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The Rich Picture
Dave, 75, living with head and neck 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
•B
e 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 booklet ‘Understanding head and neck cancers’ (MAC11632) more helpful:
Understanding
head and neck
cancers
MAC11652
All these titles are available in hard-copy by calling our Macmillan Support Line free on 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
by cancer
Contains stories and quotes
from real-life examples of
people affected by cancer
who have been helped
by Macmillan.
Professionals/Services
Contains specific examples
of our services across the
UK, and the impact they
are having.
Comms Platform
Rich Pictures
Impact Briefs
Describes how to
communicate with people
affected by cancer.
Describe the numbers,
needs and experiences
of key groups within
the 2.5 million
people with
cancer.
Generically describe
what our services do,
and the impact they
have on
people
affected
by cancer.
Local Cancer Intelligence
A local overview of the essential
data on the changing burden of
cancer in your area, including
prevalence, survival, patient
experience and comparisons
across clinical commissioning
groups.
Routes from Diagnosis
Results from the first phase
of the Routes from Diagnosis
study, including outcome
pathways, survival rates,
inpatient costs and morbidities
associated with breast, lung,
prostate and brain cancers.
For further information about any of the above, please contact a member of
Macmillan’s Evidence Department, or contact [email protected].
Contents
Contents
1
Summary of people living with head and neck cancer
2
What is head and neck cancer?
4
Macmillan’s aims and outcomes
6
Key facts and stats
8
The cancer journey
24
Needs and experiences – Diagnosis
26
Needs and experiences – Treatment
34
Needs and experiences – Survivorship (post-treatment)
40
Needs and experiences – Progressive illness and end of life
44
Lifestyle and perceptions
50
References
58
Appendix A – Jargon buster
65
Contents
Summary of head and neck cancer
The rich picture on people with head and neck cancer
summary of people living with
head and neck cancer
Key stats
Diagnosis
Treatment
Head and neck cancer is the
seventh most commonly
diagnosed cancer and
an average of 31 people
receive a head and neck
cancer diagnosis every day
in the UK.(3a, 3b, 3c, 3d)
20% of people with head
and neck cancer felt that
their health deteriorated
whilst they were waiting
for their first hospital
appointment.(32)
Most head and neck
cancers are treated by
surgery, radiotherapy or a
combination of both. Plastic
or reconstructive surgery is
also often needed for patients
with these cancers.(39)
Around 62,530 people were
living with head and neck
cancer in the UK in 2010.(4)
Head and neck cancers cause
over 3,300 deaths per year
in the UK.(6a, 6b, 6c)
Head and neck cancer is
much more common in men
than in women. Oral cancer,
the most common form of
head and neck cancer, causes
more deaths in males than
females at a ratio of 2:1.(17)
Head and neck
cancer is the
seventh most
common type
of cancer in
the UK.
2
Weight loss is a common
phenomenon in head
and neck cancer patients
at diagnosis.(31)
There are still significant
delays in the diagnosis
of head and neck cancer.
This is because patients are
often poorly educated
about symptoms.(34)
81% of patients who are
undergoing treatment for
head and neck cancer
experience pain.(52)
Treatment for head and neck
cancers can cause problems
with eating, swallowing,
breathing and speech.(23)
83% of cancer patients (not
specifically head and neck
cancer) are, on average,
£570 a month worse off
as a result of a cancer
diagnosis.(13)
70% of people needing
emotional support with head
and neck cancer felt that
they were definitely given
enough emotional support
from hospital staff during
treatment.(57)
Diagnosis of
head and neck
cancer may
be delayed by
poor patient
education about
its symptoms.
Treatment for
head and neck
cancer can
cause pain,
and problems
with eating and
swallowing.
Contents
Survivorship
End of life
Lifestyle & perceptions
Treatment for head and
neck cancers often has
permanent effects on basic
activities like breathing,
speaking, eating and
drinking.(23)
457,000 people (not just
those with cancer) need good
palliative care services every
year in England, but around
92,000 people are not
being reached.(75)
Asian women have an
increased risk of cancer
of the mouth compared
to those of White or Black
ethnic origin.(19)
Patients with head and neck
cancer have been found
to be more frequently
distressed than patients with
other cancers.(66)
Oral dysfunction, loss of
appetite, deteriorated
social functioning and
high levels of anxiety are
barriers for head and neck
cancer patients to return to
work after treatment.(62)
Those who are older, male,
from ethnic minorities, not
married, lacking in home
care or socio-economically
disadvantaged are all less
likely to access community
palliative care services.(83)
The most common symptoms
experienced by more than
half of people during
their last two weeks of
life include shortness
of breath, pain, and
confusion.(77)
High levels of
self-consciousness of
appearance have been
found amongst patients with
head and neck cancer.(65)
Death of a partner has been
shown to be a trigger for
claiming income support.(80)
Patients with
head and neck
cancer may
be self-conscious
of their
appearance.
92,000 people
who require
good palliative
care are not
being reached.
3
Media reports on head and
neck cancer clearly focus on
the causes of the disease.
The most frequently cited
words include ‘alcohol’
and ‘drinking’.(89)
Elderly people reliant
on state support are wellrepresented amongst people
being treated for head and
neck cancer.(86)
Contents
Summary of head and neck cancer
Understanding the numbers, needs and experiences of people affected by cancer
What is head and neck cancer?
The rich picture on people with head and neck cancer
introduction to
head and neck
cancer
What is head and neck cancer?(1)
Cancer can occur in any of the tissues or organs
in the head and neck. There are over 30 different
places in which cancer can develop in the head
and neck area. The most commonly diagnosed
head and neck cancers are:
• Cancers of the Oral Cavity
• Oropharyngeal cancer
• Cancer of the ear
• Cancer of the salivary gland
• Cancer of the eye
• Cancer of the voice box (larynx),
• Cancer of the thyroid gland
About 90% of head and neck cancers are
of a type called squamous cell carcinoma.
These start in the cells that form the lining of
the mouth, nose, throat or ear, or the surface
layer covering the tongue.
In rarer instances, head and neck cancers can
also develop from other type of cells:
• Lymphomas develop from the cells
of the lymphatic system.
• Adenocarcinomas develop from cells that
form the lining of glands in the body.
• Sarcomas develop from the cells which
make up muscles, cartilage or blood vessels.
• Melanomas start from cells called
melanocytes, which give colour to the
eyes and skin.
4
There are a number of risk factors that can
increase the chance of developing head and
neck cancer. These are:
• Gender – Head and neck cancers
are more common in men than women.
• Age – Head and neck cancers
are more common in older people.
• Smoking
• Drinking alcohol
• Long periods of exposure to the sun
• A poor diet
• Exposure to chemicals
• Human papilloma virus
Want to know more?
Macmillan produces a wealth of information
about what head and neck cancer is, its causes,
symptoms and treatment. Macmillan staff can
refer to reference (1) on page 58 for where you
can find this information, or if you’re affected by
cancer, call our Macmillan team on the number
below, or visit our website.
Almost one in two of us will get cancer.
For most of us it will be the toughest fight we
ever face. And the feelings of isolation and
loneliness that so many people experience
make it even harder. But you don’t have to go
through it alone. The Macmillan team is with
you every step of the way. Call the
Macmillan team free on 0808 808 0000
(Monday to Friday, 9am-8pm) or visit
www.macmillan.org.uk
Contents
What is head and neck cancer?
‘I had a very, very full life. I absolutely loved my work.
I was heavily involved in my rugby club, I actually
made the programme and printed the programme
every week. Then when I was diagnosed and I started
my chemo I still went down, I still did the programmes.
But, after the second session I stopped going down
because I was losing my hair, I couldn’t eat, I couldn’t
swallow. I lost over six and a half stone in two months.
In my down moments I thought, I’ll never do this. I’ll
never do this. But, then I would tell myself, you’ve got
to try and do it, you must do it.’
Dave, 75
5
Contents
The rich picture on people with head and neck cancer
Macmillan’s aims and outcomes
Macmillan’s
aIMS AND
outcomes
Macmillan’s aims and outcomes –
and how they are different for people
with head and neck cancer
The estimated total number of people living with
cancer in the UK in 2015 is almost 2.5 million.
Assuming that all existing trends in incidence and
survival continue cancer prevalence is projected
to increase to 4 million in 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.(2)
How is this different for people
with head and neck cancer?
Macmillan is carrying out work internally to
‘baseline’ the 9 Outcomes, and we hope to
be able to show how the 9 Outcomes vary for
different groups. This document will be updated
when this work is complete, and the information
used to help focus our efforts to reach those
most in need of support.
Macmillan’s ambition is to reach all of these
people and help improve the set of 9 Outcomes
you can see opposite. Remember, certain
groups will identify more or less strongly with
the various Outcomes.
Around 62,530 people
were living with head and
neck cancer in the UK in
2010, based on people
living up to 20 years post
a cancer diagnosis.(4)
6
Contents
The 9 Outcomes for people living with cancer
7
I was diagnosed
early
I understand,
so I make good
decisions
I get the treatment
and care which are
best for my cancer,
and my life
Those around
me are well
supported
I am treated
with dignity
and respect
I know what I can
do to help myself
and who else can
help me
I can enjoy life
I feel part of a
community and
I’m inspired to give
something back
I want to die well
Contents
Macmillan’s aims and outcomes
Understanding the numbers, needs and experiences of people affected by cancer
The rich picture on people with head and neck cancer
Key facts and stats
THE facts on
head and neck
cancer
This section presents some of
the key stats and facts relating
to people with head and neck
cancer. You may benefit from
referring to the jargon buster
on page 65 for details on
some of the terms used in
this section. Please note that
incidence and mortality
data on all cancers exclude
non-melanoma skin cancer.
