Health-related Problems and Lived Experiences of Breast Cancer Survivors: A Mixed-Methods Study

INTRODUCTION

Breast cancer (BC) is the leading cause of morbidity and mortality amongst women worldwide. According to the National Cancer Institute, around 7.2% of deaths from cancer were caused by BC.^[1] In India, it is estimated that one in every 28 women is at risk of developing BC^[2] as compared to one in every eight women in Europe and the USA.^[3] In Indian women, BC is the most common cancer, followed by cervical, uterine and ovarian cancer.^[4]

A majority of BC cases are managed with surgery followed by adjuvant treatment such as chemotherapy, radiotherapy and targeted and hormonal therapy to treat residual micro-metastatic disease.^[5] Various studies have shown that patients treated with adjuvant therapies might experience physical and psychological problems. Breast surgery, mainly mastectomy, is often associated with a disturbance in body image. This can lead to negative psychological effects, such as impacting self-esteem and quality of life (QOL).^[6] Chemotherapy and radiotherapy cause weight loss, vomiting, weakness, hair loss, skin discolourations, shoulder stiffness, arm oedema and cognitive dysfunction that disturb their daily activities.^[7] On the other hand, after completion of the treatment, BC patients with oestrogen receptor-positive cancer are treated with systemic hormonal therapy, which further leads to hot flushes, muscular cramps, joint stiffness, joint pains and a loss of libido^[8] which can be distressing for the patients. Furthermore, treatment causes sexual and fertility issues, such as decreased sexual desire, avoidance of sexual intimacy, irregular menstruation and disturbance in ovarian functions leading to infertility.^[9]

In India, BC patients face new challenges when their treatment is completed. Life for survivors is never the same again, whether physically, cognitively or socially. The 1^st year after therapy has been reported to be the most difficult.^[10] A study reported that BC survivors often experience fatigue, neuropathy and cognitive impairment as a result of treatment-related side effects. The most prevalent survivorship issues were fatigue (60%), shoulder stiffness (59.6%), body/joint pain (63.5%), menopause (73.3%) and loss of sexual desire (60%).^[11] It is vital to have a thorough understanding of the issues faced by BC survivors to provide post-treatment care effectively. The assessment of problems can serve as a basis for modifying follow-up care. The experiences and health problems of BC survivors in India remain underreported and inadequately studied. Hence, this study assessed lived experiences and health problems seen in BC survivors after the completion of their cancer treatment.

MATERIALS AND METHODS

RESULTS

Problems experienced by BC survivors

Problems with the decreasing frequency were fatigue, sexual dysfunction (decreased libido, painful sexual intercourse and vaginal dryness) and lymphoedema with shoulder stiffness, respectively. Numbness on the affected side was reported by 40% of participants. More than 40% of the participants reported trouble in concentration (43%), followed by disturbed body image (30%) and pain at the operated site (26%), respectively [Figure 1].

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Figure 1:

Health problems among the patients.

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Qualitative survey

During the analysis, 8 themes and 15 subthemes were identified and depicted in Figure 2.

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Figure 2:

Themes and sub-themes codes for all participants.

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Post-diagnosis reaction

Feeling of fear and worry

The diagnosis of cancer was often a traumatic experience for the patients, characterised by fear, confusion and uncertainty about the future. Many participants reported feeling overwhelmed and scared upon receiving their diagnosis. For example, one participant shared:

‘Patient said that the name of the cancer makes the person feel that her death is standing in front of her, giving her tension and stress in life. The feeling that her children are not settled yet in their lives makes her feel more down.’ (Participant no 2).

Key themes: The themes and sub-themes that emerged under the problems of BC survivors are represented below in Figure 2.

Fear of abandoning the children

After receiving the news of cancer, they worry about their children’s future as the illness has the potential to be severe. For example, one participant shared:

‘The patient feels tense and worried about the fate of her daughter’s life, as she is too young, and after her death, who will take responsibility for her daughter’s marriage?’ (participant no 6). Some patients also verbalised that they beg for some more time from God so that they can settle their children in their lives, as their children are very young.

