confusion treatment c Pra were were 16% experience with other patients. options fewer have to share their patients cancer groups. prostate This that shows on support information received of which 88% patients cancer groups help self and were given informationpatients on support 84% survey same the In 39 of life. quality their on will cancer impact prostate for how treatment the not understanding report in men particular Older common cancers. other with to compared gone 13% had treatment of patients preferred 20% groups. ethnic minority especially amongst diagnosis are widespread, and treatment Misunderstandings given. information provided and support of of in level terms and quality patients cancer of NHS experience aworse report cancer prostate with Men n in explained not were of treatment effects side the that felt a2013In 26% survey Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding of prostate cancer patients felt that they they that felt patients cancer of prostate given conflicting information conflicting given e would have would have patients cancer of prostate f more information onhow their o well. d t rm (24) s . (59) (59) i
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The cancer journey – Treatment The rich picture on people with prostate cancer
needs and experiences Survivorship (post-treatment)
The cancer journey – Survivorship Why are cancer survivors (all cancer • One in six people (17%) who were diagnosed survivors; not just cervical cancer with cancer more than 10 years ago have not survivors) not catered for properly been visited at home by a friend or family by the current system? member for at least six months. (67)
The current system for cancer patients after the end Cancer survivors have greater health of treatment concentrates on medical surveillance, needs than the general population and looking for recurrence. However we know that this does not address people’s needs: • 90% of cancer survivors have visited their GP and 45% visited a specialist doctor in • Some feel a sense of abandonment the last 12 months. This compares with after treatment.(43) 68% and 15% of the wider population.(106)
• 39% who completed treatment in 2009/10 • In a recent survey, 80% of gynaecological cancer say that no health or social care professional patients, and 78% of all cancer patients, said talked them through the needs they that they were not offered a written assessment might have. (37) or care plan. These are essential in providing personalised care for cancer patients and • 94% experience physical health condition their carers. (3) problems in their first year after treatment. (62) Macmillan and NHS England • 78% of people with cancer have experienced at are working to implement least one physical health condition in the last 12 months which can occur as a result of cancer personalised support for all or its treatment.(62) cancer survivors
• 62% of people with cancer have experienced The National Cancer Survivorship Initiative (NCSI) at least one of the psychological conditions was a partnership between the Department that can occur as a result of cancer and its of Health, Macmillan and NHS Improvement. treatment.(62) NCSI reports were produced in 2013, including ‘Living with and beyond cancer: Taking • 40% with emotional difficulties hadnot sought Action to Improve Outcomes’, which informs medical help or other support. (43) the direction of survivorship work in England, to support commissioners, health service providers • 23% lack support from friends and family and others to take the actions necessary to drive during treatment and recovery (67) improved survivorship outcomes.
40 Contents Permission granted for use as seen, this notice must remain intact in all cases. All rights reserved. rights All cases. in all intact remain must notice this seen, as use for granted Permission 2013 Support Cancer ©Macmillan Copyright • • of: consisting Package’ whichA key ‘Recovery is the intervention by cancer. include: These affected to people England, and could make an immediate difference across spread and are to be ready tested been survivorship,about have including that interventions learned been has what out set documents The guide”’ to’ A“how cancer: beyond or with living people for care of to implementation: Stratifiedpathways was followed document The by: ‘Innovation 41 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding short- and long-term consequences. and long-term short- treatment,information about potential and the carecommunication including to primary to provideTreatment good Summary planning, care and Assessment Needs Holistic Structured .
• • include: key interventions Further • • appropriate programmes. and howweight to access management advice on physicalOffering activity, support financial and services rehabilitation vocational specialist to referral onwards needs work support information about appropriate information including Offering following months six adiagnosis of cancer Care Cancer by GP out the ReviewThe carried and financial support. benefits to work, back of recurrence,symptoms getting choices, signs and lifestyle information about and Wellbeing Clinics, which give patients events, such Health as Education and support Contents
The cancer journey – Survivorship The rich picture on people with prostate cancer
Physical Financial and medical needs needs The cancer journey – Survivorship Men living with prostate cancer report high levels 60% of prostate cancer patients were not of unmet sexuality-related need. Younger given information on financial help or benefits men with a good prognosis following curative by hospital staff. (110) treatment are more greatly affected.(78) Some cancer patients (not just prostate cancer Many people living with prostate cancer feel that specific patients) donot know that they can there is little their GP could do for them as they claim benefits, even at a time when they have were too ‘generalist’ and feel that there is a lack completed initial treatment and may feel more of continuity of care.(67) able to deal with their financial issues.(69)
Older people living with prostate cancer Not specific to people with (over 75 years) have a greater hospital use.(66) prostate cancer Some people affected by cancer (not just people A 2010 report found that men are rarely invited affected by prostate cancer) find benefits claim to discuss psychosexual side effects within follow forms complicated. Benefits advice is also up appointments and lack of rapport with health not always offered in a timely fashion and care professionals make it difficult to raise they are ashamed to seek advice, even those problems themselves.(37) who are seriously ill, and lifetime tax payers feel stigma in claiming financial help.(69) Not specific to people with prostate cancer Although cancer results in substantial increase Although people living with cancer (not prostate in sick leave, a substantial number of prostate specific) describe ongoing needs for information cancer patients return to work within 1 year and support that could potentially be provided after the cancer diagnosis.(70) by GPs, they report little involvement by GPs in their care. In addition, GPs are perceived A 2009 report found that of those who were the by patients as lacking the necessary expertise in main income earners in their households prior cancer management.(66) to a cancer diagnosis, (26%) were no longer the main earners after treatment.(71) A recent survey revealed relatively poorer health and well-being and relatively higher use of hospital services among individuals who had a former cancer diagnosis when compared with individuals who had no cancer diagnosis.(66)