31
people are diagnosed with head and neck cancer
every day (3a, 3b, 3c, 3d)
62,530
people were living with head and neck cancer
in the UK in 2010, based on people living up to
20 years post a cancer diagnosis.(4)
85%
of men live for more than one year following
a diagnosis of laryngeal cancer, one of the most
common types of head and neck cancer.(5)
66%
of men live more than five years after their
laryngeal cancer diagnosis. Survival rates for
other head and neck cancers are not available.(5)
9
people die every day of head and neck cancer
in the UK (6a, 6b, 6c)
8
Contents
How many people get head and neck cancer per year?
(incidence)(3a, 3b, 3c, 3d)
Cancer incidence, UK, 2012, top 10 cancer sites
51,079
Breast
Lung
44,486
Prostate
43,436
41,854
Colorectal
Malignant Melanoma
13,497
Non-Hodgkin Lymphoma 12,879
Head & Neck
Bladder
Kidney
Uterus
11,152
10,702
9,524
8,617
Head and neck cancer is the
seventh most commonly diagnosed
type of cancer, with over 11,000
new cases of head and neck cancer
being diagnosed every year.
9
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
How many people die from head and neck cancer per year?
(mortality) (6a, 6b, 6c)
Mortality, UK, 2012, top 10 cancer sites
35,392
Lung
Colorectal
16,198
11,732
Breast
10,841
Prostate
8,672
Pancreas
7,705
Oesophagus
Bladder
Stomach
5,244
4,759
Non-Hodgkin Lymphoma 4,687
Ovary
4,136
Head and neck
3,387
Head and neck cancers cause over
3,300 deaths in the UK every year.
10
Contents
How many people are currently living with head and neck cancer?
(prevalence)(4)
People were living with head and neck cancer in the UK in 2010,
based on people living up to 20 years post a cancer diagnosis.
62,530
11
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
What are the key stats
for England?
See data on incidence, mortality and
prevalence for England
How many people get head and neck
cancer per year in England? (incidence)(3a)
8,916
new cases of head and neck cancer diagnoses
in England in 2012.
How many people die from head and
neck cancer per year in England?
(mortality)(6b, 9)
2,712
head and neck cancer deaths in England in 2012.
How many people are living with
head and neck cancer in England?
(prevalence)(4)
50,359
people were living with head and neck cancer in
England in 2010, based on people living up to
20 years post a cancer diagnosis (1991 and 2010).
*Age-Standardised Rates are used to eliminate the variation in
the age structures of populations to allow for fairer comparisons
between incidence and mortality rates in different areas (in this
case in the four different UK nations). The Age-Standardised Rate is
a rate that has been weighted using a standard population (in this
case the European Standard Population) to control for differences in
populations. Age-Standardised incidence and mortality rates have
been expressed here as rates per 100,000 head of population.
What is the age-standardised*
rate of incidence of oral cancer
in England?(17)
8.6
new cases of oral cancer diagnoses in England in
2011 per 100,000 heads of population
What is the age-standardised*
rate of mortality from oral cancer
in England?(22)
2.4
cases of oral cancer deaths in England in 2011
per 100,000 heads of population
12
Contents
What are the key stats
for Scotland?
See data on incidence, mortality and
prevalence for Scotland
How many people get head and neck
per year in Scotland? (incidence)(3c)
1,315
new cases of head and neck cancer diagnoses
in Scotland in 2012.
How many people die from head and
neck cancer per year in Scotland?
(mortality)(6c)
422
head and neck cancer deaths in Scotland in 2012.
How many people are living with
head and neck cancer in Scotland?
(prevalence)(4)
7,094
people were living with head and neck cancer in
Scotland in 2010, based on people living up to
20 years post a cancer diagnosis (1991 and 2010).
*Age-Standardised Rates are used to eliminate the variation in
the age structures of populations to allow for fairer comparisons
between incidence and mortality rates in different areas (in this
case in the four different UK nations). The Age-Standardised Rate is
a rate that has been weighted using a standard population (in this
case the European Standard Population) to control for differences in
populations. Age-Standardised incidence and mortality rates have
been expressed here as rates per 100,000 head of population.
What is the age-standardised*
rate of incidence of oral cancer
in Scotland?(17)
11.8
new cases of oral cancer diagnoses in Scotland
in 2011 per 100,000 heads of population
What is the age-standardised*
rate of mortality from oral cancer
in Scotland?(22)
3.8
cases of oral cancer deaths in Scotland in 2011
per 100,000 heads of population
13
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
What are the key stats
for Wales?
See data on incidence, mortality and
prevalence for Wales
How many people get head and neck
cancer per year in Wales? (incidence)(12)
610
new cases of head and neck cancer diagnoses in
Wales in 2012.
How many people die from head
and neck cancer per year in Wales?
(mortality)(17)
169
head and neck cancer deaths in Wales in 2012.
How many people are living with head
and neck cancer in Wales? (prevalence)(4)
3,366
people were living with head and neck cancer
in Wales in 2010, based on people living up to
20 years post a cancer diagnosis (1991 and 2010).
*Age-Standardised Rates are used to eliminate the variation in
the age structures of populations to allow for fairer comparisons
between incidence and mortality rates in different areas (in this
case in the four different UK nations). The Age-Standardised Rate is
a rate that has been weighted using a standard population (in this
case the European Standard Population) to control for differences in
populations. Age-Standardised incidence and mortality rates have
been expressed here as rates per 100,000 head of population.
What is the age-standardised*
rate of incidence of oral cancer
in Wales?(17)
10.1
new cases of oral cancer diagnoses in Wales in
2011 per 100,000 heads of population
What is the age-standardised*
rate of mortality from oral cancer
in Wales?(22)
2.3
cases of oral cancer deaths in Wales in 2011 per
100,000 heads of population
14
Contents
What are the key stats
for Northern Ireland?
See data on incidence, mortality and
prevalence for Northern Ireland
How many people get head and neck
cancer per year in Northern Ireland?
(incidence)(3d)
311
new cases of head and neck cancer diagnoses in
Northern Ireland in 2012.
How many people die from head
and neck cancer per year in Northern
Ireland? (mortality)(3c)
84
head and neck cancer deaths in Northern Ireland
in 2012.
How many people are living with head
and neck cancer in Northern Ireland?
(prevalence)(4)
1,709
people were living with head and neck cancer in
Northern Ireland in 2010, based on people living up
to 20 years post a cancer diagnosis (1991 and 2010).
**Age-Standardised Rates are used to eliminate the variation in
the age structures of populations to allow for fairer comparisons
between incidence and mortality rates in different areas (in this
case in the four different UK nations). The Age-Standardised Rate is
a rate that has been weighted using a standard population (in this
case the European Standard Population) to control for differences in
populations. Age-Standardised incidence and mortality rates have
been expressed here as rates per 100,000 head of population.
What is the age-standardised*
rate of incidence of oral cancer
in Northern Ireland?(17)
9.3
new cases of oral cancer diagnoses in Northern
Ireland in 2011 per 100,000 heads of population
What is the age-standardised*
rate of mortality from oral cancer
in Northern Ireland?(22)
2.6
cases of oral cancer deaths in Northern
Ireland in 2011 per 100,000 heads of population
15
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
What proportion of people survive head and neck cancer?
(survival)(5)
Relative 5-year survival estimates, 2007–2011, by gender, England
Testes
97.1%
Melanoma
85.5%
92.1%
Breast
85.0%
Hodgkin Lymphoma
82.4%
86%
Prostate
81.7%
Uterus
77.4%
Cervix
67.3%
Larynx
66.1%
Non-Hodgkin Lymphoma
62.4%
68.5%
Bladder
58.6%
49.1%
Rectum
57.1%
Male
59.9%
Colorectal
56.5%
Female
57.8%
16
Contents
Unfortunately, research on the survival rates
for all types of head and neck cancer has not
yet been carried out. However, we do have
5-year survival rates for laryngeal cancer, the
second most common type of head and neck
cancer. This data is only available for men due
to the relatively low number of women who get
laryngeal cancer.
Of the 21 most common cancer types,
laryngeal cancer is placed eighth in the
rankings of 5-year survival in England.
17
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
How many people live beyond one year of their head and neck
cancer diagnosis? (5)
Unfortunately, research on one-year survival rates for the majority of head and neck cancer has not
yet been carried out. However, we do have one-year survival rates for laryngeal cancer, the second
most common type of head and neck cancer. This data is only available for men due to the relatively
low number of women who get laryngeal cancer.
Age-standardised relative survival estimates, 2007-2011, by gender, England
Testis
98.1%
Melanoma
96%
97.9%
95.8%
Breast
93.1%
Prostate
89.9%
Uterus
Larynx
85%
83.7%
Cervix
79.9%
Rectum
79.4%
77.4%
Non-Hodgkin lymphoma
80.1%
78%
Bladder
67.2%
75.9%
Colorectal
Men
74.7%
Lung
31%
Women
35.4%
18
Contents
How do UK survival rates compare
internationally?
Specific data is not readily available on head
and neck cancer survival rates to compare the
UK internationally, although data for all cancers
(not just head and neck cancer) does show that
survival rates in England are improving overall.
Compared to the latest international data,
however, England has lower overall one-year
and five-year cancer survival rates than many
countries including Canada, Australia, Sweden
and Norway. This suggests there is more we can
do to improve survival for people with cancer in
the UK.(16)
What are the major demographic
variations in incidence, mortality,
prevalence and survival for head
and neck cancer?
Gender
The lifetime risk of developing oral cancer
in the UK is estimated to be 1 in 84 for men
and 1 in 160 for women.(17)
Laryngeal cancer is much more common in
males than in females. In the UK there were
1,932 new cases diagnosed in males in 2011.
