Young Adults with Cancer in Australia

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                 Young Adults with Cancer in Australia

                             – A Snapshot

Nicole Shipard          June 2008
                                 0421 191 914


This paper provides a comprehensive portrayal of the population of interest for the

projected study of the "Lived Experience of Young Adults (aged 25-40+ years) and

cancer in Australia". To begin, the term 'young adult', predominantly in the context of

cancer, is defined. This along with the demographic and social constructs of young

adults in Australia helps depict the unique characteristics of this age group. Following

on from this is a snapshot of cancer and the young adult which includes: cancer

incidence in Australia; cancer types; diagnosis; treatment types/locations and cancer

survival for this target population. In conclusion a brief summary drawing the main

issues together is the provided.

Defining ‘Young Adults’

There appears to be no accepted definition of the term and age for ‘young adult’ (YA).

The World Health Organisation defines 'youth' from 15-24 years (World Health

Organization (WHO), 2006). In the context of cancer, 'young people' is sometimes used

as a composite term for 15-24 year olds (Thomas et al., 2006). More recently, the

acronym 'AYA' (which stands for Adolescents and Young Adults) has been used for

cancer research related to young people in Australia and overseas (AYAO PRG, 2006,

Dockser Marcus, 2005, Bleyer, 2007, Enskar and von Essen, 2007, Evan and Zeltzer,

2006, Schmidt, 2006, Smith et al., 2007, Zebrack et al., 2006a, Zebrack et al., 2006). In

2006, The National Cancer Institute (NCI) along with other affiliates formed the

Adolescent and Young Adult Oncology Program Review Group (AYAO PRG) who

conducted an evaluation of the current status of a cancer diagnosis in YAs between age

15 to 40 years (Schmidt, 2006). A report titled Closing the Gap: Research and Care

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Imperatives for Adolescents and Young Adults with Cancer was produced that


          …that from a psychosocial perspective, the majority of cancer patients up to
          age 40 are more likely to feel they have more in common with other younger
          patients than with middle aged or older patients (AYAO PRG, 2006, p. 4).

In 2006, the AYAO PRG determined that individuals up to age 39 years should be

considered part of the AYA population (AYAO PRG, 2006). Table 1 below defines the

AYAO PRG rationale for the selecting the new upper age limit.

Table 1: Rational for updating the upper age limit of YA with Cancer (source: AYAO PRG
2006, p.4.)

    1. The biologic and physiologic maturity that occurs around the time of puberty and achievement of
       full stature remains relatively stable during the 20s and 30s.

    2. Between ages 15 and 39, patients have passed puberty but have not yet experienced the effects of
       hormonal decline (menopause for females) or immune response decline.

    3. Few have developed the chronic medical conditions (e.g., atherosclerosis, hypertension, type II
       diabetes, alcoholism) that cause organ dysfunction and the need for concomitant medications that
       can influence oncologic decision-making and the care of older patients.

    4. From a psychosocial perspective, the majority of patients up to age 40 are more likely to feel they
       have more in common with other younger patients than with middle aged or older patients

For the purposes of this study, YAs are defined as persons aged between 25-40+ years.

This range in age has been selected by the researcher as gaps in the literature highlight a

deficit in cancer survival rates, cancer treatments and cancer support services for this

age group, more specifically here in Australia. However, it can be assumed that many

issues relevant to the treatment and support of cancer with this age group may also be

relevant for persons outside this range. The AYAO PRG (2006) advise it is important to

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consider more than chronological age with regard to research and care delivery

recommendations for AYA cancer patients and survivors. This assumption is further

supported by Thomas et al. (2006) as they report the cognitive and psychosocial

maturation of YAs may be affected by life-stage factors such as the social and family

context of the person.

The demographic and social constructs of YA in Australia

People are born within a span of time, referred to as 'generations', in which societal

trends, technologies, and events significantly shaped them (McCrindle 2007).