Spirituality and misconception

Trust in god

The study findings demonstrated that BC significantly affects spiritual beliefs such as the hope of life, firm belief in destiny and trust in divine decisions. From the participant’s point of view, ‘after the diagnosis of cancer, she started believing in God more. After the operation, when her reports came back normal with no tumor, her trust in God deepened, which she couldn’t express in words. Everyone has to die 1 day, but she felt lucky that she survived and fought with the disease.’ (Participant 5)

Anger in god

These patients often have negative feelings after knowing that they have cancer. As it is, the normal phenomenon for any negative experience that exhibits denial and anger.

‘As the patient verbalised that she had done some sins in her past birth, as a result of which she has been punished with this deadly disease ‘Cancer’ by the god. Sometimes, she doesn’t want to live and wants to quit life, but due to her children, she has to live and tolerate all the pains of life.’ (Participant 13)

Economic impact

Financial problem

BC had caused unemployment, anticipated job loss, saved money for their children and borrowed money for treatment.

‘One participant expressed that my husband works in a private company, so there is a financial problem that puts the family in a dilemma of whether to spend money on the patient’s medicines and treatment or save it for their daughter’s marriage, as both are equally important.’ (Participant no 6) Another participant also mentioned that ‘her son has borrowed money from many people for her treatment. Whenever she comes for follow-up, the person who comes along with her for follow-up, she has to pay him too.’ (Participant no 4)

Disturbed body image

Self and body image disruption

These survivors often deal with disrupted body image and physical appearance. After surgery, many experience altered body physique, alopecia, visible scars on their bodies, discrimination from society and hurtful comments. These changes can lead to lower self-esteem and feelings of embarrassment due to altered body appearance. Few participants describe such an instance:

‘The patient feels hesitant and unwilling to go outside and meet people, as she feels embarrassed about her disturbed body image. Her husband’s job demands that he meet new people, so he asks the patient to come along with him, but she is unwilling to go.’ (Participant no 14)

‘The patient feels that she has lost her old personality after the disease. Whenever she sees her face, she feels that her face has changed drastically from the original one.’ (Participant no 2) ‘Earlier patient used to have long hair and he always used to make a bun, but now she has short hair. People ask her whether she has undergone a haircut; if so, then that’s good, as she is getting modern. So replies that yes, she underwent a haircut, but never tells them it is due to her breast surgery.’ (Participant no 10)

Living with physical problems

Participants reported a range of physical symptoms such as arm oedema, fatigue, shoulder stiffness, weight gain, paraesthesia and hot flashes. These symptoms significantly impacted their daily functioning. Many participants expressed these problems as

‘The patient reported that her hand is getting swollen and tight. There is a feeling of heaviness in her hand, and swelling increases after doing some work.’ (Participant No. 9)

‘The patient said that after doing some work, she should eat something as she needs energy. After eating and resting for a while, she feels better.’ (Participant No. 13)

‘The patient said that she is unable to put clothes on by herself due to the stiffness of her muscles, so her son helps her with that. She can take things from the lower shelf of the cupboard, but can’t from the upper shelf.’ (Participant No. 7)

‘The patient said that she has gained weight, and she has to work hard to lose it. She walks, eats specific things, and drinks a lot of water to lose weight, but after so much hard work, she has reduced very little.’ (Participant No. 15)

‘The patient feels numbness in her fingertips. While cutting vegetables, they slip off her hand, and she is unable to cut them quickly.’ (Participant No. 4)

‘The patient feels extra heat and is unable to tolerate warmth in a hot environment. She perspires in the cold season, also. Like today morning, it was cold, when I was going to the kitchen, I started sweating. During the night, she has to remove the blanket also.’ (Participant No. 8)

