See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/330664585

Hope, burden or risk: a discourse analytic study of the construction and

experience of fertility preservation in the context of cancer

Article in Psychology and Health · January 2019

DOI: 10.1080/08870446.2018.1543764

CITATIONS READS

12 251

3 authors:

Chloe Parton Jane Ussher

Te Herenga Waka - Victoria University of Wellington Western Sydney University
31 PUBLICATIONS 214 CITATIONS 319 PUBLICATIONS 8,118 CITATIONS

SEE PROFILE SEE PROFILE

Janette Perz
Western Sydney University
169 PUBLICATIONS 4,102 CITATIONS

SEE PROFILE

Some of the authors of this publication are also working on these related projects:

Evaluation of the relative efficacy and mechanisms of a couple based intervention for Premenstrual Syndrome through a randomised control trial using mixed
methods. View project

Prostate cancer in gay and bisexual men View project

All content following this page was uploaded by Jane Ussher on 02 February 2019.

The user has requested enhancement of the downloaded file.

 Psychology & Health

ISSN: 0887-0446 (Print) 1476-8321 (Online) Journal homepage: https://www.tandfonline.com/loi/gpsh20

Hope, burden or risk: a discourse analytic study

of the construction and experience of fertility
preservation in the context of cancer

Chloe Parton, Jane M. Ussher & Janette Perz

To cite this article: Chloe Parton, Jane M. Ussher & Janette Perz (2019): Hope, burden or risk: a
discourse analytic study of the construction and experience of fertility preservation in the context of
cancer, Psychology & Health, DOI: 10.1080/08870446.2018.1543764

To link to this article: https://doi.org/10.1080/08870446.2018.1543764

Published online: 26 Jan 2019.

Submit your article to this journal

View Crossmark data

Full Terms & Conditions of access and use can be found at

https://www.tandfonline.com/action/journalInformation?journalCode=gpsh20
PSYCHOLOGY & HEALTH
https://doi.org/10.1080/08870446.2018.1543764

Hope, burden or risk: a discourse analytic study of the

construction and experience of fertility preservation
in the context of cancer
Chloe Parton, Jane M. Ussher and Janette Perz
Western Sydney University, Translational Health Research Institute, Campbelltown Campus,
Sydney, Australia

ABSTRACT ARTICLE HISTORY

Objective: Infertility is a significant concern for people with can- Received 26 March 2018
cer and fertility preservation is often recommended. However, Accepted 25 October 2018
uptake of preservation interventions remains low. In this study,
we examined how people with cancer construct their subjectivity KEYWORDS
– their sense of self – in relation to decision making and proc- Cancer; cancer survivorship;
infertility; fertility
esses of fertility preservation. preservation; gender;
Design: Six-hundred and ninety-three women and 185 men com- discourse analysis;
pleted a self-report survey; 61 women and 17 men participated in subjectivity; liminality
semi-structured interviews. Subject positions adopted in relation to
constructions of fertility preservation in transcripts and open-ended
survey responses were examined using thematic decomposition.
Results: Three main discursive themes were identified: ‘Limited
agency and choice, or resisting risk: not taking part in fertility
preservation’, ‘Fertility preservation as a means to retain hope and
control’, and ‘Fertility preservation as uncertain and distressing’.
Conclusion: It is important for health professionals to provide
accurate information, acknowledge the complexity of fertility pres-
ervation and implications for ‘liminal’ survivorship where exclu-
sion, uncertainty or unsuccessful interventions have occurred.

Introduction
Impaired fertility can be one of the most detrimental outcomes of cancer, impacting
people with cancer long after the conclusion of treatment (Benedict, Shuk, & Ford,
2016; Canada & Schover, 2012). Twenty-five to sixty percent of people with cancer
report experiencing temporary or permanently impaired fertility (Tschudin & Bitzer,
2009), which is associated with increased psychological distress, grief, stress, reduced
quality of life and detrimental changes to body image and gender identity (Carter
et al., 2005; Crawshaw & Sloper, 2010; Reis, Beji, & Cosken, 2010). Clinical cancer care
guidelines recommend that fertility issues are raised with all adolescent, young adult
and adult cancer patients of reproductive age and fertility preservation offered if
appropriate (Flink, Sheeder, & Kondapalli, 2017; Loren et al., 2013). Commonly available

CONTACT Chloe Parton c.parton@westernsydney.edu.au

Additional supporting information is available in the online.
ß 2018 Informa UK Limited, trading as Taylor & Francis Group
2 C. PARTON ET AL.

forms of fertility preservation include sperm cryopreservation for men (Shnorhavorian

et al., 2015), and embryo or oocyte cryopreservation for women (Deshpande, Braun, &
Meyer, 2015). Women’s options for fertility preservation are generally considered more
complex and invasive than men’s, with greater uncertainty of success (Shnorhavorian
et al., 2015). Rates of referral for fertility preservation remain relatively low, averaging
20–30% (Cohen et al., 2016; Scanlon et al., 2012), with women reporting lower uptake
rates of fertility preservation (14.9%) compared to men (31.5%) in a recent study
(Wang, Chen, Ruan, & Cheung, 2016). These low rates are a matter of concern, as clini-
cians have a ‘duty of care to provide the option of fertility preservation’ to patients of
reproductive age (Logan, Perz, Ussher, Peate, & Anazodo, 2018b), and uptake of fertil-
ity preservation can improve quality of life and wellbeing post-treatment (Letourneau
et al., 2012; Sobota & Ozakinci, 2014).
Existing research examining fertility preservation after cancer has focused on
Western countries, with most studies conducted in the United Kingdom, United States
of America, Canada and Australia. Studies have examined the distribution and quality
of information by health professionals, utilisation of fertility services, as well as patient
satisfaction and psychological distress as outcomes of fertility-related care (Deshpande
et al., 2015; Letourneau et al., 2012; Ussher, Cummings, Dryden, & Perz, 2016;
Yeomanson, Morgan, & Pacey, 2013). Much of this research has focused on nulliparous
women (without a biological child) with early stage reproductive cancers (Komatsu
et al., 2014; Peate et al., 2012) and on adolescent and young adults (AYA) (Barlevy,
Wangmo, Elger, & Ravitsky, 2016; Quinn et al., 2011). However, fertility-related distress
and desire for information about fertility preservation is reported by both parous (with
a biological child) and nulliparous men and women, across cancer types, stages and
age groups (Deshpande et al., 2015; Ussher & Perz, 2018). Further, psychological
adjustment to infertility can differ across time (Moura-Ramos, Gameiro, Canavarro, &
Soares, 2012), suggesting a need to examine longer term perspectives on fertility pres-
ervation, in addition to immediate responses. Finally, experiences of fertility and can-
cer are socially constructed and shaped by cultural understandings of gender, fertility
and parenthood (Gardino, Rodriguez, & Campo-Engelstein, 2011), as well as what it
means to be someone who is living with cancer (Kaiser, 2008). However, there is a
lack of evidence examining how people with cancer make meaning of experiences
associated with fertility preservation, while taking into account the social construction
of such experiences (Crawshaw, 2013). This includes how people with cancer construct
their subjectivity – one’s sense of self – in relation to decision making and the process
of fertility preservation interventions. This is the aim of the present study.
A lack of information about the consequences of cancer treatment on fertility from
health professionals has been identified a major barrier to accessing fertility preserva-
tion (Logan, Perz, Ussher, Peate, & Anazodo, 2018a). Many people with cancer report
receiving no information, or inadequate information from healthcare professionals
about fertility (Benedict, Thom, et al., 2016; Ussher & Perz, 2018). Furthermore, fertility
information from healthcare professionals is not uniformly distributed across gender,
age group and cancer type (Shnorhavorian et al., 2015). Men, those who are nullipar-
ous, heterosexual, with reproductive cancers, and who are AYA at the time of diagno-
sis, are the groups most likely to receive information from healthcare professionals
 PSYCHOLOGY & HEALTH 3

and take part in fertility preservation (Barlevy et al., 2016; Logan et al., 2018a; Wang
et al., 2016). While previous studies have focused on health professional information
and referral for specialist fertility care, other factors may influence uptake of fertility
preservation (Flink et al., 2017). For example, the desire to have a biological child and
being in a stable relationship at the time of cancer can motivate people with cancer
to take part in fertility preservation (Baysal et al., 2015; Treves et al., 2014). Conversely,
limited clinic times, urgency to act on fertility during cancer treatment, the wish to
preserve survival for an existing child, and for women, the physical burden of fertility
preservation, can act as barriers to uptake (Baysal et al., 2015; Flink et al., 2017; Lee
et al., 2011). In addition, a lack of private health insurance or public healthcare funding
for fertility preservation is associated with lower rates of uptake, due to financial bar-
riers to accessing services (Inhorn et al., 2018; Shnorhavorian et al., 2015). While there
is some access to public funding in Australia where this study was based (Anazodo
et al., 2016), this differs across the country and individual fertility clinics.
Studies suggest that uptake of fertility preservation can have a positive impact on
psychological wellbeing for both women and men during treatment, by aiding coping,
as well as maintaining hope for a biological child and survival (Deshpande et al., 2015;
Saito, Suzuki, Iwasaki, Yumura, & Kubota, 2005; Treves et al., 2014). However, the
experience of fertility preservation may not be entirely positive. Interventions for pres-
ervation of biological material can be accompanied by feelings of anxiety (Razzano
et al., 2014). Men have reported feeling rushed and unprepared, with emotional diffi-
culty and feelings of embarrassment associated with discussions of sperm storage
(Chapple, Salinas, Ziebland, McPherson, & Macfarlane, 2007). Further, both women and
men have reported an ongoing lack of certainty regarding fertility outcomes despite
having preserved biological material (Logan et al., 2018b; Saito et al., 2005). Taken
together, these findings suggest that both uptake and not taking part in fertility pres-
ervation may be a complex and multifaceted experience for people with cancer, incor-
porating systemic and personal factors. There is a need to examine how people with
cancer construct and experience both uptake and not taking part in fertility preserva-
tion, including agency in the process of decision making.