42 Contents c Pra condition side and possible effects. information the with specific) cancer were dissatisfied prostate (not recurrent with disease of men the Many 43 some. for treatment it was as great as duringnot be diagnosis and may treatment post information for The need professionals. care social they are and from once home health at support are not given patients care enough cancer or 43% completed. of prostate been has cancer for healthcare their system once initial treatment by the abandoned feel people Many cancer prostate with people to specific Not n in with worries about spread or recurrence. spread about worries with changes, and help lifestyle and information about of complaint are information lack of the genetic and lifestyle changes they should make. changes and lifestyle diagnosis, themselves after includingafter diet what and to know how to look care health in their role specific) cancer active would like amore to have living (notHowever cancer with people prostate at recurrence. information, there is unmet need suggesting supported they said received that surveyed those arecurrence,For experiencing those only half of Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding e f o d t rm (72) s they received about their medical their medical about they received i
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n ps Emo issues and incontinence.issues sexual a result of impotence, dysfunction, erectile cancer. prostate can with occur as factors These factors psychosocial and fatigue, pain stress, anxiety, Depression, anxiety or depression anxiety moderate or extreme third reporting of men cancer, a under just despite prostate with living well in men managed or assessed being not currently is distress Psychological improve even six months later months evenimprove six For of recurrence fear and needs psychological are needs unet reported frequently most The treatment finishing after needs unmet 30% cancer prostate with people to specific Not support accessing to a significant barrier be may and this of self-confidence loss treatment completion of primary after shortly in period the self confidence a also may suffer patients cancer Prostate volume of prescriptions. of life end highest the receive the nearing Those receive a prescription for an antidepressant likely living to more cancer are prostate with people patients, cancer toCompared colorectal 60% e five or more five ormore report cancer with of people y of these patients the situation does not situation does the patients of these c d t ho s i , which may be a particular issue issue aparticular be , which may o l l na (77) (77) . (63) (78) ogic Contents
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The cancer journey – Survivorship The rich picture on people with prostate cancer
needs and experiences progressive The cancer journey – illness and
Progressive illness and end of life end of life How many prostate cancer patients A recent study found that home, hospital, and are at End of Life? inpatient specialist palliative care significantly improved patient outcomes in the domains of Approximately 10,000 prostate cancer patients pain and symptom control, anxiety, and reduced are at end of life, and 2,600 are within one year hospital admissions.(29) of diagnosis.(80) The National Institute for Clinical Excellence What health data do we have (NICE) has defined supportive and palliative care on prostate cancer patients with for people with cancer. With some modification progressive illness? the definition can be used for people with any life-threatening condition: Palliative care is the It is estimated that around 1 in 220 new active holistic care of patients with advanced cancer diagnoses in the UK are associated progressive illness. Management of pain and with radiotherapy for a previous cancer.(81) other symptoms and provision of psychological, social and spiritual support is paramount. The It is estimated that around 5% of these goal of palliative care is the achievement of radiotherapy related second cancers follow the best quality of life for patients and their a prostate cancer diagnosis.(81) families. Many aspects of palliative care are also applicable earlier in the course of the illness in What is the impact of giving patients conjunction with other treatments. palliative care? Where do people with cancer die? Where do people with cancer die?(83)
Palliative care provision for cancer patients Data on place of death is not available broken can improve quality of life and reduce health down by cancer type. However for all cancers, care costs. As cancer is detected earlier and its we know that cancer deaths in England & Wales treatments improve, palliative care is increasingly account for 90% of all deaths in hospices, 39% of playing a vital role in the oncology population. all deaths at home, 23% of all deaths in hospital, Palliative care entails an expert and active 18% of all deaths occur in care homes, 19% of assessment, evaluation and treatment of the all deaths in communal establishments and 23% physical, psychological, social and spiritual needs of all deaths elsewhere. of patients and families with serious illnesses. It provides an added layer of support to the For further information, visit the (82) patient's regular medical care. National Council for Palliative Care website, www.ncpc.org.uk
44 Contents 45 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Where did people with cancer die didWhere in with people cancer 2011?* (83)
18% 13% 30% 38% Hospice (own residence) Home Hospital nursing home Care and * due to rounding. to due 100% to up add not Does Contents
The cancer journey – Progressive illness and end of life The rich picture on people with prostate cancer
To what extent do prostate cancer patients die in the place of choice?
A recent survey found that 73% of people who died from cancer would have liked to have spent the last weeks and days of their life at home.(34) However, only 30% of those who die from cancer actually die at their home or own residence.(33) The cancer journey –
In terms of dying in the place of choice, only around one in five people (or fewer in many local authorities) are supported to die in their Progressive illness and end of life own home. If these trends are to continue over 500,000 people in England will die in a place other than their own home by 2015, suggesting that more needs to be done to ensure that people’s wishes about where they want to die are met.(85)
46 Contents Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Progressive illness and end of life ‘I keep wondering what will happen to me when I’m left behind, what’s going to happen to me? But we are doing as much as we can together to enjoy our time while he is still here.’
Marilyn, 67, wife of Phillip living with prostate cancer.
