ANTICANCER RESEARCH 34: 1193-1200 (2014)

Experiences of Breast Cancer Survivors Participating in a

Tailored Exercise Intervention −A Qualitative Study
MINNA-LIISA LUOMA1, LIISA HAKAMIES-BLOMQVIST2, CARL BLOMQVIST3,
RIKU NIKANDER4, MILA GUSTAVSSON-LILIUS5 and TIINA SAARTO3

1National
Institute for Health and Welfare, Helsinki, Finland;
2Unit of Functional Capacity, National Institute for Health and Welfare, Helsinki, Finland;
3Department of Oncology, Helsinki University Central Hospital, Helsinki, Finland;
4The UKK Institute for Health Promotion Research, Tampere, Finland;
5Department of Psychology, University of Helsinki, Helsinki, Finland

Abstract. Aim: The aim of the study was to investigate how group for breast cancer survivors helped patients gain a
tailored exercise is experienced by cancer survivors. sense of mastery, restoring their self-esteem and
Patients and Methods: Twenty-five breast cancer survivors constructing a meaning for their cancer experience and its
who were recently treated with systemic adjuvant treatments impact on their lives.
attended tailored exercise classes as a part of a randomized
controlled exercise intervention study (Breast Cancer and The rehabilitation needs for breast cancer survivors have
Exercise, BREX). Focus group discussions with a median of increased significantly over the past decades in line with
four (range 3-6) participants in each group were conducted improved survival. Many survivors experience prolonged
to capture their individual experiences of their course of adverse physical and psychological effects such as fatigue,
illness, taking part in the exercise trial, the personal vasomotor symptoms and psychosocial distress (1, 2).
meaning of tailored exercise classes and the group. Results: Exercise seems to be a feasible and well-tolerated strategy
Attending the intervention in which the focus of attention for ameliorating breast cancer survivor’s physical and
was on physical rehabilitation was highly valued, since the psychological problems (3-9).
participants experienced both improved physical fitness and There is a growing body of evidence suggesting that
improved coping. Due to altered physical appearance and physical exercise is an effective intervention to improve
poor physical fitness, the participants felt that tailored quality of life (QoL) (5, 7, 9) and fatigue in patients with
exercise for patients with breast cancer reduced their breast cancer and survivors (3, 10-13). Participating in
barrier to start exercising. Peer support from the group was exercise programs after breast cancer treatment has been also
valued, especially that of sharing experiences, receiving reported to lead to improvement in body image (14, 15) and
psychological support and gaining a sense of normality. A feeling of sexual attractiveness (16). It has also a positive
sense of mastery over their disease through participating in effect on functional quality of life, anxiety and self-esteem
the intervention, i.e. better psychological functioning and (17). Despite the known benefits of exercise, physical
improved mood, was a consequence of better physical fitness activity levels fall significantly for many women after a
and of meeting other breast cancer survivors. Also diagnosis of breast cancer and also remain low after
participating in the study per se increases a sense of treatment completion (18, 19). However, women treated for
comfort and security with extra medical examinations and breast cancer are in general motivated to restart physical
follow-up. Conclusion: Participating in the tailored exercise activities after cancer treatment and to exercise (20).
Relatively little attention has been attributed to the
subjective experiences of patients participating in breast
cancer-tailored exercise programs. Most of the research
This article is freely accessible online. carried out is quantitative and uses predetermined scales,
rather than capturing the experience of the illness and
Correspondence to: Tiina Saarto, MD, Ph.D., Department of
Oncology, Helsinki University Central Hospital, P.O.Box 180,
rehabilitation as a whole. It is not yet very well understood
00029 HUS, Finland. Tel: +358 50470256, Fax: +358 947174247, which factors influence this population’s willingness to
e-mail: tiina.saarto@hus.fi participate in physical activities and how exercise contributes
to the adjustment process during cancer rehabilitation.