The social construction of cancer and fertility

Fertility preservation and cancer are experienced within a socio-cultural context
(Crawshaw, 2013), which shapes the meanings available to make sense of being a per-
son with cancer who has fertility risk or loss (Ussher & Perz, 2018). Furthermore, shared
cultural meanings – also known as ‘discourses’ – are organised within socio-cultural
contexts, with some discourses occupying a privilege or ‘taken-for-granted’ positioning
over others (Foucault, 1980). Acknowledging socio-cultural context and the role of cul-
tural discourse, is important for understanding how people with cancer navigate the
social processes which influence their subjectivity, decision making and behaviours
with regard to fertility preservation (Barlevy et al., 2016).
Fertility and parenthood are considered ‘natural’ and ‘normal’ aspects of heterosex-
ual gendered subjectivity and life course within cultural discourse (Throsby, 2002;
Throsby & Gill, 2004). Fertility is symbolic of ‘virility’ and the sexual functioning of
4 C. PARTON ET AL.

men’s bodies (Gardino et al., 2011). The loss of fertility can represent a loss of control
to men (Hjelmstedt et al., 1999), presenting a threat to normative masculine subjectiv-
ity. Motherhood is also considered a cultural expectation for women (Arendell, 2000),
with those who are not mothers considered to be ‘lacking’ within dominant cultural
discourse (Loftus & Andriot, 2012). Fertility loss in the context of cancer has been
described as a ‘double trauma’ (Carter et al., 2010), presenting a threat to normative
life course and gendered subjectivity (Perz, Ussher, & Gilbert, 2014; Rees, 2017).
Having a child after cancer can signify a return to normality for people with cancer
(Connell, Patterson, & Newman, 2006; Crawshaw & Sloper, 2010). This suggests that
the opportunity to have a child through fertility preservation may represent the possi-
bility of being a ‘good’ cancer survivor who is able to ‘overcome’ cancer, as well as
the restoration of gendered subjectivity. However, many people with cancer may
experience ongoing ‘liminal’ risk to their gendered subjectivity, and significantly
altered life course due to unresolved fertility concerns (Rees, 2017). Few studies have
yet addressed how people make sense of their subjectivity while negotiating fertility
preservation, while taking into account cultural discourses of cancer, fertility and gen-
der (Crawshaw, 2013; Crawshaw & Sloper, 2010).
This study examined how women and men, across reproductive and non-reproduct-
ive cancers, a range of cancer stages, age groups and relationship contexts, construct
and experience fertility preservation. To address the research aim, the following
research questions were adopted: How do people with cancer construct and experi-
ence fertility preservation? How do people with cancer account for uptake and not tak-
ing part in fertility preservation? A critical realist epistemology was adopted (Bhaskar &
Lawson, 1998). This perspective acknowledges the materiality of the embodied impact
of cancer on fertility, medical preservation of biological material and intrapsychic dis-
tress. These experiences are conceptualised as being mediated by culture, language
and power (Gilbert et al., 2013; Williams, 2003), including cultural constructions of gen-
der, fertility and cancer (Crawshaw & Sloper, 2010; Ussher & Perz, 2018).

Method
Design
This study utilised a qualitative design. A survey was completed by 693 Australian
women and 185 men, across a range of cancer tumour types and age groups, and in-
depth one-to-one interviews conducted with a purposively selected subsample of sur-
vey respondents, 61 women and 17 men. Thematic decomposition (Stenner, 1993)
was used to examine how participants constructed their experiences and subjectivities
in relation to fertility preservation in the context of cancer, within open-ended survey
responses and interview transcripts.

Participants and procedure

This study was part of a mixed-method project based in Australia, which examined
the construction and experience of fertility after a cancer diagnosis (Ussher & Perz,
2018). Participants responded to advertisements inviting people with cancer and their
 PSYCHOLOGY & HEALTH 5

partners to partake in a study regarding fertility after cancer. Advertisements were cir-
culated nationally through cancer support groups, social media, media stories in local
press, advertisements in cancer and carer-specific newsletters, hospital clinics and local
cancer organisation websites and telephone helplines. An online or postal survey was
completed by participants examining their experiences of fertility and infertility post-
cancer. At the end of the survey, participants indicated whether they would like to
take part in an interview, to discuss changes to fertility in more depth. Purposive sam-
pling was used to select interview participants that were representative of the age
groups and cancer types present in the survey sample, with the aim of gaining insight
into the experience women and men across this variability (Patton, 2002).
Eight hundred and seventy-eight people living with cancer (693 women, 185 men)
took part in the survey. The average age of survey participants was 42.53 years (SD
=14.21), and average time from diagnosis 6.22 years (SD =7.01) (see Table S1). Survey
participants reported a range of cancer types including breast (56.7%), gynaecological
(12.9%), hematologic (12.7%), gastrointestinal (4.8%), neurologic (3.2%), head and neck
(2.9%), skin (2.3%), musculoskeletal (2.3%), genitourinary (0.9%) and respiratory (0.7%).
Stage of disease at diagnosis ranged between early and advanced, with 67% reporting
that their cancer was diagnosed at an early stage. Seventy-one percent were currently
in a relationship, with nearly all participants reporting that they were heterosexual
(98%). Fifty-eight percent of survey respondents reported that they had children, 95%
were the biological parent and 85% had become a parent before cancer.
Across survey respondents, a greater proportion of men (64%, n ¼ 94) than women
(43%, n ¼ 280) reported that they had not discussed fertility with a health care profes-
sional since diagnosis of cancer. However, more men (28.8%, n ¼ 49) than women
(20.1%, n ¼ 130) reported they had taken part in a fertility investigation or preservation
procedure. Of those participants who responded to an open-ended survey question
regarding the nature of fertility intervention (see Table S2), the majority reported tak-
ing part in a fertility preservation intervention (81.6%, n ¼ 133) as opposed to an inves-
tigation (18.4%, n ¼ 30). Women reported taking part in fertility interventions involving
a partner (embryo freezing or In vitro fertilisation (IVF)) (48%, n ¼ 60) and individual
preservation procedures (egg freezing, ovarian tissue freezing and hormonal interven-
tions) (32.8%, n ¼ 41). The majority of men reported taking part in sperm banking
(78.9%, n ¼ 30). Seventy-eight participants aged between 18 and 58 (M ¼ 45.10), 61
women and 17 men, accepted the invitation to take part in an interview.

Materials
Survey
The qualitative analysis was based on survey responses to a series of open-ended
items and responses to an invitation to comment further on closed items associated
with fertility preservation: Describe your experience of these investigations and/or
undergoing fertility procedures both before and after cancer diagnosis (where appro-
priate)? Have you been successful in to becoming pregnant since the cancer diagnosis
(Please comment)? Do you currently have plans to attempt to become pregnant
(Please comment)? Have fertility issues been discussed with a health care professional?
6 C. PARTON ET AL.

If so, how satisfied were you with the discussion (Please tell us more about
your response)?

Interviews
Interviews were conducted one-to-one by telephone, taking approximately 1 h and
were digitally recorded and transcribed verbatim. Telephone interviews were used due
to the geographic diversity of the sample and to allow flexibility around the timing of
interviews to suit participants. While the use of telephones removes embodied com-
munication cues, the privacy afforded can enable greater comfort for speakers when
covering sensitive or taboo topics (Sturges & Hanrahan, 2004). The topics covered in
the interview included: feelings about fertility and parenthood, experiences of manag-
ing fertility issues, changes to personal identity and body image and experiences of
interacting with health professionals. Participant responses regarding fertility preserva-
tion were examined throughout the interview transcripts. The interviews were conver-
sational in style, with the wording and formatting of questions used flexibly to suit
the particular context of the participant (Kvale & Brinkmann, 2009). Participants were
given a gift voucher for $25 (AUD) as a modest acknowledgment of their time and
any travel expenses that may have occurred. All the interviews were transcribed verba-
tim by professional transcribers, and integrity checked for accuracy by a member of
the research team.