47 Contents The rich picture on people with prostate cancer
Physical Financial The cancer journey – and medical needs needs Progressive illness and end of life Metastatic prostate cancer is incurable, and Not specific to people with the disease and other co-morbidities, as well prostate cancer as side effects from treatments, can be very According to a 2004 Macmillan report, 54% of disabling for patients, particularly the elderly.(86) all people with terminal cancer (not specifically prostate cancer) did not claim the benefits they Advanced prostate cancer patients report negative were entitled to. This amounts to £126.5m.(92) symptoms of pain, drowsiness, fatigue, depression, loss of sleep and anxiety.(87) A recent study found that advanced stage at diagnosis, being older at diagnosis, and higher A recent study found that 53% of men with comorbidity were associated with increased prostate cancer at the end of life used a costs. The financial burden is also highest around hospice for a median of 24 days. Hospice two events, cancer diagnosis and death.(93) care has been found to improve symptom management, quality of death and quality of life. Men who enrolled in a hospice are also less likely to receive high-intensity care, including intensive care unit admissions, inpatient stays, and multiple emergency department visits.(88)
Not specific to people with prostate cancer More than one-quarter of patients with cancer (not prostate specific) experienceserious pain 3 to 6 months before death and more than 40% were in serious pain during their last 3 days of life.(91)
Various symptoms are very common in advanced cancer (not prostate specific), with patients having a median of 11 symptoms on admission to palliative care.(90)
Pain relief is not dealt with very effectively at home. 37% of cancer carers felt that pain was only partially relieved in the last three months of their loved ones lives whilst at home.(83)
48 Contents c Pra access access economically are disadvantaged all likely less to not married, lacking in care home or socio- are who older,Those male, from ethnic minorities, 49 to do.used frustration fears a with dealing in were highest needs Patients' specific medical communication/information domains. in relation toareas of psychological need and the greatest identified patients that found specific) into (not cancer advanced prostate study A recent cancer prostate with people to specific Not unmet. often are information, needs these yet for also cancer needs have prostate with of men throughout their journey, cancer partners and the behaviours and information-seeking needs information distinct have cancer prostate with Men n in Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding e about the cancer spreading, cancer the about and coping with lack of energy and tiredness and of energy lack community palliative care services. care palliative community f o (95) (95) at not being able not being to at things do the they d
t rm s i ca a l t a i
on nd , coping with , coping with (96) (96)
(94) (94) n ps Emo 59% amongst those receiving palliative receiving those 59% amongst care. finished, just have This treatment. to cancer rises is 25% are who undergoing, among those or overallthe distress prevalence of psychological (not all specific) patients cancer prostate Amongst cancer prostate with people to specific Not palliative goals. focus of the their care fromredirected curative to use hospice more toward trended spirituality greater with Men talk to needs their satisfy not did professionals help their for they received pain, healthcare of treatment, and pain. anger Although effects highlighted problems side- with particular progressive with of illness men A study e with someone about their cancer. about someone with y c d t ho s (98) i o l l na ogic Contents , suggesting that they they that , suggesting a
(43) a nd l (97) (97)
The cancer journey – Progressive illness and end of life The rich picture on people with prostate cancer
lifestyle and percePtions Lifestyle and perceptions and Lifestyle This section attempts to give an What is the demographic breakdown/ indication of the typical profile market segmentation of the over of people living with prostate 330,000 people living with prostate cancer in the UK?(3) cancer, however we know that there is huge variation within We have analysed England hospital episode the population. This section also statistics and compared this to the general population to see which MOSAIC* groups and provides insight into perceptions types are more prevalent amongst prostate about prostate cancer. cancer patients attending hospital. We believe the correlations seen in England will be broadly What is the profile of the average similar to those seen in the other three UK nations, person living with prostate cancer? and so this insight could be applied UK-wide.
• Prostate cancer is the most common cancer Amongst prostate cancer patients, the following in men. A quarter of all new cases of cancer MOSAIC* group shows significantly greater than diagnosed in men are prostate cancers.(53) average representation:
• The majority of prostate cancer patients are Group E: Active Retirement (active elderly White however Black Caribbean and African people living in pleasant retirement men are approximately two to three times more locations): People in Group E are mostly likely to be diagnosed than White men.(53) people aged over 65 whose children have grown up and who, on retirement, have decided to • Three quarters of prostate cancer cases are move to a retirement community among people diagnosed in men aged over 65 years.(53) of broadly similar ages and incomes. Most of these people have paid off their mortgages on their family home and now live in a bungalow or country cottage.
For some, the move to a rural or coastal location is an opportunity to make a new start and explore new places. Most people in this group will have the benefit of a company pension and many will have access to savings. Others may be on lower state pensions, and may struggle with rising utility bills.