Generational changes in factors such as incomes; living standards; family size and

living arrangements can have an effect on the communities where people live and the

provision and funding of services ranging from schools to hospitals (n, 2002). The

Macquarie Concise Dictionary defines generation as the 'term of years accepted as the

average difference of age between one generation of a family and the next' (Macquarie

University, 1998, p. 464). Those persons currently aged 25 to 40 years, form part of two

generations often referred to as 'Generation X and Generation Y' (ABS, 2005b).

In 2005, the proportion of people aged 15 to 44 years represented 42.8% of the

Australian population, and the median age was 36.6 years (ABS, 2005a). At present,

YAs is this age cohort (Generations X & Y) typically experience a number of transitions

and milestones such as: the change from living with parents to independent living;

buying their own home; starting or finishing education; entering the labour force; and

partnering and having children (ABS, 2005b). Furthermore, information obtained from

the ABS Australian Social Trends - 2005 suggests that in 2001 that 30% of YAs aged

20-29 were still living at home; the median age for first marriage was 29 years for men

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and 27 years for women; 23% of people aged 20-29 years had no religious affiliation;

and there were more YAs that participated in post-school education to obtain

qualifications than had been seen in the past (ABS, 2005b). Added to this is a continual

trend for YAs to delay parenthood, with the median age of mothers in 2005 giving birth

at 30.7 years (compared to 27.3 years in 1985) and the median age of fathers was 32.9

years in 2005, compared to 30.1 years in 1985 (ABS, 2005c). A woman's 20s are seen

physiologically as her 'prime' childbearing years, yet the fertility rates of young women

aged 20-24 years and teenagers continued to decline and women aged between 30-34

years have the highest fertility rate of all women in Australia (ABS, 2001).

Cancer incidence in Australia and the YA population

In 2006, cancer was second to cardiovascular disease as the leading cause of death,

respectively accounting for 30% and 34% of all registered deaths in Australia (ABS,

2006b). The median age of persons dying from cancer has continued to rise from 72

years in 1997 to 74.9 years in 2006; and the ratio of male (22,387) to female (17,366)

deaths in 2006 remained at 128.9 males per 100 females (ABS, 2006b). In 2001 there

were 88,398 new cases of cancer reported in Australia (ABS, 2006a). This number

increased almost 20% by 2006 to an estimated 106,000 newly diagnosed cases of cancer

(60,600 males and 45,400 females) (AIHW, 2003). Cancer is most prevalent in the 65+

age, with approximately 21% of the total cases of cancer being in this age group (ABS,


Cancer is the leading cause of death Australians aged 25-44 years (ABS, 2006b). There

has been a marked increase in incidence of cancer in young people seen in Australia and

internationally, for reasons that are not clear (Thomas et al., 2006). For example,

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between 1983 and 2001 the incidence of cancer in 15-30 years olds increased by over

30% (Thomas et al., 2006). In 2001 there were 7470 new cases of cancer in YAs aged

25-44 years (40% male; 60% female); this represents 8.4% of the total cancer

population (AIHW, 2003). It is estimated that by the year 2011, cancer in this age group

will increase by over 22% to 9148 new cases (AIHW et al., 2005).

Cancer types and the YA age group

In Australia, the 5 most common cancers in 2003 (excluding non-melanocytic skin

cancer) were prostate cancer (13,526 new cases), colorectal cancer (12,536), breast

cancer (11,889), melanoma (9,524) and lung cancer (8,249) (AIHW, 2003). Table 2

below contrasts the 5 most common types of cancer occurring within the Australian

male and female whole population and the YA population aged 25-44years, in 2003.