Analysis
We employed thematic decomposition (Stenner, 1993) to analyse the interview tran-
scripts and qualitative survey responses. Thematic decomposition is a form of theoret-
ical thematic analysis which identify how participants construct their subjectivity
through the adoption of subject positions within cultural discourse (see Gilbert et al.,
2013; Parton, Ussher, & Perz, 2016; Stenner, 1993). Patterns of subject positions
adopted by participants are identified across the data set and organised into ‘coherent
themes or stories’ (Stenner, 1993, p. 114). A poststructuralist approach is adopted in
which ‘discourse’ refers to organised cultural meanings contained within language
(Foucault, 1980), which are constitutive of meaning making (Gavey, 1989). As part of
this approach, subjectivity is not conceptualised as stable or categorical, but complex,
dynamic and situated within cultural context (Davies & Harre, 1990). Furthermore, the
adoption of discursive subject positions is potentially facilitated and limited by mater-
ial and intrapsychic conditions, such as the existential threat of cancer, health profes-
sional practice and intrapsychic distress (Gilbert et al., 2013; Ussher, 2000). By
employing this methodology, we examined the subject positions made available and
adopted by participants through particular constructions of fertility preservation and
cancer, including both accounts of uptake and not taking part. This includes both how
participants construct their own subjectivity in relation to fertility preservation decision
making, as well as their accounts of how others position them within cultural dis-
course (Davies & Harre, 1990).
 PSYCHOLOGY & HEALTH 7

To conduct the analysis, open-ended survey responses and transcripts from semi-
structured interviews were initially analysed inductively. The data was first read and
re-read by the research team to establish familiarity, then coding was carried out to
identify key features of the data that were relevant to the overall aims of the project.
Initial codes were then collated and grouped to form a coding framework to organise
and meaningfully describe the content of the data. A line-by-line coding of the full
qualitative survey and interview data set was conducted using the coding framework
to collate all instances of the codes. As this study examined participant accounts of
fertility preservation, examples of ‘first-order’ codes examined in the analysis include,
‘Concerns about reproduction’, ‘Barriers to fertility preservation’, ‘Risks of fertility pres-
ervation’, ‘Decision making regarding fertility preservation’ and ‘Experiences of fertility
preservation’. Higher order themes were identified by examining discursive construc-
tions of fertility preservation and cancer across the coded data set. As part of this
step, the function of discursive constructions of fertility preservation were examined,
including the implications for positioning of subjectivity and agency. No differences
were observed in the discursive constructions employed by participants in the inter-
views or open-ended survey responses. As such, extracts from both data sources are
presented together in the results. In the presentation of data extracts, pseudonyms
are allocated to interview participants and gender indicated for survey responses, with
age and cancer type indicated, to provide context to longer qualitative partici-
pant accounts.

Results
Three main themes were identified in the discursive analysis of subject positions
adopted by participants in the open-ended survey responses and interviews. The first
theme was ‘Limited agency and choice, or resisting risk: not taking part in fertility
preservation’, comprised of two subthemes, ‘Fertility preservation as ‘out of reach’’ and
‘Resistance of risk to subjectivity through refusing fertility preservation’. The second main
theme was ‘Fertility preservation as a means to retain hope and control’ and the third
theme ‘Fertility preservation as uncertain and distressing’. As part of the dynamic pro-
cess of subjectivity, participants adopted multiple subject positions across their
accounts, which were at times conflicting (Davies & Harre, 1990). However, the adop-
tion of subject positions was also shaped by material, discursive and intrapsychic con-
ditions (Gilbert et al., 2013; Ussher, 2000), as described in the findings below.

Limited agency and choice or resisting risk: not taking part in fertility
preservation
‘I did not have a choice at the time’: fertility preservation as ‘out of reach’
Many participants who had not taken part in fertility preservation investigations or
procedures positioned themselves as having limited agency due to factors that were
outside of their control. As such, many participants adopted subject positions in rela-
tion to fertility decision making in which they had limited or no choice. At the same
time, participants gave accounts of dissatisfaction and regret with the lack of
8 C. PARTON ET AL.

consideration of their fertility by healthcare professionals and barriers to fertility serv-

ices. These accounts functioned to resist the privileging of survival over fertility by
healthcare professionals and ‘unfair’ barriers to fertility preservation.
Both women and men reported that their fertility was ‘taken out of my hands’ by med-
ical professionals who made treatment decisions focussed on survival or extending life on
their behalf. For example, the following comments were made: ‘No one actually advised
what the chemo meant in regards to fertility’ (man, 48 years, bowel) and ‘I think they were
more looking at extending the time period [of life] than thoughts of afterwards’ (Olivia, 21
years, hematologic). Some participants reported being unsure as to why they did not
receive fertility information from health care professionals prior to treatment, or whether
they might have been able take part in fertility preservation if it had been offered. For
example, one woman (Georgia, 43 years, breast) made the following comment:
I guess if I had been told that I could freeze some eggs and I had gone ahead and frozen
some eggs and then I had been told I could have done IVF and we’d gone ahead and
done IVF, at least I would have done everything I could have done.

Subsequently, a number of participants positioned themselves as lacking choice or

control over their longer term fertility outcomes due to health professional practice,
with Christian (37 years, testicular) saying,
Yeah just, as I said, it was more just about, um, this is – this is the cure, this is what we
are going to do to, you know, to cure this and there was no sort of we think you should
go away and you know store some [sperm]. It was about let’s get you in and get you
started, so.

In these accounts, participants adopted subject positions in which they had ‘no
choice’ in relation to health professional decision making, which prevented them from
taking action to preserve their own fertility.
For some individuals, fertility preservation was positioned as out of reach because
of the financial cost, in the context of the financial burden of cancer, due to not being
able to work and the cost of medical treatment, as well as the anticipated future cost
of IVF using stored biological material. For example, one woman said this was the
‘biggest thing’ (Emily, 31 years, breast), or was a ‘long process, expensive’ (woman, 25
years, breast). The additional cost of fertility preservation was described by many par-
ticipants as ‘too much’, with some participants reporting having to borrow money
from family members, sell their home or renege on mortgage payments. Some partici-
pants were critical that the storing of biological material was not covered by public
healthcare in the State they live in, arguing that it should be, as ‘it relates to cancer
treatments’ (man, 24 years, Ewings Sarcoma). Another woman commented on the add-
itional cost of IVF after cancer, saying,
It got so expensive. Even IVF was really, really expensive. And I thought, this isn’t my fault
that I’ve had this. And even though I got a series of discounts, like they don’t charge me
for storage of eggs because of my cancer diagnosis, at the same time, I think, you know,
it’s cancer. It’s not really something that I’ve chosen to have, which is really unfair.
(Abigail, 35 years, breast)

Participants adopted subject positions in which they lacked control over their can-
cer diagnosis with fertility preservation procedures constructed as an inevitable part of
 PSYCHOLOGY & HEALTH 9

cancer treatment, rather than separate. The significant personal financial cost in cir-
cumstances of illness that were not of their choosing, was constructed as an unfair
barrier to the uptake of fertility preservation procedures.
The process of having to make decisions about fertility preservation in the midst of
cancer treatment was also positioned as a barrier, primarily by women who required
additional time and greater physical burden in fertility preservation procedures com-
pared to men. This decision making often occurred in ‘crisis mode’ immediately follow-
ing diagnosis and prior to treatment, a time that was physically and emotionally
challenging. One woman (35 years, breast) commented on her experience saying,
‘Before treatment we went to see a fertility specialist - it was overwhelming because I
was still dealing with dealing with [the] diagnosis and couldn’t think properly espe-
cially to make [a] decision that would further delay treatment’. Other participants sug-
gested that making decisions about fertility in this context added to the emotional
burden of their cancer experience. For example, Nicola (41 years, breast) said,
One thing that I found really hard is that you’re dealing with your diagnosis of cancer
and then on top of that you’re being thrown in, “You’ve got to make a decision about
your fertility, do you want to preserve your eggs or not?” And that was really difficult …
which is why I ended up saying, “You know what? No.”

In these accounts, participants position themselves as having reduced capacity for

decision making and uptake of fertility preservation, due to the emotional and phys-
ical burden of cancer.
Unalterable demographic factors were also associated with the adoption of a
‘limited agency’ subject position in relation to fertility preservation. For many women,
their current relational context was positioned as a factor in not taking part in fertility
preservation, particularly in the context of having the ability to freeze embryos. For
example, Nicola (41 years, breast) commented on her doctor’s advice regarding the
increased success rate for freezing embryos, saying,
The other factor was the statistics given about, you know, the difference between a
frozen egg to a frozen embryo and the success rate between that … then I just kind of
thought, and I don’t have a partner. So, you know, if I want to freeze an embryo instead
then what do I do, do I go to a sperm bank, do I just go and pick up a guy from the bar?