In addition to Group E, the following MOSAIC* groups shows greater than average representation amongst prostate cancer patients:
50 Contents • • • patients: cancer prostate amongst Heritage) M(Industrial Type one Group and within Types Town D (Small within Group Diversity) additionIn to above the Groups, there are two home, or adown-sized property. accommodation,sheltered their own family of home, includingvarious nursing types homes, to live tend on low They incomes. pension in are of them in their Most 70s, or 90s. 80s are people of these andhouse garden. Most family the of looking after responsibility the with struggling be are may usually who pensioners People in support): Group L state on reliant people (elderly Needs Elderly L: Group their careers. or starting are university at spacious family home. children have Many who and are living married in a Most careers. in or 60s, and can successful be their 40s, 50s Oftenin and asignificantbase. financialasset worked lifestyle hard to build up acomfortable have who classes executive and managerial homes):rural semi- or in suburban living professionals (successful Rewards Professional B: Group own their of homes. them Most or, population is married the if single, widowed. jobs in local market of towns. Ahigh proportion work in who low and middle people born income of aslower life with and locally pace community deliberately have retired who to a people to farming the industry, providethat services work businesses for who mix of people farmers, spirit. of group community sense The includes a by astrong of way life characterised country still value residents where atraditionalplaces tourism local drives economy. the are These farming and where and cottages farmhouses to liveC tend in small villages or in isolated communities): rural isolated of (residents C: Solitude Rural Group 51 Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding
Group M, TypeGroup M, 54: Clocking Off Group D, Type 19: Conservatives Innate Group D, Type 18: Hardworking Families who are who also well-represented People in Group Bare generally People in Group * • • • • consume/what dothey do? dothey shop/whatwhere media they leisure activities/ typical the are What mosaic-uk-2009.html www.experian.co.uk/business-strategies/ For more detail and definitionssee most are not usingmost internet. the and and daily newspapers, from watching TV in this people groupthe receive information IT, to with lack tend familiarity They of most so shops. is popularis as shopping in charity physically less Watching to active. be tend TV People in Needs: this Elderly L: groupGroup Telegraph Times. Sunday and the broadsheet newspapers, particularly Daily The halls. People in this group the to read tend isas going and to concert to theatre the trips and are day cruises popular activities, Professional B: Rewards:Group Holidays, such fishing, as pursuits outdoor walking, etc. in groups.other this people group Many enjoy visiting and cinemas than offrequent theatres or growing is less There and vegetables. fruit this time group in their spend gardens, may C: Rural withinGroup Solitude: people Many day. every newspapers national to read daily tend They activities. grandchildren arelooking after also popular doingReading books, crosswords, and knitting and dining are who well-off. those for out Retirement. Holidays, cruises Active E: Group Contents (103)
Lifestyle and perceptions The rich picture on people with prostate cancer
What are people affected by prostate cancer saying about their lives both before and after a cancer diagnosis?
Before: Lifestyle and perceptions and Lifestyle ‘I’d had symptoms for around five years but I wouldn’t talk about it and I certainly didn’t go to my GP, men have a fear of being examined. In the end, it was feeling a lump that forced me to make an appointment.’ Sam, 41
‘I didn’t have the guts to talk to my GP. I felt I had an old man’s cancer and there was no one of my age to talk to.’ Rodger, 37
52 Contents 53 After: Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding ‘ Peter ‘ Oliver a cancer survivor.’ warned about me downside the of being over aren’t. one No effects but after the worse thanmy cancer. The treatment is big surprise. The inconvenience much is of cancer have The been side a effects It willIt bemoney hardship until Ido die.’ just asked I’m when me to expected die. they Iphoned office benefits the When Fuel I’m as Payment ayear too young. to other benefits, not evenWinterthe and it’s hard to accept I’m that not entitled There retirement was no early cushion dropping from agood income onto DLA. prostatewith cancer. was ashock It toI had stop work Iwas diagnosed when
Contents
Lifestyle and perceptions The rich picture on people with prostate cancer
How does people’s fear of prostate cancer compare to actual survival rates?(99,100)
Leukaemia 47%
2%
Ovarian 46% Lifestyle and perceptions and Lifestyle
3%
Testicular 97%
3%
Oesophageal 14%
4%
Prostate 82%
5%
Pancreatic 5%
5%
Breast 85%
7%
Lung 10%
9% 5-year survival Bowel 57% estimates %
10%
Brain 18% Proportion of people 16% fearing %
54 Contents 55 of other cancers. highercancer is for than majority the rate for prostate 5-yearthe survival people that to are that fact aware the more people. linked This possibly is lung and brain cancer are feared by general the amongst public, both Fear ofprostate fairly cancer low is Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Contents
Lifestyle and perceptions The rich picture on people with prostate cancer
What our prostate cancer online Macmillan Community members are saying...(76) Lifestyle and perceptions and Lifestyle
How the media* portrays prostate cancer…(68)
*UK national daily newspapers
Note: These ‘word clouds’ give greater prominence to words that appear more frequently in the source text.
56 Contents 57 • • • • • are here: results summarised The subject. is cancer the prostate where articles media UK of words in used to frequency compared the in discussions the relating cancer to prostate of words used frequency the we analysed have onlineMacmillan discussions website; hosts onits people’s perceptions? inwe of want terms to change this does mean?What do What Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding
such as, ‘tumours’, ‘cancer’ and ‘disease’. words, of use words onthe focusing instead of includes types of media none those The patients. cancer by prostate experienced confusion andthe emotional difficulties in online discussions the emphasise community ‘confused’, terms The ‘unsure’ and ‘hopefully’ audience.to anon-specialist reach Termssuch terms. in are media the simple, with comfortable to be knowledgeable by are cancer sufficiently affected those that ‘prostatectomy’, ‘PSA’, ‘lymph’, suggesting online discussions than in media: the eg is moreThere technical in terminology the ‘diet’.‘pressure’ and Common wordsundertake. include ‘risk’, journey which patients the personal the to risk, opposed as at and those cancer and diagnosis causes the upon of prostate however, media The to focus more tend patients. cancer of prostate concerns ‘radiotherapy’ and ‘surgery’ illustrating the ‘decision’, and advice, terms the with support of aform as community the use treatment goingonline those as through community emotionally, predominantly within feature the of treatment,results physically both and subsequent and the to treatment References is not readily that available elsewhere. support arewho carers, for and rely onthis community include may many familycommunity members cancer. prostate have who online The partners discussions, and to probably parents referring prominentlyfeature in online the community wordsThe ‘dad’, ‘husband’ and ‘family’ (76)(68)
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Lifestyle and perceptions The rich picture on people with prostate cancer References
Quotes The quotes on pages 23, 27, 37, 47, 52 and 53 are real quotes from people with prostate cancer or their carers, however we have changed their names to protect their identity. The quote and photo on page 5 is from a Macmillan prostate case study who has kindly agreed to be featured in this publication.