Table 2: The five most common cancers occurring in the Australian and YA (aged 25-
44years) male and female populations in 2003 (source: AIHW, 2003b)

          Males                                          Females
                                YA Males                                          YA Females
          (whole population)                             (whole population)
          prostate cancer
    1st                         testicular (659 cases)   breast cancer (11,788)   breast cancer (2445)
          colorectal cancer                              colorectal cancer
 2nd                            melanoma (584)                                    melanoma (1021)
          (6,857)                                        (5,679)

 3rd      melanoma (5,535)      lymphomas (311)          melanoma (3,989)         thyroid (418)

    4th   lung cancer (5,281)   colorectal (221)         lung cancer (2,968)      colorectal (393)

    5th   lymphoma (2,297)      brain & CNS (153).       lymphoma (1,832)         cervical cancer (266)

As can be seen in the above table, the Australian YA population (aged 25-44years)

differs in cancer incidence and cancer types to that of the whole population. For

example in YA men, testicular cancer is the most commonly occurring type of cancer

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with 659 new cases and brain & CNS cancer was the fifth most common with 153 new

cases. Figure 1 below highlights the 10 most common cancers for YA males in 2003.

                           head / neck
                                             kidney                   testis
                           thyroid                                    melanoma
                             4%                          28%
                 5%                                                   colorectal
                   5%                                                 brain / cns

             brain / cns

                 colorectal                                melanoma   thyroid
                    9%                                       24%
                                                                      head / neck
                                    13%                               kidney

Figure 1: The 10 most common cancer types in Australian males aged 25-44 years in 2003
(source: AIHW, 2003b)

When comparing Australian YA females (aged 25-44 years) to that of the whole female

population, several similar types of cancer are evident however; new types of cancer

also appear. For example, thyroid cancer is the third most common with 418 new cases

and cervical cancer was fifth most common with 266 new cases. The 10 most common

types for YA females can be seen in Figure 2 below.

Nicole Shipard                                     June 2008
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                                         brain / cns
                      ovary                  2%
                       3%               lung
                     3%                                           breast
                      lymphoma                                     45%

                 cervix                                                    cervix

                 colorectal                                                uterus

                              thyroid                  melanoma            lung
                                8%                       19%
                                                                           brain / cns

Figure 2: The 10 most common cancer types in Australian females aged 25-44 years in
2003 (source: AIHW, 2003b).

Cancer diagnosis and the YA

The distribution of tumor types across the YA age range overlaps somewhat with

pediatric cancers and those commonly occurring in older adults (AYAO PRG, 2006).

Furthermore, the group of cancers found in YAs that are uncommonly seen in older and

younger ages (noted in Figures 1 & 2 above), have unique signs and symptoms at the

time of diagnosis (Thomas et al., 2006, Bleyer, 2007). Empirical research to date

indicates YAs and their cancer types are distinguished by unique biological

characteristics (AYAO PRG, 2006). For example breast cancer in a 30-year-old woman

or colon cancer in a 35-year-old man may have biologic characteristics not found in

patients with the same diseases at 65 years of age, and these biologic differences may

have an affect on disease susceptibility, treatment response, and outcome (AYAO PRG,


Nicole Shipard                                          June 2008
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The vast majority of cancers diagnosed in YAs appear to be spontaneous and unrelated

to carcinogens in the environment; this contrasts with known etiologies and contributing

factors in older adults where many cancers have been strongly linked to environmental

causes (Bleyer, 2007). Additional to this, AYA delay a diagnosis of cancer as they

typically see themselves as unassailable to serious disease, causing them to ignore or

minimise symptoms and delay seeking medical attention (Bleyer, 2007). Delayed

diagnosis also is common because health care providers tend to have a low suspicion of

cancer in this population, attributing symptoms of cancer to fatigue, stress, or other

causes (AYAO PRG, 2006). Interestingly, the upper end of the YA age range also

shows a danger during diagnosis and treatment phases due to nontraditional health care.

An Australian study researching the use of nontraditional therapies in cancer patients

found the use of alternative treatments was most prevalent in YA cancer patients,

especially females or those with a higher education (Stephen et al., 1996). Additionally

Bleyer (2007) directs concern towards the use of such therapies, as the majority of AYA

cancer patients do not reveal information about the use of complementary therapies to

their physicians or care providers, which increase the risk of adverse interactions with

chemotherapy and radiotherapy when talking certain vitamins and antioxidants.