Other women commented that the absence of a partner was the reason they were
not offered fertility preservation by health care professionals: ‘Maybe if I had been
married, that they would have been - like, that is the other thing that bothered me.
They used to say to me I wasn’t married’ (Laurel, 43 years, breast). Women’s accounts
of having limited agency in decision making regarding fertility preservation were
shaped by their relational context at the time of cancer.
For women who were of older reproductive age at the time of cancer, ‘age was a
factor’ in considering attempting to have a biological child through fertility preserva-
tion. Conversely, older reproductive age meant that having a biological child was ‘no
longer an issue’ for some participants. However, a number of women who were aged
in their late-thirties to early-forties at diagnosis were open to having a biological child
and described considerable challenge accessing fertility preservation. For example,
some women described not receiving fertility preservation information from health
care professionals or not being considered for preservation procedures as they were
10 C. PARTON ET AL.

‘in a smaller success range’. One woman, who was diagnosed at 46 years of age and
had still had hope for a biological child, said the following:
I guess the hard thing was, because the cut-off for me with a lot of these fertility clinics
was 42, 44, that was where I kept coming into a brick wall … because there seems to be
a real mindset, no, you’re not in the success rate, we’re not interested sort of thing, rather
than looking at it from the point of view of your actual circumstances. (Rosemary, 49
years, breast)

A number of women gave accounts of distress associated with the implications of a

cancer diagnosis given their reproductive age, while experiencing ongoing desire for a
child and difficulty coming to terms with the possibility of not having children. For
example, ‘Whilst I would love another child, I am now too old to attempt another
pregnancy’ (40 years, breast) and ‘So I’m basically, gradually, very, very slowly closing
the door on it’ (Miranda, 38 years, gynaecologic). These accounts suggest that women
who are at an older reproductive age at the time of their cancer may require particu-
lar support in exploring fertility options and coming to terms with the outcomes for
their fertility following cancer, combined with normal age related fertility decline.
At the same time, many men and women participants who were children or adoles-
cents at the time of diagnosis positioned themselves as lacking agency due to their
age, or being subject to the decision making of others, where survival was privileged
over fertility. As one young woman (24 years, neurological) said, ‘Well my parents
made me have (cancer) treatment as I was 17 and doctors didn’t tell me anything
about storing eggs or anything really’. Others said: ‘I was only 12 at the time’ (man, 20
years, Leukaemia) and ‘I didn’t know anything back then I was only 6’ (woman, 17
years, Ewings Sarcoma). The absence of consideration of fertility preservation by
parents and health professionals was accompanied by accounts of ‘regret’ from AYA
participants, with one woman saying, ‘I was 21 and scared and didn’t care but now I
wish I’d done more’ (22 years, Hodgkin’s Lymphoma). Similarly, another young woman
(17 years, Ewings Sarcoma) commented on the treatment she received as a young
child, saying, ‘I would’ve never accepted any chemotherapy treatments or radiother-
apy. They just make things worse’. Many participants who were a child or adolescent
at the time of their cancer adopted subject positions in which they lacked control
over decision making regarding their fertility, which was accompanied by accounts of
longer term dissatisfaction and regret.

‘Fertility isn’t top of my priorities’: resistance of risk to subjectivity through

refusing fertility preservation
In contrast, many women participants who had not taken part in fertility preservation
adopted a subject position of ‘resisting risk’ to their subjectivities. In these accounts,
the process of fertility preservation was constructed as ‘risky’, reflecting fears that
delaying or adjusting cancer treatments could threaten survival, particularly when
prognosis was poor. For example, one woman (Bridget, 28 years, respiratory) said, ‘I
didn’t feel I had the time to wait and I didn’t see that that was my biggest priority at
that time’. Another said ‘We did whatever it took to make the cancer go away’
(woman, 37 years, breast). However, some participants described experiencing an
 PSYCHOLOGY & HEALTH 11

ongoing tension between ensuring their own survival through cancer treatment and
their desire for a biological child, with one women (35 years, breast) saying, ‘It’s a
hard thing to juggle’. For participants who already had a child, ensuring survival was
positioned as important for the sake of existing children: ‘I want to live for the child I
have’ (woman, 46 years, breast). Other participants constructed their decisions in terms
of ‘priorit[ising]’ their ‘overall health’, with some women saying they were ‘still trying
to deal with the cancer diagnosis and treatments’ and did not wish to put their recov-
ery at risk in any way.
The emotional and health burden of fertility preservation, as well as uncertainty sur-
rounding the success rate, were also positioned as reasons to resist taking part in
preservation. Cancer diagnosis and treatment was described as having exacted a sub-
stantial emotional and physical toll, with some participants reporting that they did not
wish to add to this. As Julia (29 years, hematologic), said,
I’m not particularly prepared to, um, do certain - like IVF and all of that sort of thing,
where you have to do - go through so much, like the stress and pain and agony for
potentially, um, no success. I’ve said that I’m not prepared to do that because my body
just - I can’t do it.

In addition, another woman (37 years, breast) commented: ‘Decided I couldn’t han-
dle having fertility treatments just after surgery - it was all just too much. Decided I
would leave it up to fate’. Some men participants reported concerns about the phys-
ical and emotional burden of future fertility intervention on their women partners due
to the additional burden of IVF procedures for women. For example, one man (29
years, testicular) commented, ‘the process of getting my wife pregnant scares her’.
Participants adopted subject positions in which refusing fertility preservation was thus
positioned as an agentic choice, which functioned to enable control over health and
wellbeing, including that of women partners, after diagnosis and treatment for cancer.
However, these accounts of decision making were also complex and limited by the
risks presented by fertility preservation and cancer. As such, participants reported
wishing to protect survival, avoid further physical and harm and relinquish personal
control to ‘fate’.

‘I still cling to hope’: fertility preservation as a means to retain hope

and control
Some participants who had taken part in fertility preservation adopted agentic subject
positions, constructing such interventions as a means to retain a sense of choice or
control over fertility, and for women, hope for motherhood post-cancer.
The preservation of biological material before cancer treatment was constructed as
providing ‘back up’ or ‘insurance’, which ‘did relieve a lot of worries’ by both women
and men. This functioned to allow participants to retain a sense of ‘choice’ about the
possibility of having a biological child in the future, regardless of their fertility status
following treatment. As one man (22 years, leukaemia) reported, preserving sperm was
‘necessary to ensure that if I want children in the future I can have them’. Polly (33
years, breast) referred to her stored embryos, saying, ‘it’s nice to know that you’ve got
a bit of a security blanket’. Protecting the choice to have a biological child after cancer
12 C. PARTON ET AL.

through fertility preservation was also constructed as alleviating infertility-related dis-

tress, thus allowing participants to feel more comfortable taking up cancer treatments.
As one man (23 years, Ewings Sarcoma) commented, ‘I felt that I had to give myself
the best chance of survival, and if that meant becoming infertile I was prepared to
face that. Being able to store semen also contributed to my decision making’.
Some women also positioned themselves as feeling that they had more ‘control’
over their bodies and lives in general by engaging in fertility preservation. As one
woman (39 years, breast) commented: ‘it let me feel like I was in control about some-
thing going on with my body’. Similarly, other women commented on their ability to
be ‘proactive’, an ‘active participant’ and do something about their fertility by taking
up preservation options. As Abigail (35 years, breast) said,
Probably also taking control of my fertility was, um – it was probably more of an option
than some of the other treatments, because they’d say to you, you know, “You either
have your breasts removed or you die, now you need to choose,” and you think, well,
that’s not a choice. Whereas fertility is - it’s a little bit more of a choice.

For some women, this meant opting for treatments that were less likely to damage
fertility, or in one woman’s case, refusing recommended treatment in order to protect
her fertility: ‘this is me and this is my body and I know me best. So, I think, that really
did give me a lot of strength to stand up for myself … I just felt that it wasn’t the right
thing’ (Madeline, 39 years, breast). In these accounts, women positioned themselves as
exercising agency by engaging in fertility preservation measures, in contrast to a sense
of loss of control following diagnosis of cancer.
Taking part in fertility preservation was also constructed as a way to maintain
‘hope’ throughout cancer treatment, primarily by women for whom it symbolised the
possibility of motherhood beyond cancer. For example, Kate (29 years, hematologic)
said, ‘I think that the main thing was that there was some sort of hope. It meant that,
yeah, there was a potential, you know, to have a family’. Another woman described
her trachelectomy as both ‘a blessing’ and ‘a positive step’ that ‘preserv[ed] my fertil-
ity’. Taking part in fertility preservation was also constructed as contributing positively
to psychological wellbeing, with one woman (39 years, breast) saying that fertility
preservation gave her ‘something positive to concentrate on other than the existence
of the invasion of the cancer’. Other women reported that regardless of the outcome,
engaging in fertility preservation meant they were able to say they ‘no regrets’ and
had done as much as they could to protect fertility for the future: ‘whatever happens
we have done everything possible at the moment’ (woman, 22 years, Hodgkin’s
Lymphoma). In these accounts, women were preserving the possibility of a maternal
subjectivity by engaging in fertility preservation interventions, or by resisting medical
treatments which could harm their fertility.