References 1. Macmillan Cancer Support. Cancer information section on prostate cancer. http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Prostate/Aboutprostatecancer/ Theprostate.aspx (Accessed July 2014) 2. Office for National Statistics – Cancer survival rates, Cancer survival in England, patients diagnosed 2007–2011 and followed up to 2012. http://www.ons.gov.uk/ons/publications/ re-reference-tables.html?edition=tcm%3A77-320365 (accessed July 2014) 3. Prevalence in 2015 estimated from Maddams et al. (2012). Prevalence in 2030 and 2040 taken directly from Maddams J, Utley M and Møller H. 2012. Projections of cancer prevalence in the United Kingdom, 2010–2040. British Journal of Cancer. 2012; 107: 1195-1202. (Scenario 1 presented here) 4. Cancer Research UK. Prostate cancer – survival statistics http://info.cancerresearchuk.org/cancerstats/types/prostate/survival/ (Accessed July 2014) 5. Cancer Research UK. Prostate cancer – UK mortality statistics. http://info.cancerresearchuk.org/cancerstats/types/prostate/mortality/ (Accessed July 2014) 6. England – Office of National Statistics. Cancer Registration Statistics, England, 2012. http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-352128 (accessed July 2014) 7. Scotland – ISD Scotland. Cancer Incidence in Scotland 2012. http://www.isdscotland.org/ Health-Topics/Cancer/Publications/data-tables.asp?id=1233#1233 (accessed July 2014) 8. Wales – Welsh Cancer Intelligence and Surveillance Unit. Official Statistics – Trends. http://www.wcisu.wales.nhs.uk/officical-statistics-exel-files-of-trend (accessed July 2014) 9. N. Ireland – Northern Ireland Cancer Registry. Online Statistics. http://www.qub.ac.uk/research-centres/nicr/CancerData/OnlineStatistics/ (accessed July 2014) 10. England and Wales – Office of National Statistics. Mortality Statistics: Deaths Registered in England and Wales, 2012. http://www.ons.gov.uk/ons/publications/re-reference-tables. html?edition=tcm%3A77-325289 (accessed July 2014) 11. Scotland – ISD Scotland. Cancer Mortality in Scotland 2012. http://www.isdscotland.org/ Health-Topics/Cancer/Publications/data-tables.asp?id=1233#1233 (accessed July 2014) 12. Cancer Research UK. Prostate cancer statistics – Key Facts. http://info.cancerresearchuk.org/ cancerstats/keyfacts/prostate-cancer/ (Accessed July 2014)
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for cancer patients and their families? patients cancer for Journal. Cancer 2010. 16:423-435 palliative that Higginson evidence is the IJ, care improve CJ. What Evans teams outcomes 1-16Fieldwork conducted unweighted. results Survey August. of online 1,495 survey Macmillan Support/YouGov Cancer living adults cancer. with UK prior of months to diagnosis the the of lungstudy cancer. and Medicine. Science Social 2014 care: in delay seeking for and reasons changes of health aUK J, al.Corner et Experience July (accessed times-for-q4-2013-14/ http://www.england.nhs.uk/statistics/2014/05/30/provider-based-cancer-waiting- England. Waiting Cancer ProviderNHS based Q4 for 2013/14. Times www.kingsfund.org.uk/document.rm?id=9149 2014) July (accessed Fund.Kings to How improve survival: cancer Explaining England’s rates. relatively poor July 2014) (accessed experience-survey-programme-national-report/file 2013-national-cancer-patient-experience-survey-reports/301-2013-national-cancer-patient- http://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/ 2013. Survey England. Patients Experience Cancer The NHS http://www.cancerscreening.nhs.uk/prostate/index.html 2014) July (Accessed Programme Management Risk Cancer –Prostate NHS http://www.cancerscreening.nhs.uk/prostate/index.html 2014) July (accessed screening. cancer Prostate UK. Research Cancer 2011.Investigations. 29: 593-601 evaluationand treatment cancer. in prostate and Original Urologic Oncology-Seminars Payne, H, Cornford, P. antigen:An evolving Prostate-specific role in diagnosis,monitoring, of Cancer. Journal British 2009. 101:518-23 al. et of K, Robb adults. Public of in cancer Britain: awareness survey apopulation-based http://www.ncin.org.uk/cancer_information_tools/eatlas/default.aspx (accessed July 2014) boundaries. Health NHS e-Atlas: Cancer NCIN. http://info.cancerresearchuk.org/ 2014) July (Accessed cancerstats/types/prostate/riskfactors/ Factors. –Risk Cancer Prostate UK. Research Cancer International, I:prevalence international Part 90: BJU comparisons. and mortality. 162–173. P. and Babb Quinn M. (2002), incidence, cancer and trends in prostate Patterns survival, 2012. Macmillan. London. of Hygiene and Tropical School London the Group at Survival Cancer Medicine. UK Research on research Cancer the by based times median survival identified Macmillan Support Cancer 2014) July (accessed re-reference-tables.html?edition=tcm%3A77-320365 2007–2011diagnosed and followed up to 2012. http://www.ons.gov.uk/ons/publications/ in England, rates, survival Cancer patients survival –Cancer Statistics National for Office org/cancerstats/types/prostate/incidence/ July 2014) (Accessed http://info.cancerresearchuk. Statistics Incidence –UK Cancer Prostate UK. Research Cancer http://www.ncin.org.uk/search/routes+to+diagnosis+2014 2014) July (accessed to Diagnosis. Routes Intelligence Cancer National Network.