Treatment types and locations

Determining which specialist and/or treatment facility is most appropriate for AYA

patients varies from cancer to cancer and case to case (Dockser, 2005). However, YA

patients too frequently fall into a no-man’s land between pediatric and adult oncology

treatment centres (AYAO PRG, 2006). Thomas et al. (2006) have the same opinion that

AYAs with cancer fall into a ‘grey zone', and pose a series of questions that underline

the complexities related to this target group:

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       What age group are we really referring to, and why?; Is this group truly
       paediatric, is it adult or is it something distinct from either entity?; If the latter,
       what are its defining characteristics? And what are the psychosocial and
       developmental characteristics that define this age group? (p. 2).

Thomas et al. (2006) report that cancer patients at any age who have pediatric tumors

will benefit from the expertise of a pediatric oncologist. Additionally, pediatric

oncologists have pioneered therapies to preserve fertility, however opposing this;

services to facilitate gamete preservation are more limited in pediatric than in adult

centers (Bleyer, 2007). Historically, medical oncologists have based the dose intensity

of their chemotherapy regimens on their most common patients who, with a median age

at cancer diagnosis of 68 years, have more coexisting morbid conditions and tolerate

less therapy than their healthiest patients in the AYA age range (Bleyer, 2007).

Additionally, many of the established procedures for diagnostic imaging, biopsies,

pathologic evaluation, and staging are derived from the more common malignancies in

older adults; and as a result, treatment for AYAs may be less aggressive with

chemotherapy dosing than the pediatric oncologist whose patients, like young adults,

can tolerate higher doses (Bleyer, 2007).

Cancer survival in Australia and the YA population

In a report titled Cancer Survival in Australia 2001, a relative survival measure

(expressed as a %) is used to describe cancer populations that survive a specific number

of years after diagnosis (AIHW and AACR, 2001). Trends are given over three

diagnostic periods (1982-1986 / 1987-1991 / 1992-1997) and are also defined by age (0-

29 years / 30-39 years / 40-49 years / 50-59 years etc). Five-year relative survival

proportions increased in most age groups over the three diagnosis periods with the

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largest increases occurring for males (see Figure 3 below) aged 60–69 survival

increased by 17% and for females (see Figure 4 below) aged 50–59 increased by 12%.

Figure 3: All cancers five–year relative survival proportions: age at diagnosis by period of
diagnosis, males (source: AIHW and AACR, 2001, p.9)

Figure 4: All cancers five–year relative survival proportions: age at diagnosis by period of
diagnosis, females (source: AIHW and AACR, 2001, p.9)

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However these figures do not paint a true overall picture for the YA cancer population.

After subtracting the relative survival proportion averages of the 1982-1986 period from

the 1992-1997 period, it highlights that the YA age groups of 20-29 & 30-39 years

actually have the lowest increase rates of relative survival proportion compared to the

whole population. This can be seen diagrammatically in Figure 5 below.



               Survival proportion (%)







                                              0-19     20-29     30-39       40-49     50-59        60-69   70-79    80+
                                                                         Age at diagnosis (years)

                                                     whole cancer population              male              female

Figure 5: Increase rate of relative survival over a 16 year period (1982-1997) (figures
sourced from tables 3.8, 3.9, 3.10. Cancer survival in Australia, AIHW and AACR, 2001)


This section provided a comprehensive portrayal of the population of interest for the

projected study. It was seen that defining the term and age for 'Young Adults', in the

context of cancer is non-uniform. The demographic and social constructs of YA in

Australia suggest that this age group comprises distinctive developmental characteristics

and life events. The brief snapshot of cancer and the YA showed that this age group are

unique in that they experience great disparities to that of the whole population in terms

of cancer types; diagnosis, treatment and survival outcomes. Collectively this section

illustrates the YA age group as an 'at risk' population as their survival rates and

treatment outcomes under perform that of the whole cancer population.

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Nicole Shipard                                 June 2008
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