‘There are no guarantees’: fertility preservation as uncertain and

distressing
Fertility preservation was not an unequivocally positive experience. Many participants
constructed the process as a source of distress and gave accounts of ongoing uncer-
tainty regarding their fertility, which continued beyond preservation of biological
 PSYCHOLOGY & HEALTH 13

material into longer term survivorship. Such accounts were associated with the adop-
tion of subject positions in which participants described themselves as having ‘lacked
control’ over the burden of fertility preservation and fertility outcomes. In these
accounts, fertility preservation was described as ‘stressful’, as a ‘horrible experience’
(woman, 33 years, breast) and ‘quite confronting and intimidating’ (man, 37 years, tes-
ticular). Taking part in fertility preservation while in the midst of cancer treatment was
described as ‘very overwhelming’ and ‘a lot to take in’, following the ‘shock’ of learn-
ing that fertility was at risk as a result of cancer treatment.
More specifically, the process of taking hormone to facilitate egg retrieval was
described as ‘very difficult on my body’ (31 years, breast) by women. Attempting preg-
nancy following fertility preservation was no longer a ‘natural’ and ‘simple’ conse-
quence of sex for both women and men participants, but something that was ‘clinical’
and ‘a complex exercise’ (Miranda, 38 years). As Laurence (37 years, testicular) said,
‘That is a little bit strange though, thinking that there’s, there’s a chunk of your usable
DNA sitting in a freezer’. With this discursive shift, participants positioned their fertility
as vulnerable to medical failure - ‘I twice attempted ’egg harvesting’ … It was unsuc-
cessful’, (woman, 40 years, bowel), and clinical errors - ‘The ‘freezer’ [sic] had a short
malfunction’ (woman, 43 years, breast). This had implications, not only for participants
with cancer, but also their partners, with particular burden for women partners. For
example, a number of men described feeling concerned about the burden on their
women partners: ‘It’s the routine, the drugs that she has to take, um, it’s all this stuff
that she has to do that, if I didn’t get sick, she would never have had to worry about,
we can only assume’ (Harry, 40 years, Hodgkin’s lymphoma). In these accounts, partici-
pants positioned both themselves and their partners as subject to burden, with risk to
future fertility, due to ‘unnatural’ medical interventions.
A number of men reported experiencing distress associated with the act of provid-
ing sperm in a clinical environment for fertility preservation. Experiences of masturbat-
ing to produce sperm were described as ‘awkward’, ‘embarrassing’, ‘surreal’, ‘wasn’t
comfortable’ and ‘every guy’s worst nightmare’. Furthermore, producing sperm for
preservation at an emotionally and physically ‘difficult’ time was constructed as contri-
buting to patient distress, with one man commenting: ‘It was awful … I had to rush
through making semen deposits, having recently had a testicle removed’ (male, 31
years, testicular). Younger male participants described sperm banking as ‘confronting’,
because of the presence of their parents. As one young man (26 years, Hodgkin’s
lymphoma) described: ‘Extremely awkward. The porn in the room. My mother waiting
in the next room (I was 15 at the time). Not the sort of experience I talk about. Ever’.
Both women and men participants reported feeling ‘rushed’ and ‘[un]prepared’ to
preserve biological material, which was positioned as ‘so nerve racking and an abso-
lute roller coaster ride’ (woman, 35 years, breast) and ‘I have since been left trauma-
tised by the experience’ (woman, 19 years, Hodgkin’s lymphoma). Absence of support
and information from healthcare professionals was positioned as a factor in this dis-
tress due to the resulting lack of participant knowledge about the process of fertility
preservation. This was evidenced in the following accounts: ‘I wish I’d known a little
bit more about how everything worked’ (Heidi, 28 years, gynaecologic) and ‘I felt my
doctors didn’t give me enough information on the subject’ (man, 19 years, leukaemia).
14 C. PARTON ET AL.

Such accounts contrasted with constructions of ‘good’ healthcare in which health pro-
fessionals acknowledged the ‘important[ance]’ of fertility and provided information
and support regarding fertility throughout treatment. For example, ‘[it] was all so
worthwhile, I had helpful doctors that assisted me the whole way through’ (woman,
30 years, breast).
Despite engaging in fertility preservation, both women and men reported experi-
encing ongoing uncertainty about their fertility. In these accounts, participants
adopted subject positions associated with a loss of control over their longer term fer-
tility. Preservation of biological material came with ‘no guarantees’, as one woman
said, ‘I am concerned because I don’t know if I will be able to fall pregnant’ (18 years,
Ewings Sarcoma). Another woman commented on her ongoing uncertainty saying, ‘I’m
just wondering if it was actually worth it’ (22 years, Hodgkin’s lymphoma). This uncer-
tainty and anxiety continued during the phase when couples were attempting to
achieve pregnancy with preserved biological material. For example, many participants
reported failed attempts at IVF following cancer treatment, commenting on relatively
low rates of success that added to distress or uncertainty for both themselves and
their partners.
Every time they planted an egg in her and it didn’t take, we had to wait three or four
weeks minimum … it was tough, it was really upsetting I think for both of us, and really
upsetting for her each time that happened … . We were very, very nervous.

(Liam, 38 years, testicular)

As taking part in fertility preservation does not guarantee future fertility, this
ongoing uncertainty served to add to the ‘emotional journey’ and ‘intensity’ of their
cancer experience.

Discussion
This study examined how people with cancer construct and experience fertility preser-
vation. Qualitative accounts of not taking part were complex, with many participants
adopting multiple subject positions that were shaped by accounts of the material con-
text of cancer, including health professional practice, and the process of fertility pres-
ervation. Many participants adopted self-positioning in which they had limited agency
or choice over the fertility preservation decision making or process. Conversely, some
participants reported actively refusing fertility preservation to protect their lives and
wellbeing. Where participants did report engaging in fertility preservation, some gave
positive accounts of fertility preservation associated with constructions of hope and
control. However, for many participants, fertility preservation was constructed nega-
tively as source of distress and accompanied by ongoing uncertainty. These accounts
suggest that even in circumstances where people with cancer do take part in fertility
preservation, the process is potentially challenging and accompanied by emotional
distress, which may continue in the longer term.
Participant self-positioning as not having had the option to take part in fertility
preservation due to lack of information or referral, gender, age, relationship status or
financial factors, confirms recent reviews that identify multiple factors influencing
 PSYCHOLOGY & HEALTH 15

uptake of such procedures, and reflect evidence of inequities in access (Flink et al.,
2017; Jones et al., 2017; Logan et al., 2018a). Participants in this study, in particular
women, reported feeling excluded from fertility treatments due to personal circum-
stances, which had consequences for distress and difficulties coming to terms with fer-
tility outcomes after cancer. Equally, many participants positioned the process of
decision making about fertility preservation as emotionally difficult and uncertain
(Chapple et al., 2007; Razzano et al., 2014). Taking part in fertility preservation may not
necessarily resolve the trauma of infertility, with distress, lack of control and uncer-
tainty persisting despite taking part in preservation, as reported previously (Logan
et al., 2018b; Saito et al., 2005).
Throughout these accounts, subject positions of ‘lacking control’ were adopted in
relation to the physical and emotional burden of fertility preservation, and fertility
decision making and outcomes, in addition to the burden of cancer. These accounts
are consistent with constructions of ‘liminal’ cancer subjectivities, which are associated
with a loss of control, uncertainty and a restricted sense of empowerment (Little,
Jordens, Paul, Montgomery, & Philipson, 1998), providing insight into suggestions that
infertility presents a ‘double trauma’ in the context of cancer (Carter et al., 2010).
Culturally desirable subjectivities are embodied by people with cancer who ‘fight’ and
‘think positively’ (Willig, 2011), demonstrating agency by giving their bodies over to
medical treatment (Purkis & van Mossel, 2008), maintaining hope for subjectivity and
life course, and returning to, or exceeding normality post-treatment (Bell, 2012;
Crawshaw & Sloper, 2010). ‘Hope’ is constructed as an enactment of ‘will’, with positive
outcomes attributed to people with cancer who exercise control over negative emo-
tional states that are associated with detrimental outcomes (Lupton, 1994). However,
many studies have noted a discrepancy between cultural ideals of cancer survivorship
and the lived experience of many people with cancer, who often navigate complex
body changes, altered life course and subjectivity, beginning at diagnosis and continu-
ing long after the conclusion of treatment (Hubbard & Forbat, 2012; Rees, 2017;
Thompson, 2007). Described as an ongoing ‘liminal’ or ‘in-between’ process, such
experiences are associated with a loss of control, uncertainty, and a restricted sense of
empowerment in relation to the medical system, subjectivity and life course (Little
et al., 1998). The findings of the present study suggest that such liminality may also
be associated with the cancer-related infertility, and with the decision making process,
or outcomes, of fertility preservation.
Liminality associated with cancer-related infertility and fertility preservation may
also signal threat or loss to ‘normal’ and ‘natural’ gender subjectivity (Crawshaw &
Sloper, 2010; Ussher & Perz, 2018). As fertility is symbolic of ‘virility’ and the sexual
functioning of men’s bodies, taking part in fertility preservation can be viewed as
being at odds with ‘normative’ constructions of heterosexual masculinity that centred
on fertility and adequacy as a partner (Gardino et al., 2011; Hjelmstedt et al., 1999;
Throsby & Gill, 2004). This provides some explanation for the low rates of engagement
in fertility investigation and preservation found in the present study, and reports of
distress that accompanied the process of sperm collection, as reported previously
(Chapple et al., 2007). However, previous research has reported that men like being
offered the opportunity to sperm bank, even if they feel unwell or embarrassed, and
16 C. PARTON ET AL.

