Enfermería Clínica 31 (2021) S352---S355

www.elsevier.es/enfermeriaclinica

Fear of recurrence among gynaecological cancer

survivors: A qualitative study夽
Selly Kresna Dewi a,b , Yati Afiyanti a,∗ , Imami Nur Rachmawati a

a
Faculty of Nursing, Universitas Indonesia, Depok, West Java, Indonesia
b
School of Health Sciences, Suaka Insan, Banjarmasin, South Borneo, Indonesia

Received 15 September 2020; accepted 21 September 2020

KEYWORDS Abstract The purpose of this study is to explore the in-depth perception fear of recurrence
Fear of recurrence; among survived gynaecological cancer. This study was conducted on 10 participants in one of
Survivors; the referral hospitals in Jakarta for a period of four months using the qualitative descriptive
Gynaecological method. A purposive sampling method. The data were collected through in-depth interviews.
cancer This study revealed two themes. The first theme had two sub-themes, lack of family support
and the sources of information that may not necessarily be accurate and can trigger fear of
recurrence. Based on these factors, various responses to fear of recurrence were observed, i.e.
anxious thoughts, screening examinations, and after completion of cancer treatment therapies.
Survivors of gynaecological cancer exhibited various trigger factors for relapse fears as well as
various responses that affect their psychological conditions. It is expected that health services
will cover all phases of treatments.
© 2020 Elsevier España, S.L.U. All rights reserved.

Introduction Indonesian Ministry of Health reported that 4.3 out of 1000

The prevalence of cancer in Indonesia is relatively high.
Cancer is the 7th leading cause of death in Indonesia. The
prevalence of cancer 2019 in Indonesia, reported that is
1.4 per 1000 population or around 347,792 people.1 The
夽 Peer-review under responsibility of the scientific committee of
the 4th International Conference for Global Health (ICGH) in con-
junction with the 7th Asian International Conference in Humanized
Health Care (AIC-HHC). Full-text and the content of it is under
responsibility of authors of the article.
∗ Corresponding author.
E-mail address: yatikris@ui.ac.id (Y. Afiyanti).
Indonesians currently live with cancer. Over one million peo-
ple live with cancer.2
Cancer relapse or recurrence is a problem that haunts
cancer survivors and health workers. Nearly 70% of ovarian
cancer survivors experienced recurrence and had a survival
rate of less than 30% for five years.3---5 The fear of relapse
drives psychological problems commonly found among can-
cer survivors, including those in Indonesia.6 Previous studies
from different countries with various cultural and health
services revealed that fear of relapse was experienced by
nearly 50% of survivors.7---9
There have not been many studies that have explored in-
depth the patients’ feelings about recurrence in Indonesia.
These were only found in Europe and the United States of