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30. Wilson K, et al. ‘A qualitative exploration of financial concerns, advice, support and coping in people diagnosed with cancer and their carers’. 2010. University of Manchester for Macmillan Cancer Support. UK. 31. Cardy P, et al. Worried Sick: The Emotional Impact of Cancer. Research for Macmillan Cancer
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60 Contents 61 64. 63. 62. 61. 60. 59. 58. 57. 56. 55. 54. 53. 52. 51. 50. Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding Psycho-Oncology. 2003. 12:664-674 2003. Psycho-Oncology. Fitch MI, al. et Travelling perspectives. radiation for patient treatment: cancer 2012. diseases. and prostatic 15: 120-127 cancer: aclinical of prostate al. et review. Psychological A, aspects Sousa De cancer Prostate cancer. localised for prostate treatment International. 2007. BJU 100: 780-785 surgical and decisional BJ, of after Life,regret al. 1year at Davison et function sexual Quality 2014) July (accessed uk/publications/files/2012/08/Cancer-Patient-Experience-Survey-National-Report-2011-12.pdf 2011.Q59. Survey of health. Patient Cancer Experience Department https://www.wp.dh.gov. 49: and decision making. of Research.needs Psychosomatic Journal 2000. 13-19 Wong F, on informational cancer: psychologicalof influence factors prostate with al. et Men www.experian.co.uk/business-strategies/mosaic-uk-2009.html visit details, 0-14. Ltd.further profilesExperian For are collated built by elements, from440data MOSAIC analysed, however was small, of number these the and limited aged largely onpeople to data werenot recorded removed Type from all Only records avalid with analyses. were MOSAIC was of patient the age records the where HES 2008. of December end the was population at population (iecancers) population. population of England) Base and to base compared the profilefor combined,allcancers (and other of top the 10 the ie rarer afurther types cancer each people with living for year. profilesfor hospital admittances were UK created MOSAIC 2010/11 within NHS was taken the person hospital each for admittance earliest The financial in England will seen broadly similar be nations. in UK other patterns the the that it is assumed cancer, (other excluding malignant C44 of skin). neoplasms covers data England The only, but financial year NHS 2010/11 the for (HES) database Statistics of types levelepisode at for all analysis, 2012. July Macmillan Support Cancer from Episode Hospital was extracted Data (Scenario 1 presented here) in Kingdom, United the 2010–2040. of Cancer. Journal British 2012; 107: 1195-1202. 2012. H. J,taken Mand Utley Møller from Maddams directly of prevalence Projections cancer Prevalence in 2015 al. et (2012). from Maddams estimated Prevalence in and 2040 2030 http://www.ncsi.org.uk/what-we-aredoing/assessment-care-planning/ 2014) August (accessed and care planning. Initiative. Assessment Survivorship Cancer National content/uploads/2005/02/0405288.pdf 2014) July (Accessed Tackling Report: NAO Cancer: Improving Patient the Journey. http://www.nao.org.uk/wp- Care.Cancer 2009. 18:470-476 cancer? prostate with of European men Journal information among elderly patient about they are doing': know what or ambivalence 'As doctors the long as H, trust Cappello R. Bungay 942 195 patients, 2006 Nov 2005-Feb carers. Fieldwork conducted Telephone of 1,137 survey Macmillan Support/RDSi. Cancer by cancer: affected people 2014) July (Accessed cancerstats/types/prostate/ http://info.cancerresearchuk.org/ –UK statistics cancer Prostate UK. Research Cancer 2014) October (accessed http://prostatecanceruk.org/dayofaction of Action. Day UK. cancer Prostate Costofcancer/Cancers-Hidden-Price-Tag-report-England.pdf (accessed July 2014) Illness. 2013.behind the http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/ Group. Cancer’s Tag: Price Hidden Macmillan Support/RBS Cancer Revealing Costs the not published.Results 2014. by cancer. affected people amongst Isolation Macmillan Support. Cancer Contents
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65. Nanton V, Dale J. 'It don't make sense to worry too much': the experience of prostate cancer in African-Caribbean men in the UK. European Journal of Cancer Care. 2011. 20:62-71 66. Richards M, et al. The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors. British Journal of Cancer. 2011. 105: 1-4
References 67. Khan N F, et al. A qualitative study of unmet needs and interactions with primary care among cancer survivors. British Journal of Cancer. 2011. 105: p46–p51 68. Macmillan Cancer Support/Factiva. 2011. Word cloud formed from analysis on 18 July 2012 using www.wordle.net of the 100 most recent UK national daily newspaper articles where the key words of “prostate cancer” appeared at least once. Frequency of the most frequent words are shown in larger fonts than less frequent words. Dates ranged from 19 April 2012 to 17 July 2012. UK national daily newspapers included: The Express, The Guardian, The Independent, The Daily Mail, The Metro, The Mirror, The Star, The Sun, The Telegraph and The Times. 69. Chapple A, et al. Lung cancer patient’s perception of access to financial benefits: a qualitative study. British Journal of General Practice. 2004. 54(505):589-94 70. Sjovall K, et al. Sickness absence among cancer patients in the pre-diagnostic and the postdiagnostic phases of five common forms of cancer. Supportive Care in Cancer. 2012. 20: 741- 747 71. Bennett J A, et al. Changes in employment and household income during the 24 months following a cancer diagnosis. Supportive Care in Cancer. 2009. 17:1057-1064 72. Macmillan survey of Cancer Voices: exploring information and support needs. 2010. Macmillan Cancer Support, London. 73. Davies N, et al. The role of diet and physical activity in breast, colorectal, and prostate cancer survivorship: a review of the literature. British Journal of Cancer. 2011. 105:52-73 74. Fitch M I, et al. Men’s perspectives on the impact of prostate cancer: implications for oncology nurses. Oncology Nursing Forum, 2000; 27: 1255–1263 75. (Morrison V, et al. Common, important, and unmet needs of cancer outpatients. European Journal of Oncology Nursing. 2012. 16(2):115-123) 76. Macmillan Cancer Support. 