successful sperm banking improves longer term quality of life (Crawshaw, Glaser, Hale,
& Sloper, 2008).
In the present study, men reported greater engagement in fertility investigation or
preservation than women, as reported in previous research (Wang et al., 2016).
However, contrary to previous research (Flink et al., 2017), a greater proportion of
men reported not speaking to a health professional about fertility than women. This
may reflect the fact that women’s options for fertility preservation are more complex
and invasive than men’s, with greater uncertainty of success (Shnorhavorian et al.,
2015). The low rates of engagement in fertility preservation are of concern, as women
have been suggested to be more vulnerable to distress following fertility loss com-
pared to men, due to the cultural expectation that women become mothers
(Armuand, Wettergren, Rodriguez-Wallberg, & Lampic, 2015; Komatsu et al., 2014). In
the present study, many women attempted to preserve the possibility of a maternal
subjectivity by engaging in fertility preservation interventions or by resisting medical
treatments which could harm their fertility. Not being able to have a biological child
can represent the loss of being a ‘whole woman’, which is associated with a maternal
subjectivity (Arendell, 2000; Loftus & Andriot, 2012). In this vein, the lack of certainty
over the outcome of fertility interventions may serve to question the very stability of
feminine subjectivity (Armuand et al., 2015), serving as a biographical disruption,
where women position themselves as failures as ‘wives and mothers’ (Dryden, Ussher,
& Perz, 2014; Ussher & Perz, 2018) .
Participants adopted subject positions of ‘taking control’ both in accounts of refus-
ing fertility preservation to preserve survival and wellbeing, as well as positive
accounts of taking part in fertility intervention. Both accounts can be interpreted as
actions taken by participants to have greater agency over their lives beyond cancer,
and preserving or ‘repairing’ gendered subjectivity (Komatsu et al., 2014). This subject
position is consistent with a culturally desirable cancer survivorship, in which people
act to maintain hope and overcome cancer in their lives (Bell, 2012; Crawshaw &
Sloper, 2010). However, participant accounts differed in their constructions of agency
in relation to fertility preservation. Some participants positioned fertility preservation
as a threat to life and wellbeing, confirming previous research that identified a privi-
leging of survival over fertility by people with cancer (Hershberger, Sipsma, Finnegan,
& Hirshfeld-Cytron, 2016; Jones et al., 2017). In these accounts, participant decision
making was constructed as prioritising either survival or fertility, with participants pre-
ferring to focus on survival at the expense of fertility. Others positioned fertility preser-
vation as way to preserve life and wellbeing, which was symbolised by the possibility
of having a future biological child and restoration of gender subjectivity. These
accounts are comparable to studies that suggest parenthood is central to cancer sur-
vivorship for some people, particularly women (Hershberger et al., 2016), and that fer-
tility preservation can assist people with cancer to cope and maintain hope for
survival during treatment (Deshpande et al., 2015; Saito et al., 2005). In these accounts,
women and men participants constructed fertility preservation as a means to have
greater control over both their fertility and cancer by taking part in fertility preserva-
tion. The complexity of agency in fertility preservation decision making has been
acknowledged previously, with studies stressing the importance of allowing people
 PSYCHOLOGY & HEALTH 17

with cancer to make choices about their fertility for greater future wellbeing (Logan
et al., 2018a, 2018b). Reports from this study extend these findings by specifically illus-
trating the complex ways in which participants negotiate constructions of risk and
hope in decision making and experiences of fertility preservation (Little, 2004).
Health professionals were positioned by participants as crucial to this decision mak-
ing process (Logan et al., 2018b), and as playing a key role in exacerbating or alleviat-
ing the burden of distress potentially associated with cancer-related infertility and
fertility preservation (Ussher, Parton, & Perz, 2018). This reinforces the importance of
fertility issues being raised with all cancer patients of reproductive age, across cancer
type, stage and relationship context and fertility preservation offered if appropriate
(Flink et al., 2017; Loren et al., 2013). It also reinforces the importance of clinician sup-
ported decision aids to facilitate the process of taking part in fertility preservation
(Peate et al., 2011; Woodard et al., 2018), and the need for support services to address
infertility-related distress, if fertility preservation is not possible, or is not successful
(Logan et al., 2018b).
The strengths of this study include the use of a sample across a range of cancer
types, stages and ages to examine the complexity of the construction and experience
of both uptake and not taking part in fertility preservation. Limitations to this study
include a lack of detailed knowledge of the types of fertility preservation interventions
that participants engaged in. Future research could include more specific questions
focused on fertility preservation, detailing particular forms of preservation interven-
tions. For example, procedures incorporated into cancer treatment (e.g., surgery, hor-
monal treatments) or established versus experimental procedures. Future research
could also examine long term experiences and outcomes of fertility preservation,
given the long term distress and uncertainty reported by participants who stored bio-
logical material, as well as evidence suggesting adjustment to infertility can change
over time around participation in interventions (Verhaak, Smeenk, Nahuis, Kremer, &
Braat, 2007). This could include examining the incidence and subjective experience of
successful pregnancies amongst people with cancer through assisted reproduction
procedures, as well as those who may have been unsuccessful. Fewer men volun-
teered to take part in the survey and interview, which may reflect the cultural expecta-
tions placed on women to both become a mother (Arendell, 2000), take responsibility
for fertility decision making within heterosexual relationships (Wigginton, Harris,
Loxton, & Lucke, 2018). Despite this, many of the men who took part in this study
reported concerns at the lack of access to fertility preservation, as well as discomfort
and uncertainty with the process. Including greater numbers of men in future research
may help identify men’s experiences of fertility and fertility preservation in greater
complexity. Finally, the study did not ask participants about household income. Given
accounts of financial cost as a barrier to taking part in fertility preservation, and the
use of biological material in IVF, future research could address the relationship
between income levels, access to public and private funding and engagement in fertil-
ity preservation in an Australian context.
The findings from this study have implications for health policy and professional
practice. Participant accounts stress the importance of enabling people with cancer to
exercise agency in decision making regarding fertility preservation. This includes the
18 C. PARTON ET AL.

importance of providing accurate information about fertility interventions to AYA indi-

viduals and adults of reproductive age, regardless of cancer type, gender, sexual iden-
tity or relationship status (Flink et al., 2017; Logan et al., 2018a). It is also important
for clinicians to provide information about the process and potential burden of fertility
preservation, acknowledging the complexity and difficulty of decision making (Baysal
et al., 2015). Participant reports in this study indicated a wish for continuity in support-
ive care from health professionals throughout their cancer experience to include the
fertility preservation process, and later use of biological material in assisted reproduc-
tion. Further, the discrepancy and role of financial cost as a barrier to taking part in
fertility preservation suggests that there is a need for more consistent public funding
for people with cancer (Abdallah, Briggs, & Fitzgerald, 2017), to enable access to fertil-
ity preservation services. Finally, the cultural context of cancer and fertility, across gen-
der, needs to be considered in shaping the way people with cancer negotiate fertility
preservation experiences. This includes acknowledging the importance of fertility for
longer term survivorship, in addition to implications for individuals who are unable to
achieve culturally desirable forms of cancer survivorship and gender subjectivity,
through exclusion, uncertainty or unsuccessful fertility preservation experiences.