This compares with 428 cases in females –
giving a male:female ratio of almost 5:1.(18)
Ethnic background
Asian women are significantly much more likely
to get cancer of the mouth than White or Black
women. Age-standardised rates for Asian people
ranged from 4.0 to 7.1 per 100,000, and were
significantly higher than the age-standardised
rates of 3.4 to 3.6 per 100,000 for White people
for all ages. Rates for the Black community were
significantly lower than either of the other two
groups, ranging from 1.2 to 2.9 per 100,000.(19)
19
Age
Oral cancer incidence is strongly related to age.
For men, incidence rates increase sharply from
around age 40-44 and peak at ages 60-69,
before falling in the over 70s age group. Agespecific oral incidence rates increase much more
gradually for women, from around age 40-44,
but peaking in the 85+ age group. In the UK
between 2009 and 2011, an average of 71%
of male oral cancer cases and 59% of female
oral cancer cases were diagnosed in the 50-74
age group. This is significantly higher than the
average incidence of oral cancer in people aged
75 and over, with 15% of cases in men and 29%
in women.(17)
Laryngeal cancer is rarely diagnosed in people
younger than 40, but incidence rises steeply
thereafter, peaking in people aged 65-69.
Nearly three quarters of cases (74%) occur in
people over the age of 60.(18)
As for most cancers, survival is better for younger
than older people with cancers of the oral cavity,
oropharynx and tongue. The five-year survival
rates for laryngeal cancer in men in England
between 2007 and 2011 ranged from 76% in
the 15-49 age group, to 71% in the 50-59 group
and 56% in the 80-99 group.(5)
Social background
Oral cancer incidence is strongly associated with
social deprivation. This is reflected in statistics
for all head and neck cancer types. The most
recent England-wide data for 2000-2004 shows
age-standardised incidence rates for head and
neck cancer are around 130% higher (more
than double) for men living in more deprived
areas compared with the least deprived, and
more than 74% higher for women. Similar results
have also been published for Northern Ireland
and Wales. A study in Scotland for 2005-2009
shows a slightly larger deprivation gap, with agestandardised incidence rates being three times
higher in the most deprived population.(17)
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
What are the geographical ‘hotspots’ for head and neck
cancer incidence, mortality and survival? (21)
The maps reflect Oral Cancer data (excluding part of the
lip and the hard palate) as this is the most common type
of head and neck cancer.
Oral cancer incidence,
UK, 2007-2009
Low
Medium
High
High
Important note
These maps show only the broad
patterns of variation in incidence
and mortality. Access to the very
detailed and accurate data at the
cancer network and strategic health
authority level is via the Oxford
cancer intelligence unit, head and
neck cancer e-atlas, http://www.
ociu.nhs.uk/data/eAtlas/atlas.
html or Macmillan staff can contact
Macmillan’s Health data team.
The maps reflect Oral Cancer data
(excluding part of the lip and the
hard palate) as this is the most
common type of head and neck
cancer. Details of other types of
head and neck cancer are available
on the link above.
Oral cancer is most common in the North
West of England and South Scotland. It is less
common in Wales and the South of England.
20
Contents
Oral cancer mortality,
UK, 2008-2010
Low
Medium
High
High
Important note
These maps show only the broad
patterns of variation in incidence
and mortality. Access to the very
detailed and accurate data at the
cancer network and strategic health
authority level is via the Oxford
cancer intelligence unit, head and
neck cancer e-atlas, http://www.
ociu.nhs.uk/data/eAtlas/atlas.
html or Macmillan staff can contact
Macmillan’s Health data team.
The maps reflect Oral Cancer data
(excluding part of the lip and the
hard palate) as this is the most
common type of head and neck
cancer. Details of other types of
head and neck cancer are available
on the link above.
Oral cancer mortality rates are generally higher in
West Scotland, Northern Ireland and the North of
England compared with the rest of the UK.
Survival
Unfortunately, data is not available on the survival rates for head and neck cancers.
21
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
Key facts and stats
The rich picture on people with head and neck cancer
What are the major trends?
(Incidence/mortality/prevalence
or survival)
Oral cancer incidence rates have increased in
Britain since the mid-1970s, with most of this
increase occurring since the late 1980s for both
sexes. In the last decade (between 2000-2002
and 2009-2011), European age-standardised
incidence rates have increased by 32% and 33%
for men and women, respectively.(17)
The age-standardised incidence rates for
laryngeal cancer in Great Britain are very
different for males and females. For males,
the incidence rate rose from just under 6 per
100,000 in the late 1970s to a peak of 6.9 per
100,000 in 1988. This rate slightly dropped to
6.4 per 100,000 in early 2000s, and decreased
even further from 2002 onwards to 5.0 per
100,000 in 2011. The rate for females has
remained close to 1 per 100,000 population
throughout the past decades.(18)
The overall age-standardised mortality rate for
oral cancer has remained fairly stable between
1971 and 2011, with rates at 3.6 and 1.5
per 100,000 in 2011 for males and females,
respectively. However, the all-ages oral cancer
mortality figure masks a variation in age-specific
trends. Mortality rates among men aged 80 and
over have fallen by more than 65%, while rates
in those aged 70-79 have also fallen by 65%
since 1971. By contrast, for men aged 50-59
there has been an increase of 93%. For younger
men the rate has remained stable.(22)
22
Contents
Key facts and stats
Understanding the numbers, needs and experiences of people affected by cancer
‘The diagnosis was a
bombshell – I am a lifelong
non-smoker, I drink alcohol
in very small amounts, and I
have a history of eating well.
I had no symptoms resulting
from the primary tumour - no
pain, no difficulty swallowing.’
Prina, 52, North West
23
Contents
The rich picture on people with head and neck cancer
The cancer
The cancer journey
journey
We know that everyone with cancer has different experiences at
different times of their cancer journey. However, most people will
go through one or more of the four stages of the ‘cancer journey’.
The following pages summarise what we currently know about the
needs and experiences of people with head and neck cancer at
these stages.
24
Contents
A typical ‘cancer journey’ showing four key stages:
Diagnosis
Treatment
What happens to me when
I’m diagnosed with cancer?
What can I expect when
I’m being treated for cancer?
•People often show signs and symptoms
that may be caused by cancer, and a GP
can refer patients for tests to find out more. •Cancer can be treated in different ways
depending on what type of cancer it is, where
it is in the body and whether it has spread.
•Screening aims to detect cancer at an
early stage or find changes in cells which
could become cancerous if not treated.
However, screening is not yet available
routinely for head and neck cancer.
•Different cancer types can have varying
treatment regimes, and treatment is
personalised to each patient.
•However, screening can only pick up some
cancers, and we know that some people
have their cancer diagnosed at a late stage
– this can have a huge effect on their chances
of survival.
Survivorship*
Progressive illness
and end of life
If I complete my treatment for
cancer, what next?
If my cancer is incurable,
what might I experience?
•An increasing number of people survive
their initial (or subsequent) cancer treatments,
and often have rehabilitation and other
needs post-treatment.
•Progressive illness includes people with
incurable cancer, but not those in the
last year of life. Many of these people have
significant treatment-related illnesses.
•We also know they need support to be
able to self-manage.
•End of life generally means those in the
last year of life. Needs often get greater
as the person moves closer to death.
•Many people in this stage experience
long-term or late effects of their cancer,
and/or their cancer treatment.
*While Survivorship relates to the time both during and post-treatment, as illustrated by the Recovery Package (p41),
this section largely highlights the post-treatment needs and experiences of people living with cancer.
25
Contents
The cancer journey
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Diagnosis
The rich picture on people with head and neck cancer
needs and experiences
diagnosis
What are the top 3 signs and symptoms General awareness of cancer signs and
of head and neck cancer? (23)
symptoms is lower in men, those who are
There are over 30 different areas of the head
and neck where cancer can develop so signs and
symptoms vary. Some of the most common include:
1.Hoarseness persisting for more than six weeks
2.Ulceration of the mouth persisting for more
than three weeks
3.Oral swellings persisting for more than
three weeks
How good are we at early diagnosis?
How aware are people of signs and
symptoms? How aware are GPs of
signs and symptoms?
Head and neck cancers are often diagnosed
late, because they can lack any specific
symptoms, and patients often present having
developed a second primary tumour affecting
their respiratory system, for example in the
lungs.(24)
Because head and neck cancers are relatively
rare, the average GP would only expect to see
a new case about once every six years.(23)
We were unable to find any specific research into
GP awareness of signs and symptoms of head
and neck cancer.
younger, and from lower socio-economic status
groups or ethnic minorities.(25)
The most commonly endorsed barriers to seeking
medical help with potential cancer symptoms
are: difficulty making an appointment, worry
about wasting the doctor’s time and worry about
what would be found. Emotional barriers are
more prominent in lower socio-economic groups
and practical barriers (eg ‘too busy’) are more
prominent in higher socio-economic groups.(25)
Low cancer awareness contributes to delay in
presentation for cancer symptoms and may lead
to delay in cancer diagnosis.(26)
How well does screening work for
head and neck cancer?
There is no national screening programme
for any form of head and neck cancer and
it is unlikely that such a programme will be
established in the near future. Screening has
been considered for oral cancer but as it is
relatively rare the pick-up rate would be very
low. There is also little evidence to show that
screening would be beneficial for the population
as a whole. More research is needed, particularly
on screening members of high risk groups.(92)
Patients with cancer in the UK tend to present
with more advanced disease and have
poorer survival rates than many of their
European counterparts. The most likely
explanations are either late presentation by
patients or late onward referral by GPs.(25)
26
Contents
‘I was diagnosed with a tumour
in one of my tonsils and was
told I’d be having a scan
that same afternoon. My first
thought was that I really didn’t
have time as I had a business
meeting. My second thought
was perhaps I’ll never be able
to work ever again.’