Seeking information

Post-treatment education

Participants generally expressed trust and appreciation for their healthcare providers. Many valued the support and guidance received from doctors and other healthcare professionals. Two of the participants stated, ‘The Patient asked if this problem affects the kidney? Patient heard that due to this disease kidneys fail instantly.’ ‘Another patient asked what to do as she had to go to the washroom again and again after every ½ h, and she is unable to control the urge.’ (Participant No. 5)

Needs help with household chores

Daily work in the house

BC significantly affected participants’ daily activities and household chores. ‘The patient reported that she can perform daily household work but is not able to do work that requires energy, like opening a nut. She is unable to open any object that is completely closed.’ (Participant No. 12)

Altered sexuality

Disturbed sexual life

BC survivors have expressed concerns about marriage, including denial and uncertainty about the future. One patient verbalised that ‘her husband usually asks her to have sex, but she avoids it due to the fear that the disease will spread to her husband through sexual intercourse’. (Participant no 3)

DISCUSSION

A mixed-methods design was used in the study to explore the physical problems and experiences of BC survivors. We found that the women who have completed BC treatment successfully would face at least one of the problems. A study reported that after the completion of primary treatment, cancer patients experienced multiple symptoms, with a mean number of 6.8 symptoms per patient.^[15] Another study conducted by Cheng et al. reported that patients experienced more than 10 symptoms in nearly half of the patients (47%).^[16]

In the current study, the most common reported physical problems were fatigue (90%), lack of interest in sex (67%), painful intercourse (42%), vaginal dryness (63%) and cognitive problems (forgetfulness [38%], shoulder stiffness [50%] and lymphoedema [30%]). This is congruent with the previously published study by Sapkota et al.^[17] where they found that common physical problems encountered by the BCSs were tiredness (61%), lack of energy (57%), forgetfulness (57%) and lack of interest in sex (52%). Janz et al. also found that fatigue (81.7%), breast symptoms (72.1%), sleep disturbance (57%) and arm symptoms (55.6%) were the main symptoms experienced after completion of the primary treatment.^[15]

Fatigue associated with cancer is a subjective symptom that is experienced by nearly all cancer patients; however, BC survivors have more issues compared to other cancers. In the present study, almost all the patients suffered from fatigue (90%), which could be due to the treatment (chemotherapy and radiotherapy) they had received. Similarly, scientific literature reported that almost every patient had fatigue, with a prevalence of up to 99%.^[18] An increase in pro-inflammatory cytokines, dysregulation of the hypothalamic– pituitary–adrenal axis, disruption of circadian rhythms, muscle loss, and cancer wasting are all proposed ways by which cancer treatment might produce fatigue.^[19]

The breast plays a major role in body image, sexual life and feminism. Sexuality is an essential and basic need of humans that can be impaired during and after cancer treatment. Cancer therapy can have deteriorating effects on the sexual health of patients due to changes in body image, fertility and physical conditions such as fatigue and weakness, leading to sexual dysfunction.^[20] In the present study, participants presented with problems related to sexual desire (67%), pain during and after the sexual act (42%) and vaginal dryness (63%). With chemotherapy-induced menopause, most of the patients experienced pain or discomfort during intercourse, due to a lack of lubrication during penetration and sexual intercourse. This could be due to 20% having chemo-pause, and 60% of the women were post-menopausal in the present study. A qualitative aspect of the current study also found that women who were menopausal had more difficulty engaging in sexual activity due to pain and vaginal dryness. A systematic review by Chang et al.^[21] showed a reduced frequency of sexual activity in women after treatment. Furthermore, difficulties in sexual life, consisting of post-treatment disturbances in body image and feelings of unattractiveness, seem to be highly prevalent amongst BC survivors.^[22] In the current study, participants expressed a sense of loss of identity following their illness, with one stating that when she looked at her face, she felt that it had changed drastically from how it once was. Our results are in line with a study on Nigerian women after mastectomy, demonstrating that surgery had a remarkable influence on women’s perceptions of femininity and reduced their sexual function.^[9]