References
Abdallah, Y., Briggs, J., & Fitzgerald, C. T. (2017). Better referrals and funding are needed for pre-
serving fertility. BMJ (Online), 356, i6801.
Anazodo, A. C., Stern, C. J., McLachlan, R. I., Gerstl, B., Agresta, F., Cohn, R. J., … Sullivan, E. A.
(2016). A study protocol for the Australasian oncofertility registry: Monitoring referral patterns
and the uptake, quality, and complications of fertility preservation strategies in Australia and
New Zealand. Journal of Adolescent and Young Adult Oncology, 5(3), 215–225.
Arendell, T. (2000). Conceiving and investigating motherhood: The decade’s scholarship. Journal
of Marriage and the Family, 62(4), 1192–1207.
Armuand, G. M., Wettergren, L., Rodriguez-Wallberg, K. A., & Lampic, C. (2015). Women more vul-
nerable than men when facing risk for treatment-induced infertility: A qualitative study of
young adults newly diagnosed with cancer. Acta Oncologica, 54(2), 243–252.
Barlevy, D., Wangmo, T., Elger, B. S., & Ravitsky, V. (2016). Attitudes, beliefs, and trends regarding
adolescent oncofertility discussions: A systematic literature review. Journal of Adolescent and
Young Adult Oncology, 5(2), 119–134.
Baysal, O., Bastings, L., Beerendonk, C. C. M., Postma, S. A. E., Inthout, J., Verhaak, C. M., …
Nelen, W. L. D. M. (2015). Decision-making in female fertility preservation is balancing the
expected burden of fertility preservation treatment and the wish to conceive. Human
Reproduction, 30(7), 1625–1634.
Bell, K. (2012). Remaking the self: Trauma, teachable moments, and the biopolitics of cancer sur-
vivorship. Culture, Medicine, and Psychiatry, 36(4), 584–6000.
Benedict, C., Shuk, E., & Ford, J. S. (2016). Fertility issues in adolescent and young adult cancer
survivors. Journal of Adolescent and Young Adult Oncology, 5(1), 48–57.
Benedict, C., Thom, B., N. Friedman, D., Diotallevi, D., M. Pottenger, E., J. Raghunathan, N., &
Kelvin, J. F. (2016). Young adult female cancer survivors’ unmet information needs and repro-
ductive concerns contribute to decisional conflict regarding posttreatment fertility preserva-
tion. Cancer, 122(13), 2101–2109.
Bhaskar, R., & Lawson, T. (1998). Introduction: Basic Texts and Developments. In M. Archer, R.
Bhaskar, T. Lawson, & A. Norrie (Eds.), Critical Realism: Essential Readings. London, England:
Routledge.
 PSYCHOLOGY & HEALTH 19

Canada, A. L., & Schover, L. R. (2012). The psychosocial impact of interrupted childbearing in
long-term female cancer survivors. Psycho-Oncology, 21(2), 134–143.
Carter, J., Raviv, L., Applegarth, L., Ford, J., Josephs, L., Grill, E., … Barakat, R. (2010). A cross-sec-
tional study of the psychosexual impact of cancer-related infertility in women: Third-party
reproductive assistance. Research and Practice, 4(3), 236–246.
Carter, J., Rowland, K., Chi, D., Brown, C., Abu-Rustum, N., Castiel, M., & Barakat, R. (2005).
Gynecologic cancer treatment and the impact of cancer-related infertility. Gynecologic
Oncology, 97(1), 90–95.
Chapple, A., Salinas, M., Ziebland, S., McPherson, A., & Macfarlane, A. (2007). Fertility issues: The
perceptions and experiences of young men recently diagnosed and treated for cancer.
Journal of Adolescent Health, 40(1), 69–75.
Cohen, L., Hamer, J., Helwig, C., Fergus, K., Kiss, A., Mandel, R., … Warner, E. (2016). Formal
evaluation of PYNK: Breast Cancer Program for Young Women-the patient perspective.
Current Oncology, 23(2), E102–E108.
Connell, S., Patterson, C., & Newman, B. (2006). A qualitative analysis of reproductive issues
raised by young Australian women with breast cancer. Health Care for Women International,
27(1), 94–110.
Crawshaw, M., Glaser, A. W., Hale, J. P., & Sloper, P. (2008). Young males’ experiences of sperm
banking following a cancer diagnosis-a qualitative study. Human Fertility, 11(4), 238–245.
Crawshaw, M. A. (2013). Male coping with cancer-fertility issues: Putting the ‘social’ into biopsy-
chosocial approaches. Reproductive BioMedicine Online, 27(3), 261–270.
Crawshaw, M. A., & Sloper, P. (2010). ’Swimming against the tide’ - The influence of fertility mat-
ters on the transition to adulthood or survivorship following adolescent cancer. European
Journal of Cancer Care, 19(5), 610–620.
Davies, B., & Harre, R. (1990). Positioning: The discursive production of selves. Journal for the
Theory of Social Behaviour, 20(1), 43–63.
Deshpande, N. A., Braun, I. M., & Meyer, F. L. (2015). Impact of fertility preservation counseling
and treatment on psychological outcomes among women with cancer: A systematic review.
Cancer, 121(22), 3938–3947.
Dryden, A., Ussher, J. M., & Perz, J. (2014). Young women’s construction of their post-cancer fer-
tility. Psychology & Health, 29(11), 1341–1360.
Flink, D. M., Sheeder, J., & Kondapalli, L. A. (2017). A review of the oncology patient’s challenges
for utilizing fertility preservation services. Journal of Adolescent and Young Adult Oncology,
6(1), 31–44.
Foucault, M. (1980). Power/Knowledge: Selected Interviews and Other Writings, 1972–1977.
Brighton, England: Harvester Press.
Gardino, S., Rodriguez, S., & Campo-Engelstein, L. (2011). Infertility, cancer, and changing gender
norms. Research and Practice, 5(2), 152–157.
Gavey, N. (1989). Feminist poststructuralism and discourse analysis: Contributions to feminist
psychology. Psychology of Women Quarterly, 13(1), 459–475.
Gilbert, E., Ussher, J. M., Perz, J., Wong, W. K. T., Hobbs, K., & Mason, C. (2013). Men’s experiences
of sexuality after cancer: a material discursive intra-psychic approach. Culture, Health &
Sexuality, 15(8), 881–895.
Hershberger, P. E., Sipsma, H., Finnegan, L., & Hirshfeld-Cytron, J. (2016). Reasons why young
women accept or decline fertility preservation after cancer diagnosis. Journal of Obstetric,
Gynecologic, and Neonatal Nursing: JOGNN, 45(1), 123–134.
Hjelmstedt, A., Andersson, L., Skoog-Svanberg, A., Bergh, T., Boivin, J., & Collins, A. (1999).
Gender differences in psychological reactions to infertility among couples seeking IVF- and
ICSI-treatment. Acta Obstetricia et Gynecologica Scandinavica, 78(1), 42–49.
Hubbard, G., & Forbat, L. (2012). Cancer as biographical disruption: Constructions of living with
cancer. Supportive Care in Cancer, 20(9), 2033–2040.
Inhorn, M. C., Birenbaum-Carmeli, D., Westphal, L. M., Doyle, J., Gleicher, N., Meirow, D., …
Patrizio, P. (2018). Medical egg freezing: How cost and lack of insurance cover impact women
and their families. Reproductive Biomedicine & Society Online, 5, 82–92.
20 C. PARTON ET AL.