Mark, 58
27
Contents
The cancer journey – Diagnosis
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Diagnosis
The rich picture on people with head and neck cancer
How is head and neck cancer diagnosed?* (Routes to diagnosis)(27)
Routes to diagnosis, 2006-2010, England
Oral
Larynx
Emergency
Emergency
6%
11%
GP referral
GP referral
27%
40%
Two Week
Wait
Two Week
Wait
31%
33%
Other**
35%
Other**
15%
* Does not add up to 100% due to rounding.
**‘Other’ includes inpatient, outpatient, and unknown routes.
11% of people newly diagnosed with cancer of
the larynx, and 6% of people diagnosed with
cancer of the oral cavity are diagnosed via the
emergency route.
This is significantly lower than the average for all
cancers (23%), although patients with head and
neck cancers tend not to be diagnosed early.
28
Contents
How many head and neck cancer patients had to see their GP
more than twice before they were diagnosed? (28)
More than two GP visits, 2013, UK
Brain/Central Nervous system
39%
Haematological
37%
Sarcoma
36%
Other
35%
Lung
32%
Upper Gastro-Intestinal
32%
Colorectal
31%
Gynaecological
28%
Head and Neck
26%
Prostate
24%
Urological
22%
Skin
Breast
10%
8%
26% of people newly diagnosed with head and neck
cancer had to see their GP more than twice before
they were diagnosed compared with 8% of breast
cancer patients, and 10% of skin cancer patients.
29
Contents
The cancer journey – Diagnosis
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Diagnosis
The rich picture on people with head and neck cancer
How does stage at diagnosis relate to probable survival rates?
The impact of Stage at diagnosis on survival – head and neck cancer
The staging of the different types of head and neck cancers are all slightly different.(29)
Most types of cancer have 4 stages, numbered from 1–4.
Stage 1
Stage 2
Stage 3
Stage 4
Usually means a
cancer is relatively
small and contained
within the organ it
started in.
Usually means the
cancer has not
started to spread
into surrounding
tissue, but the
tumour is larger than
Stage 1. Sometimes
Stage 2 means
that cancer cells
have spread into
lymph nodes close
to the tumour. This
depends on the type
of cancer.
Usually means the
cancer is larger. It
may have started
to spread into
surrounding tissues
and there are cancer
cells in the lymph
nodes in one area.
Means the cancer
has spread from
where it started
to another body
organ. This is also
called secondary or
metastatic cancer.
The later the stage at diagnosis, the poorer
the chances of survival – in other words early
diagnosis and treatment of head and neck
cancer saves lives.
30
Contents
How long do people with head and neck cancer have to wait
to be referred? (30)
According to recent data for England, 95% of
patients with suspected head and neck cancer were
seen by a specialist within 2 weeks of referral.
This is in line with the average of 94% for all cancers.
31
Contents
The cancer journey – Diagnosis
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Diagnosis
The rich picture on people with head and neck cancer
Financial
and medical needs
needs
Physical
Pain, mouth sores, loss of appetite and
swallowing problems are reasons for the
observed weight loss in head and neck cancer
patients even before treatment has started.(31)
Not specific to people with head
and neck cancer
20% of people with head and neck cancer
felt that their health deteriorated whilst they
were waiting for their first hospital
appointment. This is compared to 6% of
patients with breast cancer and 6% of patients
with malignant melanoma.(32)
An estimated 30% of people with cancer
experience a loss of income as a result of their
cancer, with those affected losing, on average,
£860 a month. Additional costs and loss of
income arise at different points in the cancer
journey, but these figures show the financial
strain that a cancer diagnosis can place on
many families.(13)
83% of people with cancer are financially
worse off because of their diagnosis.(13)
A 2012 survey found that 33% of people
affected by cancer stopped working either
permanently or temporarily.(13)
32
Contents
Emotional and
information psychological
needs
needs
Practical and
There are still significant delays in the
diagnosis of head and neck cancer. In a
2011 study, people with oral and oropharyngeal
cancer said that they lacked knowledge about
this type of cancer, and therefore did not report
to the doctor earlier.(34)
60% of head and neck cancer patients say they
were given written information about the
type of cancer that they had, and that it was
easy to understand. This compares to 71% of
cancer patients overall.(35)
The way the diagnosis of head and neck cancer
is given and the availability of information and
support at this point is of the utmost importance
to patients. However, a survey carried out by
the National Cancer Alliance contains examples
of insensitive communication by doctors,
and the resulting distress for both patients and
their partners.(23)
Not specific to people with head
and neck cancer
Not specific to people with head
and neck cancer
Cancer affects people physically, emotionally
and financially. However, the emotional effects
are often the most neglected and last the
longest even after treatment is finished.(37)
A significant proportion of newly-diagnosed
patients undergoing cancer treatment have
unmet needs. The most common needs
include information needs, physical needs
and psychological needs. The level of unmet
needs is highest after diagnosis and at the
start of treatment, and decreases over time.(10)
Although a certain amount of emotional
distress is common, particularly around the
time of a diagnosis, around half of all people
with cancer experience levels of anxiety and
depression severe enough to adversely affect
their quality of life.(37)
The strongest preference for information at
diagnosis is information about prognosis.
However, there are also many other information
needs such as side effects of treatment, impact
on family and friends, altered body image,
self care and risks of family developing the
disease.(11)
33
Contents
The cancer journey – Diagnosis
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Treatment
The rich picture on people with head and neck cancer
needs and experiences
TREATMENT
Most head and neck cancers are treated by surgery, radiotherapy
or a combination of both. Plastic or reconstructive surgery is
also often needed for patients with these cancers.(23)
What treatments do head and neck
cancer patients get?
Surgery
Surgery is one of the main forms of treatment for
head and neck cancers. The part of the mouth or
throat that is affected may be removed depending
on the exact location of the tumour.(39)
The percentage of head and neck cancer patients
treated within NHS hospitals in England with a
record of major surgical resection varies depending
on the site. Of all head and neck cancers, oral
cavity cancer (71.4%) has the highest percentage
of major surgical resections, whereas hypopharynx
cancer (42.1%) shows the lowest proportion.(40)
Radiotherapy
Radiotherapy is an intensive form of treatment that
uses high-energy rays to kill cancer cells. Head
and neck cancers account for around 5% of all
radiotherapy episodes in England (2009-2010).
There were 6,499 radiotherapy episodes and
151,858 radiotherapy attendances for head and
neck cancers.(41)
A study from the Oxford cancer intelligence unit
suggests that in England almost half (47.4%) of
head and neck cancer patients diagnosed between
2006 and 2008, received radiotherapy.(41)
34
External beam radiotherapy is the most common
way of giving radiotherapy to the head and neck
area, but some cancers can also be treated by
implanting radioactive material into the tumour and
leaving it for several days. This is known as internal
radiotherapy, or interstitial radiotherapy.(42)
Chemotherapy
Chemotherapy, a combination of anti-cancer
drugs, is normally given at the same time as
radiotherapy. This is known as chemo-radiation.
Chemotherapy may also be given before chemoradiation treatment, which is known as induction
chemotherapy. Very occasionally chemotherapy
is given before surgery to shrink the tumour and
make it easier to remove.(7)
Biological therapy
Biological therapies use substances that are
produced naturally in the body to destroy cancer
cells. Biological therapies like monoclonal antibodies
and cancer growth inhibitors are sometimes used to
treat head and neck cancers, and are mainly given
as part of cancer research trials.(15a)
Photodynamic therapy
Photodynamic therapy (PDT) uses a combination
of laser light of a specific wavelength and a lightsensitive drug to destroy cancer cells. In early stage
cancer of the head and neck PDT may be used to
try to cure the cancer and is usually given as part
of research trials. PDT can sometimes be used to
shrink an advanced cancer to reduce symptoms,
but it cannot cure an advanced cancer.(15c)
Contents
How many head and neck cancer
admissions are there and how many
head and neck cancer patients stay
in hospital (and for how long)?
In total, there were over 27,492 admissions
to NHS hospitals in England (emergency and
non-emergency) for head and neck cancers
during 2012-13.(43)
The median length of stay for head and neck
cancer patients who were admitted was between
1-5 days (depending on the specific type of head
and neck cancer) in 2012-13.(43)
Research has shown that for all cancers (not
head and neck specifically), those who are newly
diagnosed or near end of life are much more
likely to spend time in hospital.(45)
What can a person with head and
neck cancer expect from a typical
treatment regime?
Cancers affecting the head and neck are
uncommon so people with this type of cancer
are usually treated in specialist hospitals.
This can mean that patients need to travel
to receive treatment.
Treatment for most forms of head and neck
cancer has permanent effects on organs essential
for normal activities like breathing, speaking,
eating and drinking. As a result, many patients
facing treatment require expert support before,
during, and after treatment. Many are likely to
need rehabilitation over a sustained period.(23)
Head and neck cancers present special
challenges because of the complexity of the
anatomical structures and functions affected.
A variety of professionals are involved in treating
patients with these cancers, as part of a multidisciplinary team (MDT), including oral and
maxillofacial surgeons or ear, nose and throat
(ENT) surgeons, speech and language therapists,
dietitians, and dentists or oral hygienists.(23)
Surgery is one of the main forms of
treatment for head and neck cancers, along
with radiotherapy and chemotherapy.
Very small cancers can often be treated with
a simple surgical operation with no need to
stay in hospital overnight. If the cancer is larger,
surgery will often involve a hospital stay and
an operation under general anaesthetic.(39)
Sometimes the surgery may involve more than
one part of the head and neck, and may cause
scarring on the face or neck. Some people may
need to have plastic or reconstructive surgery
to their face.(39)
Radiotherapy for head and neck cancers is
usually given in combination with chemotherapy.