After completion of treatment, many patients suffer from serious complaints in their arms and shoulders, such as decreased joint mobility, muscle strength, pain and lymphoedema, leading to limitations in activities of daily living (ADL).^[23] In the present study, patients reported arm/shoulder stiffness (50%), lymphoedema (30%) and numbness/tingling sensation on the affected arm (40%). Other studies also restricted shoulder movements, decreased upper extremity strength and impaired shoulder function.^[24] A qualitative aspect of this study offers insight into patients’ experiences, as many verbalised that impaired shoulder function hindered their ability to perform ADLs, such as combing their hair, lifting jars from upper cabinets, hanging clothes to dry and applying soap to their back. A study conducted amongst BC patients following treatment also found that limitations in shoulder movement also interfered with daily activities, including reaching behind the head to wash or comb hair and reaching items high on a shelf.^[21]

Patients also reported that after the treatment, they felt ants crawling on their arm and at the operated site. They felt numbness in their fingertips. While cutting vegetables, they slip out of their hands and are unable to cut them quickly. This may be due to the neurological disturbances following BC treatment that result in nerve damage due to surgery or radiation exposure, neuropathy due to chemotherapy or perhaps lymphoedema. The women with lymphoedema showed reduced sensation in the arm, which may be the result of intercostobrachial or other nerve damage during axillary node dissection, leading to subsequent loss of sensory function.^[25]

In this study, we also found that 14% of the patients had a body mass index above 30 kg/m² and thus would be considered to be obese. The patient also verbalised that they have gained weight, and they have to work hard to lose it. They walk, eat specific things and drink a lot of water to lose weight, but after so much effort, they have lost very little weight. These findings are in agreement with the previous study in which obesity and weight gain, along with a lack of physical activity, were reported in BC patients.^[26] These findings suggest that weight management can be an important part of rehabilitation following BC treatment to help prevent and control lymphoedema as well as reduce the risk of cancer recurrence and the development of other chronic diseases.

The present study showed that around half of the BCSs had cognitive impairment after the treatment. Our results are in line with the previous study conducted by Boscher et al., which reported that about 50% of BCSs had current cognitive complaints.^[27] Chemotherapy used for BC, such as 5-fluorouracil, can cross the blood–brain barrier and cause a direct neurotoxic effect in the brain by damaging neurons or glial cells, causing ischaemic nerve damage and reducing hippocampal cells.^[28]

In-depth interviews with the patients brought out some important findings, such as fear of the disease, treatment and recurrence. This fear is expressed because of the lethal nature of the disease and the stress it may cause in patients. These findings were consistent with previous published studies.^[29,30] The spiritual aspect has played a major role in the treatment of BC survivors. Participants have stated that they began to believe in God more after the cancer diagnosis. After the operation, when their reports came normal with no tumour, their trust in God deepened, which they could not express in words. Everyone has to die 1 day, but they felt lucky that she survived and fought the disease. Similar findings were also reported in previous studies.^[16,30,31] In the present study, survivors believe that they contracted the disease because of their last birth sins; as a result, she has been punished with this deadly disease, Cancer, by God. Sometimes, she does not want to live and wants to quit life, but due to her children, she has to live and tolerate all the pains of life.

CONCLUSION

A substantial number of BC survivors experienced multiple physical problems following the completion of their primary treatment, with fatigue, sexual dysfunction and lymphoedema being the most commonly reported. The qualitative findings provided deeper insight into the lived experiences of survivors, revealing challenges related to body image, societal stigma and disruptions in sexual life. These issues significantly affected their overall well-being. Notably, the level of satisfaction with individualised nursing care played a critical role in shaping their recovery and QoL. These findings underscore the importance of comprehensive, patient-centred support for BC survivors to address both physical and psychosocial needs.