2012. Word cloud created on wordle.net from Macmillan’s online community from the 30 most recent posts listed under ‘recent group activity for the Prostate Cancer group, on 18 July 2012 77. Khan, et al. Consulting and prescribing behaviour for anxiety and depression in long-term survivors of cancer in the UK. European Journal of Cancer. 2010. 46. 3339-3344 78. Ream E, et al. Supportive care needs of men living with prostate cancer in England: a survey. British Journal of Cancer. 2008. 98:1903-1909 79. Armes J, et al. Patients’ supportive care needs beyond the end of cancer treatment: A prospective, longitodical survey. Journal of Clinical Oncology. 2009. 27:6172-6179 80. Maher J, et al. How many people need expert symptom assessment but are not in the last year of life? 2012 Macmillan, London 81. Maddams J, et al. The cancer burden in the United Kingdom in 2007 due to radiotherapy. International Journal of Cancer. 2011. 192(12):2885-93 82. Temel J, et al. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. New England Journal of Medicine. 2010. 363(8):733-42) 83. National Bereavement Survey (VOICES) 2012. http://www.ons.gov.uk/ons/rel/subnational- health1/national-bereavement-survey--voices-/2012/stb---national-bereavement-survey-2012. html#tab-Place-of-Death (accessed July 2014)
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were estimated by taking the mean average of the survival rate for men and combined. women rate men for by average of survival the taking mean the were estimated 2014) July (accessed Note: men and both women ‘all people’affecting figuresforcancers http://www.cancerresearchuk.org/cancer-info/cancerstats/survival/common-cancers/ common cancers. most the for stats Survival UK. Research Cancer more-than-other-serious-illness (accessed July 2014) http://www.cancerresearchuk.org/about-us/cancer-news/press-release/people-fear-cancer- Illnesses. Serious Other Than People More Cancer Fear UK. Research Cancer cancer. World journal of urology. 2011. 29:43-49 of and life end care J, of in dying prostate Bergman a. men disadvantaged et Spirituality 2036-2044 and clinical factors implications.associated of European Cancer. Journal 2010. 46 (11): W,Gao al. et of to life end in Psychological care: from cancer survivorship distress Prevalence, of PainJournal 2009. Management. and Symptom 37(5): 884-912 Palliative ALiterature Review. toWalshe Community of Access al. Care C, et Services: Patterns Cancer. 2009. 101:759-764 advanced, with Rainbird incurable of patients al. et needs cancer. K, The of Journal British literature review.A systematic Patient Education and Counselling. 2009. 77:179-186 of patients: cancer and family members E, ofAdams partners al. et information needs The International. study. 2010. BJU population-based 105: 338-346 from a cancer: estimates prostate MD,Krahn with associated al. et costs Healthcare documents/getinvolved/campaigns/campaigns/the_unclaimed_millions.pdf 2014) July (accessed http://www.macmillan.org.uk/ Unclaimed Millions Report. Macmillan Support. Cancer 48:5110-21 2000. Society. Geriatrics of American the Journal approaches. death E, cancer: al. with patients’ as symptoms, and et function, care preferences Dying McCarthy 20(6):617-22 2006. Medicine. inTsai apalliative patients cancer of advanced care unit. J, al. et Palliative patterns Symptom Cancer. Cancer. 2010. 116:2126-2131 Care J, of of Prostate inBergman End-of-Life al. et Low-Income, Dying Uninsured Quality Men of internal medicine. 2011. 171:204-210 J,Bergman al. care et cancer. and of use high-intensity in dying prostate Hospice men Archive of Palliative Journal patients. cancer burden in prostrate advanced medicine. 2012. 15:20-24 Yennurajalingam, palliative of an outpatient al. Set care impact consultation The onsymptom 27:311-315 2004. diseases. Kaya E, D. Feuer Cancer: Palliative Prostate Care and Pain Relief. and prostatic cancer Prostate June%202012.pdf 2014) July (accessed com/sites/default/files/pictures/An%20atlas%20of%20variations%20in%20social%20care%20 of Variations Atlas An Mandate. in Care. Health Social 2012. June MHP http://www.mhpc. are results unweighted in research.to take Survey part agreed have who by in cancer sourced from UK Macmillan’s the affected of people database Macmillan 2010 Feb of online 1,019 survey living cancer. with people were Respondents
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References The rich picture on people with prostate cancer
appendix a jargon buster
Not sure of some of the terms used Cancer statistics often use one-year or five-year in this document? Our handy jargon survival rates. Relative survival (the standardised buster should help you out. measure used) is a means of accounting for Appendix A – Jargon buster background mortality and can be interpreted as (i) Health data terms the survival from cancer in the absence of other Incidence: When we talk about ‘cancer incidence’ causes of death. Survival rates do not specify we mean the number of people who are newly whether cancer survivors are still undergoing diagnosed with cancer within a given time-frame, treatment after the time period in question or usually one calendar year. The data can be ‘cut’ whether they are cancer-free (in remission). in a number of ways, for example by cancer type (breast, prostate, lung, colorectal, etc) or by (ii) Other terms gender, age, etc. The latest data we have is for Co-morbidities: This means either the presence of 2012, and we know that over 300,000 people are one or more disorders (or diseases) in addition to newly diagnosed with cancer in the UK every year. a primary disease or disorder, or the effect of such Incidence can sometimes be given as a rate (per additional disorders or diseases. head of population). Curative treatment: When we talk about curative Mortality: When we talk about ‘cancer mortality’ treatment for someone with cancer, we talk about mean the number of people who die from cancer treatments intended to cure the cancer; this usually within a given time-frame, usually one calendar year. mean the removal of a cancerous tumour. It works The latest data we have is for 2012, and we know best on localised cancers that haven’t yet spread to that over 150,000 people die from cancer in the UK other parts of the body, and is often followed by every year. Mortality can sometimes be given as a radiotherapy and/or chemotherapy to make sure all rate (per head of population). cancerous cells have been removed.