This is known as chemo-radiation. This may
be used instead of, or after surgery. Combined
treatment is thought to be more effective than
using either chemotherapy or radiotherapy
alone. However, radiotherapy may sometimes
be used alone if a person is not fit or well
enough to have chemo-radiation.(44)
35
Contents
The cancer journey – Treatment
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Treatment
The rich picture on people with head and neck cancer
How many people with head
and neck cancer have access
to a head and neck Clinical
Nurse Specialist (CNS)? (46)
There are currently 134 head and neck cancer
nurse specialists in England, who make up
6% of all Clinical Nurse Specialists in England.
Macmillan’s internal data suggests that we had
(as of June 2014) 122 Macmillan head and
neck cancer nurse posts across the UK.(47)
84% of people with head and neck cancers were
given the name of a Clinical Nurse Specialist
who would be in charge of their care. This is
compared to 93% of people with breast cancer.(48)
What does this mean for patients?
Patients with a Clinical Nurse Specialist are
more likely to be positive about their care
and treatment than patients without a Clinical
Nurse Specialist. This is particularly the case
with regards to verbal and written information,
involvement, information on financial support
and prescriptions, discharge information and
post discharge care and emotional support.(49)
Research suggests that clinical nurse specialists can
influence head and neck cancer treatment through
emphasis on symptom management, stopping
tobacco and alcohol intake, and on patient and
family education and care coordination.(50)
36
What other health conditions do
people with head and neck cancer
have? How does this affect their
treatment, survival, long-term effects
or experiences?
Patients who present with some of the most
common head and neck cancers often have
underlying health problems, linked to smoking
and alcohol consumption. Co-morbidities linked
to smoking and alcohol can complicate how
these cancers are managed, as fitness to undergo
treatment can be a key issue in determining
treatment options. Continuing to smoke and drink
during and after treatment can also have an
impact on recovery, and long-term survival.(23)
Macmillan has produced an ‘Impact Brief
on Clinical Nurse Specialists ’. This is an
evidence review, which more fully sets out
how our CNSs use their skills and expertise
in cancer care to provide technical and
emotional support, coordinate care services
and inform and advise patients on clinical as
well as practical issues, leading to positive
patient outcomes. The paper, along with
other Impact briefs, is available via the
Macmillan website, at
www.macmillan.org.uk/servicesimpact
Contents
‘During treatment I fell to just
under 8 stone, lost all sense of
taste, ate my last meal and then
was reliant on the peg tube.
Most of the skin around my
neck blistered and burnt from
the radiotherapy and I was on
morphine to ease the pain.’
Edward, 50
37
Contents
The cancer journey – Treatment
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Treatment
The rich picture on people with head and neck cancer
Financial
and medical needs
needs
Physical
Pain is commonly experienced by patients
with head and neck cancer. Evidence suggests
around 50% of head and neck patients report
pain before starting treatment, increasing to 81%
of patients who are undergoing treatment.(52)
Treatment for head and neck cancers can
cause problems with eating, swallowing,
breathing and speech.(23)
A study involving patients undergoing surgery
and radiotherapy for oral cancers demonstrated
that increasing supervision by a dietician
reduced the incidence of severe weight loss
during and after treatment.(23)
A 2013 study of people with head and neck
cancer found that weight loss of more than
10% during and directly after radiotherapy has
a significant impact on social eating, social
contact, and quality of life.(36)
58% of head and neck cancer patients who
said it was necessary said that hospital staff
gave them information about how to get
financial help or any benefits they might be
entitled to. This compares to 54% of cancer
patients overall.(53)
A 2012 survey found that a change in the type
of food presented a notable financial cost to
21% of people with head and neck cancer.(38)
Not specific to people with head
and neck cancer
The most common cost that people living with
cancer face is getting to and from their hospital
appointments. The cost of getting to and
from appointments affects 69% of people
with cancer and costs them, on average,
£170 a month.(13)
24% of cancer patients say that they were not
told by hospital staff that they could get free
prescriptions, and that they would have liked to
know about this.(61)
Costs associated with outpatient appointments hit
almost three-quarters (71%) of people living
with cancer, and over a quarter (28%) incurred
costs for inpatient appointments.(13)
33% of people with cancer spend an additional
£24 a month on household fuel bills as a
result of their cancer and/or its treatment.(13)
38
Contents
Emotional and
information psychological
needs
needs
Practical and
Treatment for head and neck cancer can have
severe side effects. It is therefore important
that patients should be educated about adverse
effects of treatment before it begins, so that
they know what problems may be anticipated,
when they are likely to occur, how to minimise
their impact and how long they may be expected
to last.(23)
70% of people needing emotional support
with head and neck cancer felt that they were
definitely given enough emotional support
from hospital staff during treatment. This is
compared to 73% of people with haematological
cancer and 74% of people with skin cancer.(57)
65% of head and neck cancer patients say
they were given written information about
their operation and that it was easy to
understand. This compares to 74% of cancer
patients overall.(55)
Amongst all cancer patients the overall
prevalence of psychological distress is 25%
among those who are undergoing, or have just
finished, cancer treatment.(56)
Not specific to people with head
and neck cancer
Not specific to people with head
and neck cancer
10% of people with cancer are not given
enough information about their condition and
treatment, while 2% are given too much.(54)
39
Contents
The cancer journey – Treatment
Understanding the numbers, needs and experiences of people affected by cancer
The rich picture on people with head and neck cancer
The cancer journey – Survivorship
needs and experiences
Survivorship
(post-treatment)
Why are cancer survivors (all cancer
survivors; not just head and neck
cancer survivors) not catered for
properly by the current system?
•One in six people (17%) who were
diagnosed with cancer more than 10 years
ago have not been visited at home by a friend
or family member for at least six months.(68)
The current system for cancer patients after
the end of treatment concentrates on medical
surveillance, and looking for recurrence.
However we know that this does not address
people’s needs:
Cancer survivors have greater health
needs than the general population
•39% who completed treatment in 2009/10 say
that no health or social care professional
talked them through the needs they might
have.(90)
• 94% experience physical health condition
problems in their first year after treatment.(59)
•78% of people with cancer have experienced
at least one physical health condition in
the last 12 months which can occur as a result
of cancer or its treatment.(59)
•62% of people with cancer have experienced
at least one of the psychological
conditions that can occur as a result of cancer
and its treatment.(59)
•40% of people with cancer with emotional
difficulties had not sought medical help or
other support.(67)
•23% of people with cancer lack support
from friends and family during treatment
and recovery.(68)
40
•90% of cancer survivors have visited their
GP and 45% visited a specialist doctor in
the last 12 months. This compares with
68% and 15% of the wider population.(91)
•Recent studies have shown that less than
25% of cancer patients have received a holistic
needs assessment and a care plan. Both of
these are essential in providing personalised
care for cancer patients and their carers.(91)
Macmillan and NHS England
are working to implement
personalised support for all
cancer survivors
The National Cancer Survivorship Initiative (NCSI)
was a partnership between the Department
of Health, Macmillan and NHS Improvement.
NCSI reports were produced in 2013, including
‘Living with and beyond cancer: Taking
Action to Improve Outcomes’, which informs
the direction of survivorship work in England, to
support commissioners, health service providers
and others to take the actions necessary to drive
improved survivorship outcomes.
Contents
The document was followed by: ‘Innovation
to implementation: Stratified pathways
of care for people living with or beyond
cancer: A “how to’ guide”’.
The documents set out what has been learned
about survivorship, including interventions that have
been tested and are ready to be spread across
England, and could make an immediate difference
to people affected by cancer. These include: A
key intervention which is the ‘Recovery Package’
consisting of:
•Structured Holistic Needs Assessment and
care planning,
•Treatment Summary to provide good
communication to primary care including
information about treatment, and the potential
short-and long-term consequences.
•Education and support events, such as Health
and Wellbeing Clinics, which give patients
information about lifestyle choices, signs and
symptoms of recurrence, getting back to work,
benefits and financial support.
•The Cancer Care Review carried out by the GP
six months following a diagnosis of cancer
Further key interventions include:
•Offering appropriate information including
information about work support needs onwards
referral to specialist vocational rehabilitation
services and financial support
•Offering advice on physical activity,
weight management and how to access
appropriate programmes.
Copyright © Macmillan Cancer Support 2013
Permission granted for use as seen, this notice must remain intact in all cases. All rights reserved.
41
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The cancer journey – Survivorship
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey – Survivorship
The rich picture on people with head and neck cancer
Financial
and medical needs
needs
Physical
Treatment for head and neck cancers often
has permanent effects on basic activities
like breathing, speaking, eating and drinking.
Patients undergoing any type of treatment
often need specialist support and many need
rehabilitation over a sustained period.(23)
Oral dysfunction, loss of appetite, deteriorated
social functioning and high levels of anxiety are
barriers for head and neck cancer patients to
return to work after treatment.(62)
Head and neck cancer patients often face a
number of physical, emotional and social
issues linked to changing eating habits.(58)
Among cancer patients the main barrier to
accessing benefits is a lack of knowledge
about benefit entitlement. This outweighs
factors such as the perceived stigma of benefits
and concerns about benefit fraud. Some people
affected by cancer do not know that they can
claim benefits even when they have completed
initial treatment.(60)
Not specific to people with head
and neck cancer
33% of all people living with cancer find
participation in vigorous activities very
difficult or report not being able to do them at
all, while 16% find performing physical activities
very difficult.(59)
42
Not specific to people with head
and neck cancer
Contents
Emotional and
information psychological
needs
needs
Practical and
Of those patients who said they needed it,
only 56% of head and neck cancer patients said
they were definitely given enough care and
help from health or social services after leaving
hospital.(64)
For head and neck cancer patients information
on the chances of recurrence, radiotherapy,
and how surgery might affect functions such as
speaking or eating are key areas of information.(65)
Not specific to people with head
and neck cancer
Many cancer outpatients feel that their
information needs are not being met.