Jones, G., Hughes, J., Mahmoodi, N., Smith, E., Skull, J., & Ledger, W. (2017). What factors hinder
the decision-making process for women with cancer and contemplating fertility preservation
treatment? Human Reproduction Update, 23(4), 433–457.
Kaiser, K. (2008). The meaning of the survivor identity for women with breast cancer. Social
Science & Medicine, 67(1),79–87.
Komatsu, H., Yagasaki, K., Shoda, R., Chung, Y., Iwata, T., Sugiyama, J., & Fujii, T. (2014). Repair of
the threatened feminine identity: Experience of women with cervical cancer undergoing fertil-
ity preservation surgery. Cancer Nursing, 37(1), 75–82.
Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the Craft of Qualitative Research
Interviewing (2nd ed.). Los Angeles, CA: Sage
Lee, R. J., Wakefield, A., Foy, S., Howell, S. J., Wardley, A. M., & Armstrong, A. C. (2011).
Facilitating reproductive choices: The impact of health services on the experiences of young
women with breast cancer. Psycho-Oncology, 20(10), 1044–1052.
Letourneau, J. M., Ebbel, E. E., Katz, P. P., Katz, A., Ai, W. Z., Chien, A. J., … Rosen, M. P. (2012).
Pretreatment fertility counseling and fertility preservation improve quality of life in reproduct-
ive age women with cancer. Cancer, 118(6), 1710–1717.
Little, M. (2004). Chronic illness and the experience of surviving cancer. Internal Medicine Journal,
34(4), 201–202.
Little, M., Jordens, C. F. C., Paul, K., Montgomery, K., & Philipson, B. (1998). Liminality: A major
category of the experience of cancer illness. Social Science & Medicine, 47(10), 1485–1494.
Loftus, J., & Andriot, A. L. (2012). “That’s what makes a woman”: Infertility and coping with a
failed life course transition. Sociological Spectrum, 32(3), 226–243.
Logan, S., Perz, J., Ussher, J. M., Peate, M., & Anazodo, A. (2018a). Clinician provision of oncofer-
tility support in cancer patients of a reproductive age: A systematic review. Psycho-Oncology,
27(3), 748–756.
Logan, S., Perz, J., Ussher, J. M., Peate, M., & Anazodo, A. (2018b). A systematic review of patient
oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age.
Psycho-Oncology, 27(2), 401–409.
Loren, A. W., Mangu, P. B., Beck, L. N., Brennan, L., Magdalinski, A. J., Partridge, A. H., … Oktay,
K. (2013). Fertility preservation for patients with cancer: American Society of Clinical Oncology
clinical practice guideline update. Journal of Clinical Oncology, 31(19), 2500–2510.
Lupton, D. (1994). Medicine as culture: Illness, disease and the body in western societies. London,
UK: SAGE.
Moura-Ramos, M., Gameiro, S., Canavarro, M. C., & Soares, I. (2012). Assessing infertility stress:
Re-examining the factor structure of the Fertility Problem Inventory. Human Reproduction,
27(2), 496–505.
Parton, C. M., Ussher, J. M., & Perz, J. (2016). Women’s construction of embodiment and the
abject sexual body after cancer. Qualitative Health Research, 26(4), 490–503.
Patton, M. Q. (2002). Qualitative evaluation and research methods. Newbury Park, CA: Sage.
Peate, M., Meiser, B., Cheah, B. C., Saunders, C., Butow, P., Thewes, B., … Friedlander, M. (2012).
Making hard choices easier: A prospective, multicentre study to assess the efficacy of a fertil-
ity-related decision aid in young women with early-stage breast cancer. British Journal of
Cancer, 106(6), 1053–1061.
Peate, M., Meiser, B., Friedlander, M., Saunders, C., Martinello, R., Wakefield, C. E., & Hickey, M.
(2011). Development and pilot testing of a fertility decision aid for young women diagnosed
with early breast cancer. The Breast Journal, 17(1), 112–114.
Perz, J., Ussher, J., & Gilbert, E. (2014). Loss, uncertainty, or acceptance: Subjective experience of
changes to fertility after breast cancer. European Journal of Cancer Care, 23(4), 514–522.
Purkis, M. E., & van Mossel, C. (2008). Cancer as a contested illness: Seeking help amid treatment.
In P. Moss & K. Teghtsoonian (Eds.), Contesting illness: Processes and practices (pp. 142–157).
Toronto, Canada: University of Toronto Press.
Quinn, G. P., Murphy, D., Knapp, C., Stearsman, D. K., Bradley-Klug, K. L., Sawczyn, K., & Clayman,
M. L. (2011). Who decides? Decision making and fertility preservation in teens with cancer: A
review of the literature. Journal of Adolescent Health, 49(4), 337–346.
 PSYCHOLOGY & HEALTH 21

Razzano, A., Revelli, A., Delle Piane, L., Salvagno, F., Casano, S., Randaccio, S., & Benedetto, C.
(2014). Fertility preservation program before ovarotoxic oncostatic treatments: Role of the
psychological support in managing emotional aspects. Gynecological Endocrinology, 30(11),
822–824.
Rees, S. (2017). ’Am I really gonna go sixty years without getting cancer again?’ Uncertainty and
liminality in young women’s accounts of living with a history of breast cancer. Health, 21(3),
241–258.
Reis, N., Beji, N. K., & Cosken, A. (2010). Quality of life and sexual functioning in gynaecological
cancer patients: Results from quantitative and qualitative data. European Journal of Oncology
Nursing, 14(2), 137–146.
Saito, K., Suzuki, K., Iwasaki, A., Yumura, Y., & Kubota, Y. (2005). Sperm cryopreservation before
cancer chemotherapy helps in the emotional battle against cancer. Cancer, 104(3), 521–524.
Scanlon, M., Blaes, A., Geller, M., Majhail, N. S., Lindgren, B., & Haddad, T. (2012). Patient satisfac-
tion with physician discussions of treatment impact on fertility, menopause and sexual health
among pre-menopausal women with cancer. Journal of Cancer, 3, 217–225.
Shnorhavorian, M., Harlan, L. C., Smith, A. W., Keegan, T. H. M., Lynch, C. F., Prasad, P. K., …
Schwartz, S. M. (2015). Fertility preservation knowledge, counseling, and actions among ado-
lescent and young adult patients with cancer: A population-based study. Cancer, 121(19),
3499–3506.
Sobota, A., & Ozakinci, G. (2014). Fertility and parenthood issues in young female cancer
patients-a systematic review. Journal of Cancer Survivorship, 8(4), 707–721.
Stenner, P. (1993). Discoursing jealousy. In E. Burman & I. Parker (Eds.), Discourse analytic
research. London, England: Routledge.
Sturges, J. E., & Hanrahan, K. J. (2004). Comparing telephone and face-to-face qualitative inter-
viewing: A research note. Qualitative Research, 4(1), 107–118.
Thompson, K. (2007). Liminality as a descriptor for the cancer experience. Illness Crisis and Loss,
15(4), 333–351.
Throsby, K. (2002). Negotiating "normality" when IVF fails. Narrative Inquiry, 12(1), 43–65.
Throsby, K., & Gill, R. (2004). "It’s different for men": Masculinity and IVF. Men and Masculinities,
6(4), 330–348.
Treves, R., Grynberg, M., le Parco, S., Finet, A., Poulain, M., & Fanchin, R. (2014). Female fertility
preservation in cancer patients: an instrumental tool for the envisioning a postdisease life.
Future Oncology, 10(6), 969–974.
Tschudin, S., & Bitzer, J. (2009). Psychological aspects of fertility preservation in men and women
affected by cancer and other life-threatening diseases. Human Reproduction Update, 15(5),
587–597.
Ussher, J. M. (2000). Women’s madness: A material-discursive-intrapsychic approach. In D. Fee
(Ed.), Pathology and the Postmodern: Mental Illness as Discourse and Experience (pp. 207–231).
Thousand Oaks, CA: Sage.
Ussher, J. M., Cummings, J., Dryden, A., & Perz, J. (2016). Talking about fertility in the context of
cancer: Health care professional perspectives. European Journal of Cancer Care, 25(1), 99–111.
Ussher, J. M., Parton, C., & Perz, J. (2018). Need for information, honesty and respect: patient per-
spectives on health care professionals communication about cancer and fertility. Reproductive
health, 15(1), 2.
Ussher, J. M., & Perz, J. (2014). Discourse analysis. In P. Rohleder & A. Lyons (Eds.), Qualitative
research in clinical and health psychology (pp. 226–237). London, England: Palgrave MacMillan.
Ussher, J. M., & Perz, J. (2018). The threat of biographical disruption: The construction and
experience of infertility following cancer for women and men. BMC Cancer, 18(250), 1–17.
Verhaak, C. M., Smeenk, J. M. J., Nahuis, M. J., Kremer, J. A. M., & Braat, D. D. M. (2007). Long-
term psychological adjustment to IVF/ICSI treatment in women. Human Reproduction, 22(1),
305–308.
Wang, Y., Chen, L., Ruan, J. Y., & Cheung, W. Y. (2016). Discussions about reproductive and sex-
ual health among young adult survivors of cancer. Cancer Medicine, 5(6), 1037–1046.
 22 C. PARTON ET AL.

Wigginton, B., Harris, M. L., Loxton, D., & Lucke, J. (2018). Who takes responsibility for contracep-
tion, according to young Australian women? Sexual & Reproductive Healthcare, 15, 2–9.
Williams, S. J. (2003). Beyond meaning, discourse and the empirical world: Critical realist reflec-
tions on health. Social Theory & Health, 1(1), 42–71.
Willig, C. (2011). Cancer diagnosis as discursive capture: Phenomenological repercussions of
being positioned within dominant constructions of cancer. Social Science & Medicine, 73(6),
897–903.
Woodard, T. L., Hoffman, A. S., Covarrubias, L. A., Holman, D., Schover, L., Bradford, A., … Volk,
R. J. (2018). The pathways fertility preservation decision aid website for women with cancer:
development and field testing. Journal of Cancer Survivorship, 12(1), 101–114.
Yeomanson, D. J., Morgan, S., & Pacey, A. A. (2013). Discussing fertility preservation at the time
of cancer diagnosis: Dissatisfaction of young females. Pediatric Blood and Cancer, 60(12),
1996–2000.

View publication stats