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 ANTICANCER RESEARCH 34: 1193-1200 (2014)

The breast cancer and exercise (BREX) study is a large Table I. Interview domains.
open prospective randomized clinical trial of physical exercise
Course of illness, treatments and illness experience
shortly after adjuvant treatment of breast cancer. The primary
Experiences of taking part in the exercise trial
objectives of the BREX study are to investigate the effects of Personal meaning of the exercise tailored to breast cancer patients
exercise intervention on QoL and bone health (21, 22). In the Personal meaning of the group
present study, an attempt was made to capture the individual Reasons to continue taking part in the trial
experiences of cancer survivors attending an exercise Barriers to start exercise after treatment
Participant’s view of personally meaningful outcomes of exercise
intervention tailored for patients with breast cancer. The aim
was to increase our understanding over the factors through
which exercise influences the adjustment process during
cancer rehabilitation.

opportunity for the participants to raise other related topics which

Patients and Methods were important to them.
A phenomenological research method was chosen to interpret the
Participants in focus groups were recruited from the BREX trial qualitative data (25). The method comprises four essential steps: i)
(23). The BREX study is an open prospective multicenter phase III The investigator reads the entire description to obtain a general idea
randomised trial with Finnish patients with breast cancer aimed at of the whole statement. By thoroughly reading and rereading each
investigating physical training as a rehabilitation of the patients. A interview file the researcher acquires an idea of the women’s
total of 500 women aged from 35 to 68 years with newly-diagnosed experience. ii) Discrimination of meaningful units within the
invasive breast cancer who had been treated with adjuvant psychological perspective and with focus on the phenomenon being
chemotherapy or radiotherapy within four months (or started investigated. It is impossible to analyze the entire interview file
endocrine therapy no more than four months earlier) were included simultaneously; it must thus be broken down into manageable units.
in the study. Patients not capable of training, such as women with The meaningful units in this phase of study were first relatively
other serious illnesses, were excluded. The adjuvant treatment was broad and followed the broad areas of the interview. The researcher
carried out according to clinical guidelines. Patients who were repeated this phase many times and, as a result, the meaningful units
randomized into the exercise group participated in a 12-month that emerged as a consequence of the analysis sharpened and
supervised exercise intervention. Training included a guided aerobic narrowed. iii) Transformation of the participants’ everyday
exercise session once a week (the effective part being either step expressions into psychological language. These transformations
aerobic or circuit training in alternate weeks in small training groups were necessary because we wished to elucidate the psychological
of 5-15 participants) and similar home exercise sessions three times- aspects in depth. iv) Synthesis of transformed meaningful units into
a-week. The follow-up is 10 years, including measurements of a consistent statement. The investigator and the co-investigator
weight, height, body mass index, fat percentage, bone mineral performed the analyses.
density, cholesterol, glucose and insulin, physical fitness tests (2-
km walking test, figure of eight running test) and questionnaires for Results
quality of life. The recruitment process and the exercise program of
the study have been reported in more detail elsewhere (23, 24).
The local Ethical Committee of Helsinki University Hospital
The mean age of participants was 54 (range=43-67) years.
approved of the focus group study protocol (Dnro 269/E6/05) and The survivors were very sure about participating in the
written informed consent was obtained from all participants before BREX study and in the tailored exercise classes. They were
the interview. Twenty-five women volunteers included in the BREX willing to discuss their cancer and their experiences
study exercise group participated in the focus group sessions. They regarding training. They felt that through participation in the
were contacted by a researcher by phone who gave the information study, they gained multiple benefits. In addition to free
and sent the information consent form. Each woman participated in
supervised training classes once-a-week for one year, they
one of seven focus groups, with an average of four women in each
group (range 3-6). Each focus group was established from the
had extensive medical examinations and a closer follow-up
participants of the same training group of the BREX study. The at the University hospital. They also valued the fact that they
different training groups had trained together 4-11 months at the contributed to the development of new interventions for
time of the interview. The focus groups were facilitated and all patients with breast cancer, and that in the future other
group discussions were lead by the psychologists. One co-researcher patients might profit from their experience.
also attended the focus groups and took notes of the discussion. As
the groups were set up, the women were reminded of the purpose Impact on physical appearance and fitness. Since the
and background of the BREX study. After explanation of the study majority of patients were treated after surgery with
and assurance of confidentiality, verbal consent was ascertained
chemotherapy and postoperative radiotherapy, they suffered
before audiotaping. All focus group recordings were transcribed
verbatim. The duration of the focus group interviews ranged from from alopecia and had scars. Some patients also felt that they
55 to 76 minutes, the mean length was one hour. looked very ill. These changes in appearance were for many
The focus groups were guided by a semi-structured schedule the patients a barrier to joining ordinary group exercise. The
domains of which are presented in Table I. There was also an patients felt that the tailored intervention for breast cancer