The most common areas of complaint are
the lack of genetic information and information
about lifestyle changes, and help with worries
about spread or recurrence.(63)
High levels of self-consciousness of
appearance have been found amongst patients
with head and neck cancer.(65)
Patients with head and neck cancer have been
found to be more frequently distressed than
patients with other cancers.(66)
A study in England found that one-third of head
and neck cancer patient respondents reported
substantial problems with sexual interest
and enjoyment, and one-quarter reported
problems with intimacy.(69)
Not specific to people with head
and neck cancer
23% of people living with cancer report poor
emotional well-being.(59)
Emotional and psychological long-term side
effects of cancer and its treatment include
depression, anxiety and post-traumatic
stress disorder (PTSD).(67)
In the year following diagnosis, around 1 in 10
people living with or beyond cancer experience
symptoms of anxiety and depression so
severe that they need specialist psychological
or psychiatric services.(37)
43
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The cancer journey – Survivorship
Understanding the numbers, needs and experiences of people affected by cancer
The rich picture on people with head and neck cancer
The cancer journey –
Progressive illness and end of life
needs and experiences
progressive
illness and
end of life
What health data do we have on
head and neck cancer patients with
progressive illness?
There is currently no specific data on head and
neck cancer patients with progressive illness.
How many head and neck patients
are at the end of life?
There is currently no specific data on how many
head and neck cancer patients are at end of life.
What is the impact of giving patients
palliative care?
How many cancer deaths there are
in each setting?
Data on place of death is not available broken
down by cancer type. However for all cancers,
we know that cancer deaths in England & Wales
account for 90% of all deaths in hospices, 39% of
all deaths at home, 23% of all deaths in hospital,
18% of all deaths occur in care homes, 19% of
all deaths in communal establishments and 23%
of all deaths elsewhere.(6b)
For further information, visit the
National Council for Palliative Care website,
www.ncpc.org.uk
The National Institute for Clinical Excellence
(NICE) has defined supportive and palliative care
for people with cancer. With some modification
the definition can be used for people with any
life-threatening condition: “Palliative care is the
active holistic care of patients with advanced
progressive illness. Management of pain and
other symptoms and provision of psychological,
social and spiritual support is paramount. The
goal of palliative care is the achievement of
the best quality of life for patients and their
families. Many aspects of palliative care are also
applicable earlier in the course of the illness in
conjunction with other treatments.”(71)
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How many cancer deaths there are in each setting?*(73)
Hospital
38%
Home
(own residence)
30%
Hospice
18%
Care and
nursing home
13%
*Does not add up
to 100% due to rounding.
45
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The cancer journey –
Progressive illness and end of life
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey –
Progressive illness and end of life
The rich picture on people with head and neck cancer
To what extent do 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 (20).
However, only 30% of those who die from cancer
actually die at their home or own residence (6b).
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‘With my husband’s prognosis
it’s so important that he gets
as good a quality of life as
possible…without Macmillan’s
advice and help we would
never have managed to claim
the benefits we did and for
that we are so grateful.’
Jane, 58, carer for her husband who
has terminal head and neck cancer.
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The cancer journey –
Progressive illness and end of life
Understanding the numbers, needs and experiences of people affected by cancer
The cancer journey –
Progressive illness and end of life
The rich picture on people with head and neck cancer
Financial
and medical needs
needs
Physical
For head and neck patients with late stage
disease, good nursing care and palliative
measures to help them eat and breathe
are crucial.(23)
Not specific to people with head
and neck cancer
457,000 people (not just those with cancer)
need good palliative care services every year in
England, but around 92,000 people are not
being reached.(75)
Various symptoms are very common in
advanced cancer, with patients experiencing
an average of 13 symptoms on admission to
hospital.(76)
The most common symptoms experienced by
more than half of people during their last two
weeks of life include shortness of breath,
pain, and confusion.(77)
Not specific to people with head
and neck cancer
“According to a 2010 Macmillan report, 36%
of all people with terminal cancer did not
claim the benefits they were entitled to.
This amounts to over £90m.(78)”
People with a terminal diagnosis who wish to
travel may have their travel insurance cover
refused by insurance companies, or be offered
cover at prohibitively high premiums, stopping
them from fulfilling their wishes.(79)
The death of a partner has been shown to be a
trigger for claiming income support.(80)
Anxiety about financial insecurity is common in
the days and weeks after a partner has died, but
uncertainties can extend into the first or second
year after death.(81)
A study on financial impact has revealed that,
after a partner’s death, the number of women
feeling financially worse off doubled from 24% to
48%. The number of men who felt worse off also
increased from 19% to 30% as a result of their
partner’s death.(8)
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Contents
Emotional and
information psychological
needs
needs
Practical and
Not specific to people with head
and neck cancer
Not specific to people with head
and neck cancer
Cancer patients and their families often want
information about how long they may have to
live after hearing that their cancer is terminal.
However, 31% of doctors tend to overestimate the survival times of terminally ill
cancer patients.(82)
Cancer patients approaching death suffer
more psychological distress.(56)
Those who are older, male, from ethnic
minorities, not married, lacking in home
care, or socio-economically disadvantaged
are all less likely to access community
palliative care services.(83)
83% of people say they are scared of dying
in pain, while 67% say they are scared of dying
alone, and 62% are scared of being told they
are dying.(84)
Amongst all cancer patients receiving
palliative care the overall prevalence of
psychological distress is 59%.(56)
A survey by Macmillan of people who have
received a cancer diagnosis found that 57%
would like to spend the last weeks and
days of their life at home. This rose to 73%
if all their concerns, which included access to
round the clock care, about dying at home
were addressed. Only 1% of respondents would
choose to die in hospital.(85)
49
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The cancer journey –
Progressive illness and end of life
Understanding the numbers, needs and experiences of people affected by cancer
Lifestyle and perceptions
The rich picture on people with head and neck cancer
lifestyle and
percePtions
This section attempts to give an
indication of the typical profile
of people living with head and
neck cancer, although we know
that there is huge variation
within the population. This
section also provides insight
into perceptions about head
and neck cancer.
What is the profile of the
average person living with
head and neck cancer?
There is some dissimilarity in the profile of
the average person living with different types
of head and neck cancer. Both cancer of the
oral cavity and laryngeal cancer, the two most
common types of head and neck cancer, can
affect men and women, but both are more
common in men. There are more new cases of
oral cancer in men than women at a ratio of
2:1(17), and in new cases of laryngeal cancer
there is a male to female ratio of almost 5:1.(18)
Asian women are much more likely to be
affected by cancers of the mouth than women
of White or Black ethnic origin. Comparable
data is not available for other types of head
and neck cancer.(19)
Oral cancer incidence is strongly related to age,
though the patterns by age are quite different
for men and women. Oral cancer is most
common in men between the ages of 60-69,
before falling in the over 70s, whilst in women
it is most common in those aged over 85.(17)
Laryngeal cancer is rarely diagnosed in
people younger than 40, but incidence
rises steeply thereafter, peaking in people
aged 70-74.(18)
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What is the demographic breakdown/ In addition to the above, there are two Types
market segmentation of the 62,530
within Group J (Claimants Cultures) and
(86)
head and neck cancer patients?
Group K (Upper Floor Living) who are
We have analysed England hospital episode
statistics and compared this to the general
population to see which MOSAIC* groups and
types are more prevalent amongst head and
neck cancer patients attending hospital. We
believe the correlations seen in England will be
broadly similar to those seen in the other three
UK nations, and so this insight could be applied
UK-wide.
Amongst head and neck cancer patients, the
following MOSAIC* group shows significantly
greater than average representation:
Group L: Elderly Needs (elderly people
reliant on state support): People in Group L
are usually pensioners who may be struggling
with the responsibility of looking after the family
house and garden. Most of these people are
in their 70s, 80s or 90s. Most of them are
on low pension incomes. They tend to live in
various types of home, including nursing homes,
sheltered accommodation, their own family
home, or a down-sized property.
In addition to Group L, the following MOSAIC*
group shows greater than average representation
amongst head and neck cancer patients:
also well-represented amongst head and
neck patients:
• Group J, Type 42: Worn Out Workers
• Group K, Type 47: Deprived View
What are the typical leisure activities/
where they shop/what media they
consume/what they do? (86)
• Group L: Elderly Needs: People in this group
tend to be less physically active. Watching TV
is popular as is shopping in charity shops.
They tend to lack familiarity with IT, so most of
the people in this group receive information
from watching TV and daily newspapers, and
most are not using the internet.
• Group E: Active Retirement. Holidays, cruises
and dining out for those who are well-off.
Reading books, doing crosswords, knitting and
looking after grandchildren are also popular
activities. They tend to read national daily
newspapers every day.
*For more detail and definitions see
www.experian.co.uk/business-strategies/
mosaic-uk-2009.html
Group E: Active Retirement (active elderly
people living in pleasant retirement
locations): People in Group E are mostly people
aged over 65 whose children have grown up
and who, on retirement, have decided to move
to a retirement community among people 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.
51
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Lifestyle and perceptions
Understanding the numbers, needs and experiences of people affected by cancer
Lifestyle and perceptions
The rich picture on people with head and neck cancer
What are people affected by head and neck cancer saying about
their lives both before and after a cancer diagnosis?
Before:
‘I didn’t know it was there, I just had a bit
of a sore throat every now and again.
I just got on with it and took pain killers.’
Samantha, 39, Northern Ireland.