Prevalence: When we talk about ‘cancer Palliative treatment: Palliative treatment is only prevalence’ we mean the number of people used to ease pain, disability or other complications who are still alive and who have had, within a that usually come with advanced cancer. Palliative defined period, a cancer diagnosis. It equates treatment may improve quality of life and medium- to the number of people living with cancer. Any term survival, but it is not a cure or anti-cancer prevalence figure is for a snapshot (set point in treatment. However palliative treatment can be time). The latest snapshot we have was made in given in addition to curative treatment in order to 2015, and we estimate that there are 2.5 million help people cope with the physical and emotional people living with cancer in the UK. Some data issues that accompany a diagnosis of cancer. are only available and presented for 20-year prevalence (i.e. anyone with a cancer diagnosis within a 20 year period). Prevalence can sometimes For further support, please contact be given as a rate (per head of population). [email protected]
Survival: When we talk about ‘cancer survival’ we mean the percentage of people who survive a certain type of cancer for a specified amount of time.
64 Contents 65 Not Understanding the numbers, needs and experiences of people affected by cancer by affected people of experiences and needs numbers, the Understanding e s Contents
Notes The rich picture on people with prostate cancer
Notes Notes
66 Contents Understanding the numbers, needs and experiences of people affected by cancer
Full suite of the Rich Pictures This document is one of the twenty in the full suite of Rich Pictures summarising the numbers, needs and experiences of people affected by cancer. See a full list below:
Overarching Rich Picture
The Rich Picture on people with cancer (MAC15069)
The Rich Pictures on cancer types
The Rich Picture on people living with cervical cancer (MAC13846_11_14) The Rich Picture on people living with breast cancer (MAC13838_11_14) The Rich Picture on people living with prostate cancer (MAC13839_11_14) The Rich Picture on people living with lung cancer (MAC13848_11_14) The Rich Picture on people living with cancer of the uterus (MAC13844_11_14) The Rich Picture on people living with non-Hodgkin lymphoma (MAC13843_11_14) The Rich Picture on people living with rarer cancers (MAC13847_11_14) The Rich Picture on people living with malignant melanoma (MAC13841_11_14) The Rich Picture on people living with head & neck cancer (MAC13845_11_14) The Rich Picture on people living with colorectal cancer (MAC13840_11_14) The Rich Picture on people living with bladder cancer (MAC13842_11_14)
The Rich Pictures on age groups
The Rich Picture on people of working age with cancer (MAC13732_14) The Rich Picture on children with cancer (MAC14660_14) The Rich Picture on older people with cancer (MAC13668_11_14) The Rich Pictureon teenagers and young adults with cancer (MAC14661_14)
Other Rich Pictures
The Rich Picture on people at end of life (MAC13841_14) The Rich Picture on carers of people with cancer (MAC13731_10_14) The Rich Picture on people with cancer from BME groups (MAC14662_14) The Emerging Picture on LGBT people with cancer (MAC14663_14)
All these titles are available in hard-copy by calling our Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am–8pm), or by ordering online at www.be.macmillan.org.uk. A wealth of other resources are also available, all produced by Macmillan Cancer Support and available free of charge.
67 Contents When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. How to talk to those close to you. What to do about work. How you’ll cope with the extra costs.
At Macmillan, we know how a cancer diagnosis can affect everything. So when you need someone to turn to, we’re here, because no one should face cancer alone. We can help you find answers to questions about your treatment and its effects. We can advise on work and benefits, and we’re always here for emotional support when things get tough.
Right from the moment you’re diagnosed, through your treatment and beyond, we’re a constant source of support to help you feel more in control of your life.
We are millions of supporters, professionals, volunteers, campaigners and people affected by cancer. Together we make sure there’s always someone here for you, to give you the support, energy and inspiration you need to help you feel more like you. We are all Macmillan.
For support, information or if you just want to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk
Code: MAC13839_11_14 ©Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604).
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