https://doi.org/10.1016/j.enfcli.2020.12.039
1130-8621/© 2020 Elsevier España, S.L.U. All rights reserved.
 Enfermería Clínica 31 (2021) S352---S355
America where many studies have been conducted to reveal
the phenomena of fear of recurrence. This study presents
various stories on the fear of recurrence among cancer sur-
vivors in Indonesia.
Method
The research used a descriptive qualitative approach,
in which the perceptions on recurrence among sur-
vivors of gynaecological cancer were explored.
This study has received ethical approval no.
07/UN2.F12.D/HKP.02.04/2019 from the Faculty of Nurs-
ing of Universitas Indonesia and has obtained research
permission no. B/466/II/2019 from the hospital.
A descriptive qualitative design was used for this study.
The ten participants in this study were selected using a
purposive sampling method. The inclusion criteria were sur-
vivors of gynaecological cancer. The participants should
have completed the cancer therapy stage. Data collection
was done through in-depth interviews ranging from 45 to
70 min long per session. This study was conducted in the span
of four months in one of the referral hospitals in Jakarta.
The rigour of the study
The credibility of the data in this study was maintained by
collecting data directly from the participants. Data collec-
tion was performed through in-depth interviews, recorded
using a recording device, which was later transcribed. Next,
the researcher confirmed the results of the analyses to the
participants. After verbatim results and data analyses were
made, the researcher discussed with the supervisor to anal-
yse and get feedback on the verbatim transcripts made.
Then, follow-up interviews were performed to explore the
findings regarding the participants’ statements. The later
stage interview was done in 2---3 meetings. In analysing
the categories and themes, the researcher avoided mak-
ing assumptions in structuring the categories and themes
to remain as neutral as possible to the participants’ state-
ments.
Results
Characteristics of the participants
The ten participants’ the age of the participants ranged from
17 to 65 years. The participants’ educational background
varied. Five participants were married, 3 were widows, and
2 were unmarried. The participants’ medical diagnoses var-
ied: cervical cancer, endometrial cancer, and ovarian cancer.
The cancer stages varied from stages I---III. The types of ther-
apies obtained were surgery, chemotherapy, and radiation
with treatment time ranging from 2 months to 9 years after
the completion of the treatment phase.
Family is the reason why relapse becomes more severe.
Family is one of the biggest support systems. On the other
hand, for some participants the lack of family support made
the relapse more difficult to face. Below are excerpts from
the participants’ statements:
S353
‘‘. . . I live alone. No one takes care of me except from
myself. I am also just a poor labourer doing other people’s
laundry, . . . if . . . [pauses and sighs] I relapse [eyes welling
with tears], I will get treatment, here again, I will have
to pay the fee but (I) can’t work hard anymore . . .’’(P1)
‘‘. . . if (it) relapses, (I am) afraid to bother (my) parents
and others . . .’’(P3).
The fear of relapse can originate from various sources of
information. In this study, the participants received infor-
mation on relapse from watching television, browsing on the
Internet and social media, and from listening to fellow sur-
vivors talking about relapse. Below are excerpts from the
participants’ statements:
‘‘. . . today, the news is everywhere, not only on . . . tele-
vision, on social media. There is so much news that even
though it (the cancer) has been treated; it had been
operated on, but it comes back again . . .’’ (P3).
‘‘. . . they said so. When people talk about relapses. Yes, I
get it from gathering to chatting, chatting with the other
patients . . .’’(P5).
Responses to fears of relapse consist of four sub-themes.
First, participants express feelings of anxiety, surgery,
chemotherapy, and radiation. Second, fear of the disease
spreading to other organs. Third, when going for a screening
examination after treatment therapy. Fourth, fear of relapse
when having intimate relationship, watching TV, and going to
sleep produce unpleasant feelings. Here are some excerpts
from participants:
‘‘. . . just a little bit of anxiety. It’s because I have cervical
cancer, I am afraid it comes back again’’ (P1)
‘‘. . . for example, If I am going for a check-up, strange
thoughts appear. I am afraid of relapse. Because. . . if you
check up, the disease can go back or maybe not.’’(P3).
Discussion
The theme ‘‘trigger factors, which are family aspect and
source of information’’ was used to explain of participant
believed that the lack of family support worsened their
conditions upon relapse. This study was observed among
participants who were unmarried or whose husbands have
passed away, who live alone away from their children. They
believe relapsing without family presence and support will
burden their minds. This was also revealed by another study
in which unmarried participants exhibited a higher level of
fear of recurrence than those who were married.6
Similarly, Borstelmann also pointed out that women who
did not get support from their partners had a higher prob-
ability of exhibiting symptoms of anxiety than those who
did.10 Another study Kyriacou reported that the existence
of significant relatives strongly influenced the psychosocial
condition of the survivors.11 This is in line with the study con-
ducted by Wijayanti, Afiyanti, Rahmah, and Milanti,12 which
proposed that the existence of closest family members in
facing diagnoses, therapies, and relapses could significantly
affect women’s perception of their self-image. This study
also raises a different fact, namely that participants think
that it will be troublesome for the family if they relapse.
 S.K. Dewi, Y. Afiyanti and I.N. Rachmawati
Another trigger to recurrence identified by this study was
that participants revealed that they were afraid of relaps-
ing because of what they saw on television, social media and