‘I started to notice what felt like a bit
of food trapped at the back of my
mouth. I looked in my mouth in the
mirror and I could see a little white
bobble at the back of my throat.
I went to my doctor and initially
they treated me for tonsillitis, giving
me antibiotics. Nothing changed
and I went backwards and
forwards to the doctors for about
5 weeks before they referred me to
an ear, nose and throat specialist.’
David, 52, South West.
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Contents
After:
‘When this happens to you and you
look at yourself in the mirror you
wonder what on earth you are going
to do… There is a future. Yes, it’s
life-changing but it’s not the end of
the world.’
Philip, 63, London.
‘After treatment it was a shock to be
a healthy person again. I struggled to
motivate myself and found that I didn’t
have courage to be independent again.’
Laura, 37, South East.
‘It’s just nice to speak to people
who’ve been in similar situations.
When you have a hard day and can’t
do something, it’s good to hear it can
and does get better. Other people’s
stories can be inspirational.’
Sophie, 33, North East.
53
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Lifestyle and perceptions
Understanding the numbers, needs and experiences of people affected by cancer
Lifestyle and perceptions
The rich picture on people with head and neck cancer
How does people’s fear of head and neck cancer compare to
actual survival rates?
A 2011 study by Cancer Research UK surveyed people’s fear of certain cancer types. However, head
and neck cancer was not included in the research. Instead of showing the results of that research, we
devote this page to a different set of results from the same survey which examined how people’s fear
of cancer compares to other feared diseases.
How much do people fear cancer? (87)
I don’t fear getting any condition/disease 10%
Don’t know/prefer not to say 8%
Diabetes 1%
HIV 2%
Multiple sclerosis 2%
Heart disease 3%
Stroke 5%
Motor neurone disease 7%
Alzheimer’s
25%
Cancer
54
35%
Contents
Understanding the numbers, needs and experiences of people affected by cancer
55
Lifestyle and perceptions
35% of people in the UK fear cancer
more than other life-threatening
conditions, such as Alzheimer’s,
stroke and heart disease.
Contents
Lifestyle and perceptions
The rich picture on people with head and neck cancer
What our head and neck cancer online Macmillan Community
members are saying…(88)
How the media* portrays head and neck cancer…(89)
*UK national daily newspapers
Note: these ‘word clouds’ give greater prominence to words that appear more frequently
in the source text.
56
Contents
Understanding the numbers, needs and experiences of people affected by cancer
Lifestyle and perceptions
What does this mean? What do we
want to change in terms of people’s
perceptions?
Macmillan hosts online discussions on its website;
we have analysed the frequency of words used in
the discussions relating to head and neck cancer
compared to the frequency of words used in UK
media articles where head and neck cancer is
the subject. The results are summarised here:
• The media reports on head and neck cancer
clearly focus on the causes of the disease.
The most frequent words include ‘alcohol’ and
‘drinking’. Interestingly, neither of these words
appear in the online community word cloud.
• The online community instead concentrates
on the emotional and physical side effects
of head and neck cancer and its treatment.
Words such as ‘shock’, ‘positive’, ‘horrific’
and ‘strong’ show something of the emotional
rollercoaster which faces people living
with cancer.
• The terms ‘mum’ and ‘family’ feature
prominently in the online community
discussions, probably referring to loved ones
who have head and neck cancer. The online
community may include many family members
who are carers and rely on this community for
support that is not readily available elsewhere.
57
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References
The rich picture on people with head and neck cancer
Quotes
The quotes on pages 23, 27, 37, 47, 52 and 53 are real quotes from people with head and neck 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 head and neck case study who has kindly agreed to be featured in this
publication.
References
References
1.
Macmillan Cancer Support. Cancer Information section on head and neck cancers.
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Headneck/Aboutheadneckcancers/
Headneckcancers.aspx (Accessed September 2014)
2. 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)
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(Accessed September 2014)
3b. ISD Scotland. Cancer Incidence in Scotland 2012. http://www.isdscotland.org/Health-Topics/Cancer/
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3c. Welsh Cancer Intelligence and Surveillance Unit. Incidence Trends. 2012 http://www.wcisu.wales.nhs.uk/
officical-statistics-exel-files-of-trend (Accessed September 2014)
3d. Northern Ireland Cancer Registry. Cancer Data 2012. http://www.qub.ac.uk/research-centres/nicr/
CancerData/OnlineStatistics (Accessed September 2014)
4. Personal Communication: NCIN. 2014. Macmillan-NCIN work plan. Segmenting the cancer survivor
population: by cancer type, 20-year prevalence at the end of 2010, UK. Data sourced and presented
in collaboration with the Welsh Cancer Intelligence and Surveillance Unit, Health Intelligence Division,
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Registry. The analysis is based on patients diagnosed with cancer between 1991 and 2010 in England,
Wales and Scotland, and between 1993 and 2010 in Northern Ireland. To ensure that patients,
rather than tumours, were counted, only the first diagnosed tumour (excluding non-melanoma skin
cancer) of each cancer type in each patient was included in the analysis. The numbers in this analysis
may not agree with those published elsewhere due to slight differences in methodologies, periods of
observation, datasets, and rounding.
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html?edition=tcm%3A77-320365 (Accessed September 2014)
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6a. Northern Ireland Cancer Registry. Cancer Data 2012. http://www.qub.ac.uk/research-centres/nicr/
CancerData/OnlineStatistics (Accessed September 2014)
6b. Office for National Statistics and London School of Hygiene and Tropical Medicine. Mortality statistics.
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September 2014)
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undergoing active cancer treatment. Support Care Cancer. 2012. 20:1377-1394.
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Adv Pract Oncol. 2014. 5(2): 115-122.
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officical-statistics-exel-files-of-trend (Accessed September 2014)
13. Macmillan Cancer Support. Cancer’s Hidden Price Tag: Revealing the Costs Behind the Illness. 2013.
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archive/demography/publications/annual_reports/2011/Table6.4_2011.xls (Accessed July 2013)
14b. Northern Ireland Cancer Registry. Cancer Incidence 2011. Personal communication from the Northern
Ireland Cancer Registry.
15a. Macmillan Cancer Support. Biological or targeted therapies. http://www.macmillan.org.uk/
Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Biologicaltherapies.aspx
(Accessed September 2014)
15b. Cancer Research UK. Laryngeal Cancer Survival Statistics. http://www.cancerresearchuk.org/cancerinfo/cancerstats/types/larynx/survival/ (Accessed September 2014)
15c. Macmillan Cancer Support. Photodynamic Therapy (PDT). http://www.macmillan.org.uk/
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15d. Cancer Research UK. Laryngeal Cancer Mortality Statistics. http://www.cancerresearchuk.org/cancerinfo/cancerstats/types/larynx/mortality/ (Accessed Sept 2013)
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types/oral/incidence/ (Accessed September 2014)
59
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References
Understanding the numbers, needs and experiences of people affected by cancer
References
The rich picture on people with head and neck cancer
18. Cancer Research UK. Laryngeal Cancer Incidence Statistics. http://info.cancerresearchuk.org/
cancerstats/types/larynx/incidence/ (Accessed September 2014)
19. NCIN. Cancer Incidence and Survival by Major ethnic group. England, 2002-2006. www.ncin.org.uk/
view?rid=75 (Accessed September 2014)
20. Macmillan Cancer Support. February 2010 online survey of 1,019 UK adults living with cancer. Survey
results have not been weighted.
21. Oxford Cancer Intelligence Unit. United Kingdom head and neck cancer E-atlas. http://www.ociu.nhs.
uk/data/eAtlas/atlas.html (Accessed September 2014).
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33. Macmillan Cancer Support/RDSi. Telephone survey of 1,137 people affected by cancer:942 patients,
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35. NHS England. Cancer Patient Experience Survey 2013. Q14. http://www.quality-health.co.uk/resources/
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(Accessed September 2014)
36. Languis JAE, et al. More than 10% weight loss in head and neck cancer patients during radiotherapy is
independently associated with deterioration in quality of life. Nutr Cancer. 2013. 65(1): 76-83.
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relationship to health related quality of life. Brit J Oral Max Surg. 2012. 50(5): 410-416.
39. Macmillan Cancer Support. Surgery for head and neck cancer. http://www.macmillan.org.uk/
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September 2014)
40. Oxford Cancer Intelligence Unit. Major surgical resections in England: head and neck cancers.
http://www.ncin.org.uk/view?rid=1393 (Accessed September 2014)
41. National Cancer Action Team. RTDS Annual Report 2009-2010. https://www.gov.uk/government/
uploads/system/uploads/attachment_data/file/215528/dh_128868.pdf (Accessed September 2014)
42. Oxford Cancer Intelligence Unit. Travel times and distances to radiotherapy centres for head and neck
cancer patients in England (2006-8). www.ncin.org.uk/view?rid=1217 (Accessed September 2014)
43. The Health and Social Care Information Centre. Hospital Episode Statistics, Admitted Patient Care –
England, 2012-13. http://www.hscic.gov.uk/article/2021/Website-Search?productid=13264&q=Admi
tted+Patient+Care&sort=Relevance&size=10&page=1&area=both#top (Accessed September 2014)
Please note admission figures have been calculated using the ICD codes Macmillan have used when
estimating prevalence for head and neck cancer (ICD C00-14 and C30-32), which excludes some ICD
codes that are included by other organisations.
44. Macmillan Cancer Support. Radiotherapy for head and neck cancer. http://www.macmillan.org.uk/
Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Radiotherapy.aspx (Accessed
September 2014)
45. Maddams J, et al. Levels of acute health service use among cancer survivors in the United Kingdom. Eur
J Cancer. 2011. 47(14): 2211-2220.