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survivors only helped them to join an exercise group. One of vulnerable. After surgery, some of the patients felt uncertain
the reasons that reduced the barrier was the knowledge that regarding what kind of exercise is safe. They understood the
their changed appearance was a common issue in the group. importance of the physical activity and wanted to do the
They felt that it was easier not to wear a wig when exercising right things. Therefore they emphasized the importance of
and have a shower after exercise, since there was no need to having a skilled instructor. They appreciated the fact that the
explain their appearance. They felt relieved that nobody instructor understood issues crucial for recovery from breast
stared or felt sorry for them because of their illness. cancer. They felt safe to exercise, because they could trust
that the movements they were asked to do were suitable for
“I hate to be the one that people look at. Or they try not to them. They felt that they did not need to explain why their
look, but they’ll look anyway. (Makes me always think how physical performance was so poor nor why their movements
retarded people feel when people… ) You know, when you were restricted.
walk by and you just notice that eyes are staring”.
“I felt it was really important that we are instructed to do
It was also helpful to deal with hair loss through sharing exercises that suit us. I’m really careful about how my hand
experiences and jokes. and spine works and moves. I didn’t know how much strain I
could put on it. And how much I can stretch it”.
“Although I wasn’t bothered by the fact that I had no hair,
but if I had gone to an open exercise class, I’m sure others Women expressed the desire to switch identity from being a
would have noticed, you know, what kind a lezzie is that, breast cancer patient to being a healthy woman again.
shaved all her hair with a razor. You don’t feel like that, that Participating in the tailored-exercise group helped them to
you’d need to explain to anybody why you have short hair. gain normality because they felt that they were not treated
Or just recently we had such a laugh when we were noticing, like patients. They appreciated the fact that the instructor
that oh yeah, your hair has grown that much and look how tailored the classes so that the activity was manageable;
your hair curls”. however, they also valued that she made them exercise
intensely, like healthy persons. They felt normal, since in this
The women valued the size of the groups that was only 10- group, they felt that limitations were allowed.
15 patients and the fact that they were about the same age.
The importance of exercising with women with similar “But you don’t get the feeling that here you are ill. I think
experiences was emphasized, since they felt that they did not it’s really well planned. All the exercises and everybody know
need to take into account other people when they were how fit they are and do everything according to how they feel
undressing, dressing or taking a shower after the exercise. It that day”.
was important that the group was only for breast cancer
patients. When the patients finish their cancer treatments, they often
have remaining symptoms and illness-related feelings. Many
“Well I’m not worried, what do I look like. But you know, of them felt left alone after active treatment. There was also
others feel uncomfortable and there are unnecessary a fear of recurrence; therefore, they felt safe to be followed
questions. Just like in our apartment building’s common up for 10 years.
sauna. And you don’t know any of them that closely”.
“Then there was this funny thought I had when the
After their treatment, the women experienced reduced treatments were over, that I didn’t feel safe, thinking that now
physical activity and their physical fitness was poor. Many I’ll be left on my own and alone with this scary thing...Here’s
patients were surprised that the rehabilitation had been so an opportunity to get some peer support and then there are
slow and that feelings of fatigue were still present. these examinations. It felt safer although it might not be”.

“Well I was in a really bad shape to start with. I had no Participating in the BREX trial also meant that the patients
energy, I probably was the worst one in the start. Then had more detailed medical follow-up’s, extra laboratory and
during the summer I got slowly fitter. Now in the Autumn I’ve medical examinations, and unlimited access to the University
really noticed it. It’s like I’ve gotten fitter, but the Hospital’s Oncology Department. Some participants viewed
chemotherapy treatments did make me feel really bad and the BREX participation as an opportunity for additional
tired for a long time”. medical care since they were monitored very closely. This
seemed to help patients adjust psychologically and to feel
Value of the intervention and tailored exercise program per more confident through gaining more control over a possible
se. After treatments, patients often feel very weak and recurrence of their illness.

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“I knew that in that study they would do examinations I The patients had lots of questions concerning their illness
wouldn’t otherwise go to. So I got tests done like bone and side-effects, however being no longer in active treatment,
density that wouldn’t have been done on me otherwise. I they had nobody to ask. Therefore the peer support received
thought it was great. They took all x-rays and all from other members of the exercise group was important and
examinations They took good care of me and I felt safe”. relieving.