the internet news on cancer survivors. In this case, it showed
that cancer survivors could easily access information on can-
cer. It gave rise to fears of recurrence. Television shows
referred to by the participants were shows that provided
information on celebrities who have cancer.
The results of another study according to Fors and Barch
demonstrated that television shows can affect a person’s
behaviour.13 According to the participants, trigger fear of
relapse. As such, it is wiser to limit such exposures so that
these factors can be avoided. Another triggering factor for
relapse fear comes from listening to other people talking
about the issue. Inan and Ustun stated that cancer sur-
vivors often compared their health status with that of others
and this affected their psychological health.14 It was also
revealed by participants that the relapse fear they expe-
rienced could arise from listening to their fellow cancer
survivors talking about cancer and its recurrence. Gathering
and talking with family members can also bring up fearful
thoughts caused by talking about their other family members
experiencing recurrence.
In the study by McCallum,7 cancer survivors needed
accurate information from health professionals about the
prognosis of their diseases and how their health was guaran-
teed after treatment therapies. The information provided
was bad, describing the worst possibility of an illness,
but nonetheless must be delivered by health professionals
because it is the right and need of the survivors of can-
cer. The participants also revealed that they were looking
for and found out the stages of their disease from internet
sources and that sometimes the information obtained was
not necessarily accurate and of quality.
The theme ‘‘various responses to fear of recurrence’’
illustrated that the individual’s perceptions on their diseases
play an important role in the fear of recurrence. The treat-
ments undertaken by women suffering from gynaecological
cancer may have short- and long-term effects. This can have
psychological impacts on women.12 Memories of previous
treatment procedures, such as surgery, chemotherapy, and
radiation are another fear associated with relapse. This was
also conveyed by Shay, Carpentier, and Vernon where the
fear of recurrence associated with previous treatment pro-
cesses will bring back memory related to the lengthy and
unpleasant process of cancer treatment.15
A qualitative research study on breast cancer survivors
in Turkey revealed fear that excessively recalling previous
treatment processes could lead to fear of relapse.13 This
was also revealed by the participants of this study who said
that they were afraid of the radiation procedure, which was
considered to be a more painful type of treatment since it
gave the feeling of burning sensation. This was also revealed
in the study by Walailak which proposed that recovery after
surgery was faster, while the effects of radiation took longer
to heal.16
On screening examination, the participants re-imagined
the tool which caused anxiety among participants. Parti-
cipants revealed that this had an impact, such as stress,
difficulty sleeping, and eating disorders as these feelings
haunt the participants’ daily lives. The fear of relapse was
revealed in a study in Turkey by Inan and Ustun that explored
S354
the factors that could trigger fear of relapse at night and
thinking about things relating to physical health, which
results in sleeping difficulty.14 This was also expressed by
participants, and even cancer survivors who have survived
for nine years.
The qualitative study according to Inan and Ustun
revealed that examinations after completing treatment
therapies gave rise to fear of relapse.14 This is in line with
research findings from Hanprasertpong that discovered that
breast cancer patients were worried about periodic exam-
inations and its results.17 The same thing was discovered
by this study that the participants were worried when they
were going to do a re-examination. Furthermore, according
to Mutsaers,18 thoughts about recurrence are beyond their
control, and relapse fear is identical to the fear of death,
affecting the severity of their relapse fears.19
The limitation to this study was that the diagnoses were
limited to only three medical diagnoses instead of all gynae-
cological cancers, thereby the aspect of maximum variation
in the samples is not fulfilled. Another limitation to this
study was that there were no participants who has had/was
having recurrence so no comparisons could be made on the
experiences of participants who has had a relapse with those
who has never had one.
The findings of this study indicated that health workers
played a smaller role in meeting the needs for information
on the patients’ health after the completion of treatment
therapies. It is suggested that the role of nurses in providing
information relating to survivors’ health is critical, includ-
ing when delivering bad news to survivors of gynaecological
cancer that the cancer can return or relapse.
Conclusion
This study explored the perception of relapse from the
gynaecological cancer survivors’ perspectives. Triggering
factors for fear of recurrence, including the lack of fam-
ily support and information sources which caused various
responses to fear of recurrence. These included fear of
recurrence, fear of death, fear of not being able to have
offspring, and fear of going through past procedures. These
fears can emerge at any time and greatly affect their every-
day lives, both emotionally and psychologically.
The participants in this study expressed hope that meet-
ings among fellow cancer survivors are facilitated as a forum
for information sharing and to encourage fellow survivors.
Participants also hoped to get more information from health
workers on the future of their illnesses after completing
cancer treatments.
Conflict of interest
The authors declare no conflict of interest.
Acknowledgement
This study was funded by DRPM Unversitas Indonesia through
Hibah PITTA B (No. NKB-0504/UN2.R3.1/HKP.05.00/2019).
 Enfermería Clínica 31 (2021) S352---S355
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