46. Centre for Workforce Intelligence. Cancer CNS census. 2011. http://www.cfwi.org.uk/2014-adultcancer-specialist-nurse-census/at_download/attachment4 (Accessed September 2014)
47. Macmillan Cancer Support. Internal UK.PS@Mac data.
48. NHS England. Cancer Patient Experience Survey 2013. Q21. http://www.quality-health.co.uk/resources/
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(Accessed September 2014)
49. NHS England. Cancer Patient Experience Survey 2013. http://www.quality-health.co.uk/resources/
surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/
(Accessed September 2014)
50. Kagan SH. The influence of nursing in head and neck cancer management. Curr Opin Oncol. 2009.
21(3):248-253
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Understanding the numbers, needs and experiences of people affected by cancer
The rich picture on people with head and neck cancer
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66. Singer S, et al. Predictors of emotional distress in patients with head and neck cancer.
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68. Macmillan Cancer Support. Facing the Fight Alone. 2013. http://www.macmillan.org.uk/Documents/
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69. Low C, et al. Issues of intimacy and sexual dysfunction following major head and neck cancer
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70. Schwartz LH, Ozzahin M, Zhang CN, Tonboul E, et al. Synchronous and metachronous head and neck
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71. The National Council for Palliative Care. Palliative care explained. http://www.ncpc.org.uk/palliativecare-explained (Accessed September 2014)
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73. Office for National Statistics. National Bereavement Survey (VOICES) 2012. http://www.ons.gov.uk/
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74. Macmillan Feb 2010 online survey of 1,019 people living with cancer. Respondents were sourced from
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Survey results are unweighted.
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Last 2 Weeks of Life. Am J Hosp Palliat Care. 2013. 30(6): 601-616.
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macmillan.org.uk/Aboutus/News/Latest_News/CancerPatientsLoseOutOnMillionsOfUnclaimedBenefits.
aspx (accessed September 2014)
79. Macmillan Cancer Support. Getting travel insurance when you have been affected by cancer.
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Gettingtravelinsurance.aspx (Accessed September 2014).
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81. Corden A, et al. Economic Components of Grief. Death Studies. 2013. 37(8): 725-749.
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Understanding the numbers, needs and experiences of people affected by cancer
References
The rich picture on people with head and neck cancer
85. Macmillan Feb 2010 online survey of 1,019 people living with cancer. Respondents were sourced from
Macmillan’s database of people affected by cancer in the UK who have agreed to take part in research.
Survey results are unweighted.
86. Macmillan Cancer Support analysis, July 2012. Data was extracted from Hospital Episode Statistics
(HES) database for the NHS financial year 2010/11 at episode level for all types of cancer, excluding
C44 (other malignant neoplasms of skin). The data covers England only, but it is assumed that
the patterns seen in England will be broadly similar in the other UK nations. The earliest hospital
admittance was taken for each person within the NHS 2010/11 financial year. MOSAIC UK profiles
were created for hospital admittances for people living with each of the top 10 cancer types (and
a further profile for all other cancers combined, ie the rarer cancers) and compared to the base
population. Base population (ie population of England) was population at the end of [December 2008 –
to confirm]. HES records where the age of the patient was not recorded were removed from all analyses.
Only records with a valid MOSAIC Type were analysed, however the number of these was small, and
limited largely to data on people aged 0-14. MOSAIC profiles are built from 440 data elements,
collated by Experian Ltd. For further details, visit www.experian.co.uk/business-strategies/mosaicuk-2009.html
87. Cancer Research UK. People Fear Cancer More Than Other Serious Illnesses. http://www.
cancerresearchuk.org/about-us/cancer-news/press-release/people-fear-cancer-more-than-otherserious-illness (Accessed September 2014)
88. 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 head and neck
cancer” group, on 16 August 2012)
89. Macmillan Cancer Support/Factiva. 2012. Word cloud formed from an analysis on 16 August 2012
using www.wordle.net of the 100 most recent UK national daily newspaper articles where the key
words of “head and neck cancer”, “throat cancer” or “mouth cancer” appeared at least once. The most
frequent words are shown in larger fonts than less frequent words. Dates ranged from 6 February 2012
to 16 August 2012. UK national daily newspapers included: The Metro, The Times, The Daily Mail, The
Mirror, The Sun, The Daily Express, The Guardian, The Telegraph and The Independent.
90. Macmillan Cancer Support/YouGov online survey of 1,740 UK adults living with cancer. Fieldwork
conducted 26 July–9 August 2010. Survey results unweighted.
91. National Cancer Survivorship Initiative. Assessment and care planning. http://www.ncsi.org.uk/whatwe-are-doing/assessment-care-planning/ (Accessed September 2014)
92. The Cochrane Collaboration. Screening programmes for the early detection and prevention of oral
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93. Macmillan Cancer Support. Radiotherapy for head and neck cancer. http://www.macmillan.org.uk/
Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Radiotherapy.aspx (Accessed
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94.
64
Macmillan-NCIN work plan. Segmenting the cancer survivor population. www.ncin.org.uk/
view?rid=2493 (Accessed September 2014). The analysis is based on patients diagnosed with cancer
between 1991 and 2010. To ensure that patients, rather than tumours, were counted, only the
first diagnosed tumour (excluding non-melanoma skin cancer) in each patient was included in the
analysis. Anyone who died or left the country in the period, or were aged over 99 at diagnosis or
over 105 at the end of 2010, were removed from the study. The numbers in this analysis may not
agree with those published elsewhere due to slight differences in methodologies, periods of
observation, datasets, and rounding.
Contents
appendix a
jargon buster
Not sure of some of the terms used
in this document? Our handy jargon
buster should help you out.
(i) Health data terms
Incidence: When we talk about ‘cancer incidence’
we mean the number of people who are newly
diagnosed with cancer within a given time-frame,
usually one calendar year. The data can be ‘cut’
in a number of ways, for example by cancer
type (breast, prostate, lung, colorectal, etc) or by
gender, age, etc. The latest data we have is for
2012, and we know that over 300,000 people are
newly diagnosed with cancer in the UK every year.
Incidence can sometimes be given as a rate (per
head of population).
Mortality: When we talk about ‘cancer mortality’
mean the number of people who die from cancer
within a given time-frame, usually one calendar year.
The latest data we have is for 2012, and we know
that over 150,000 people die from cancer in the UK
every year. Mortality can sometimes be given as a
rate (per head of population).
Prevalence: When we talk about ‘cancer
prevalence’ we mean the number of people
who are still alive and who have had, within a
defined period, a cancer diagnosis. It equates
to the number of people living with cancer. Any
prevalence figure is for a snapshot (set point in
time). The latest snapshot we have was made in
2015, and we estimate that there are 2.5 million
people living with cancer in the UK. Some data
are only available and presented for 20-year
prevalence (i.e. anyone with a cancer diagnosis
within a 20 year period). Prevalence can sometimes
be given as a rate (per head of population).
Cancer statistics often use one-year or five-year
survival rates. Relative survival (the standardised
measure used) is a means of accounting for
background mortality and can be interpreted as
the survival from cancer in the absence of other
causes of death. Survival rates do not specify
whether cancer survivors are still undergoing
treatment after the time period in question or
whether they are cancer-free (in remission).
(ii) Other terms
Co-morbidities: This means either the presence of
one or more disorders (or diseases) in addition to
a primary disease or disorder, or the effect of such
additional disorders or diseases.
Curative treatment: When we talk about curative
treatment for someone with cancer, we talk about
treatments intended to cure the cancer; this usually
mean the removal of a cancerous tumour. It works
best on localised cancers that haven’t yet spread to
other parts of the body, and is often followed by
radiotherapy and/or chemotherapy to make sure all
cancerous cells have been removed.
Palliative treatment: Palliative treatment is only
used to ease pain, disability or other complications
that usually come with advanced cancer. Palliative
treatment may improve quality of life and mediumterm survival, but it is not a cure or anti-cancer
treatment. However palliative treatment can be
given in addition to curative treatment in order to
help people cope with the physical and emotional
issues that accompany a diagnosis of cancer.
For further support, please contact
[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.
65
Contents
Appendix A – Jargon buster
Understanding the numbers, needs and experiences of people affected by cancer
Notes
The rich picture on people with head and neck cancer
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 The Rich Picture on people living with breast cancer The Rich Picture on people living with prostate cancer The Rich Picture on people living with lung cancer The Rich Picture on people living with cancer of the uterus The Rich Picture on people living with non-Hodgkin lymphoma The Rich Picture on people living with rarer cancers The Rich Picture on people living with malignant melanoma The Rich Picture on people living with head & neck cancer
The Rich Picture on people living with colorectal cancer The Rich Picture on people living with bladder cancer (MAC13846_11_14)
(MAC13838_11_14)
(MAC13839_11_14)
(MAC13848_11_14)
(MAC13844_11_14)
(MAC13843_11_14)
(MAC13847_11_14)
(MAC13841_11_14)
(MAC13845_11_14)
(MAC13840_11_14)
(MAC13842_11_14)
The Rich Pictures on age groups
The Rich Picture on people of working age with cancer The Rich Picture on children with cancer The Rich Picture on older people with cancer The Rich Pictureon teenagers and young adults with cancer (MAC13732_14)
(MAC14660_14)
(MAC13668_11_14)
(MAC14661_14)
Other Rich Pictures
The Rich Picture on people at end of life
The Rich Picture on carers of people with cancer The Rich Picture on people with cancer from BME groups
The Emerging Picture on LGBT people with cancer (MAC13841_14)
(MAC13731_10_14)
(MAC14662_14)
(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: MAC13845_11_14
©Macmillan Cancer Support, registered charity in England and Wales (261017),
Scotland (SC039907) and the Isle of Man (604).
Contents