Influence on QoL. The cancer experience often undermines “I’m under the impression that if you ask any doctor at the
one’s sense of control over one’s body and over life in cancer clinic, it’s just normal in your conditions. That’s all.
general. Exercise had significant impact in gaining control So then it feels normal when 10 others have something
over one’s body. Most patients felt that their physical fitness similar. Then you believe it, I do anyway”.
was impaired due to cancer treatments, especially after
chemotherapy. Physical recovery was very rewarding. Many Peer support was also important for gaining a sense of
patients felt that their physical fitness first was so poor that normality. In their normal life, e.g. at their workplace, the
they should not attend regular exercise groups. They felt patients were often asked how they felt, if they were OK. In
gratified when they noticed their physical fitness increase. this situation, when they were in the transition phase towards
being healthy again, these questions reminded them of the
“You feel kind of clumsy and slow after the treatments. I’m illness experience. They did not want to carry a cancer
not the same as I was before and don’t know if I ever will stigma. They appreciated the fact that when they attended the
be. But I’ve gotten better, I don’t break into sweat quite as group they were left in peace. There was no need to ask
easily as in the beginning! During the year you’ve noticed “how are you” or “how do you feel”, since there was a
that you’re developing and have already developed”. common understanding of the cancer-related feelings. They
felt that in this group, talking about the illness was optional
One of the most important benefits was more increased well- since the main focus was on exercise. Hence, the group was
being and increased energy levels. The patients emphasized somewhat paradoxically also seen as a chance to forget their
how much better they felt after exercise. When they noticed illness for a while.
that their physical fitness was getting better and feelings of
fatigue were not that predominant, it further motivated them “I’m so sick of everybody at work asking how am I doing. I
to exercise. This was an important part of re-gaining well- can’t forget it. This group doesn’t ask me all the time how
being. I’m doing. That’s a really good thing. They know without
asking how I’m doing”.
“I was in a really bad shape, somehow really tired. I feel so
much better after I’ve started exercising. It really makes a On the other hand, since the reference group was other
difference”. women who had had the illness experience they could all
gain a sense of normality. They could talk about the illness
A sense of mastery over their disease through participating in very honestly and freely without feeling somehow weird, and
the exercise was fulfilled also through gaining better they did not have to feel shame when they talked about
psychological functioning and improved mood. The patients cancer. They viewed themselves as one of those suffering
felt that this was consequence of better physical fitness and from cancer and knowing that the illness experience was a
of meeting other patients. part of their life.

“During the summer my physical condition was at its worst, “And nobody pays any attention to the fact that the illness is
but when you come here and see that you have the energy to talked about. And it’s not like everybody would start listening
do lots of stuff and are feeling well, that lifts your spirits. So to what they are talking about… And I got annoyed when
carry on. When you notice that you are able to do more, so everybody kept saying that wow you look good. I said, do I
why not”. need to crawl here on my hand and knees to make you happy.
They were all always really surprised”.
Peer support. Peer support was one of the main benefits and
it had many different aspects. This tailored exercise program The women often felt that their loved ones also had
offered support from others in the same situation. The group difficulties facing their cancer. They felt that they could not
was important in gaining and sharing information on cancer, burden their relatives and friends too much by talking about
on treatment and on side-effects, as well as practical their cancer experience. They felt that people without similar
information on where to get help if needed. It provided a experience could not understand their need to talk. The
reference point for evaluating one’s own physical health. exercise group was a platform for them to talk about the

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illness and there was no need to hurry up and assume a sense Discussion
of wellness. They felt that most other people believed that
the experience is over when the treatments are over. In the present study, we investigated the experiences of and
meanings attributed to attending a supervised exercise
“I feel like, that I’ve talked so much about my illness that intervention tailored to breast cancer patients shortly after
everybody is a bit like … (laughing)… ‘why don’t you cancer treatments i.e. during the rehabilitation period. After
become healthy every now and then’”. breast cancer treatments, women face the transition from
being ill to being healthy again. This has both physical and
The patients were living in a transition phase between being social implications, such as cutting the close ties to the
a patient and being a healthy woman again. They had hospital and the healthcare system, and returning to work.
finished their cancer treatments and were regarded as Nevertheless, after treatment, many patients still have long-
healthy, and yet they suffered from many long-term side- term side-effects such as alopecia, fatigue, insomnia,
effects from treatments, such as poor physical performance, menopausal symptoms and depression (26); their recovery is
alopecia, hot flushes and insomnia, and many of them had not yet complete.
feelings of depression. They also experienced anxiety about The BREX study’s tailored intervention in which the focus
their uncertain future. These were negative consequences of of attention was on physical rehabilitation was very valued,
breast cancer and treatment. Some women felt that this group since patients experienced both improved physical fitness
reminded them about their cancer. Attending the exercise and improved coping. We previously reported the
group had an important impact in the transition from sick improvement in physical activity and performance of the
patient to healthy woman. BREX study participants and the significant correlation
between increased physical activity and improved QoL (21).
“Maybe this year is pretty good after all. But this group takes During the rehabilitation period i.e. during the first year after
me back to cancer. Now I feel like that phase is over. At least the treatments, spontaneous recovery is significant. All kinds
sometimes it feels like, that you don’t think about it that often. of physical activity are related to improved physical fitness
When you say to the others somebody always says something, and QoL (21). However, because of the altered physical
that they’ve been to the doctors and experienced this and that. appearance and poor physical fitness after the treatments, the
This reminds you. That maybe it’s a good time to stop, participants of the exercise group felt that the tailored
because you need to look forward to and live your life”. exercise solely for breast cancer patients helped them to join
the exercise group. The knowledge that their changed
A re-appraisal of life and search for meaning was expressed physical appearance was a common issue in the group and
through thoughts about what had been the overall impact of there was no need to hide their illness or explain why their
the illness and that of participating in the tailored exercise physical performance was so poor was especially helpful.
interventions. Participants expressed a re-appraisal of their They also felt that the skilled instructor made them train in a
life due to illness. Participating in the exercise intervention way that was suitable and effective for them. They
had an impact on their changes in lifestyle; for many appreciated the fact that the instructor understood issues
patients, the main change was not to prioritize work as high crucial for the recovery from breast cancer.
as before. The physical exercise was a central part of the
rehabilitation, but important benefits were also attributed to
“I feel the time is good because then I couldn’t stay at work the group as source of practical and psychological support
all hours. It was a really good thing for me, that I have to that helped these women get a new grip on their lives. Peer
leave and I will do so on other days as well. I’m not gonna support had many important dimensions, especially regarding
stay there and be some working hero”. sharing experiences and of gaining sense of normality. By
comparing their experiences they felt that the side-effects
The group was seen as a useful forum to make new friends. that they experienced were normal in this phase of
The patients also developed new, positive cognition regarding rehabilitation. They felt that they received psychological
their illness and relating to the exercise intervention. support from others. When these women thus had a reference
group consisting of other breast cancer survivors they had no
“I’ve noticed that my spirits are clearly better than they were need to hide their illness and their feelings relating to having
at some stage. But it’s hard to know what it all comes down had breast cancer. Simultaneously, they felt no need
to. When I was working at one point I was really stressed out comment on it either; they were left in peace, both from
and all. Maybe it’s because of this disease you have had to feelings of being an alien and of the intrusion of healthy
start finding different positive things that has gotten my people’s well-meaning concern. The supportive atmosphere
spirits up generally as well”. of the exercise group also helped them to re-appraise their

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lives in terms of, e.g. the positive influence their illness Acknowlegements
experience had had on their priorities.
It should be noted that the patients who participated in This study was supported by grants from The Finnish Cancer
the BREX study (and thus had passed its exclusion criteria) Institute, The Finnish Cancer Foundation, the Finnish Cultural
were younger and healthier than patients with breast cancer Foundation, the Finnish Academy, the Social Insurance Institution of
Finland and the special Government grant for health science research.
in general (23). Secondly, the participants had a markedly
The study is sponsored by the Finnish Breast Cancer Group. We wish
positive attitude towards exercise in general and the present to thank all the women who participated in this study.
intervention. Therefore the findings probably tell mostly
about the gains these women had. Thirdly, being included Refrences
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22 Saarto T, Sievanen H, Kellokumpu-Lehtinen P, Nikander R,
Vehmanen L, Huovinen R, Kautiainen H, Järvenpää S, Penttinen
HM, Utriainen M, Jääskeläinen AS, Elme A, Ruohola J, Palva
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C: Effect of supervised and home exercise training on bone Received December 11, 2013
mineral density among breast cancer patients. A 12-month Revised January 7, 2014
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