Considering that breast cancer diagnosis affects a woman physically and emotionally, treatment during the therapy phase requires enthusiasm. Therefore, this study aims to explore breast cancer survivors’ experiences with treatment. A qualitative methodology was used, while the data were collected with in-depth interviews and analyzed using interpretative phenomenological analysis. The study samples included up to five individuals who met the inclusion criteria of having stage III breast cancer for longer than 5 years without metastases and were obtained using the purposive sampling technique. Two themes emerged from the interview data, namely, the past events and the psychological state of breast cancer patients. There were four subthemes under the overall theme of the events, including risk factors for breast cancer, symptoms, extensive therapy, and preventing metastases. Meanwhile, the psychological state theme contained six sub-themes, including rejection and anger against diagnosis, despair, embracing the disease, self-concept, and stress. Before beginning treatment, patients implicitly expect clinicians to provide them with a thorough explanation of how chemotherapy works. Based on the results, it can be concluded that supporting and empowering breast cancer patients is a struggle for caregivers and healthcare professionals.
Key words: Breast cancer, experience, survivor
*Corresponding author: Lilis Novitarum, Nursing Department, STIKes Santa Elisabeth Medan, Medan, Indonesia. Email: lilisnovit@stikeselisabethmedan.ac.id
Submitted: 9 September 2022. Accepted: 12 October 2022. Published: 26 November 2022
©2022 Novitarum L et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0). License (http://creativecommons.org/licenses/by-nc/4.0/)
According to ACS,1 there are 48,988 cases of breast cancer worldwide, making it the most common type of cancer in women. In 2018, it accounted for 58,256 cases in Indonesia or 16.7% of the country’s total 348,809 cancer cases. According to basic health research conducted in 2018, Indonesia’s cancer prevalence increased by 0.4%, from 1.4% to 1.8%.2 Furthermore, in 2020, WHO stated that about 400,000 new cases of cancer have been reported in Indonesia, making it the eighth most cancer-suffering nation globally. In Indonesia, breast cancer is the second leading cause of cancer-related death, accounting for 21.4% of all deaths. North Sumatra ranks as the 13th biggest contributor to breast cancer in the country with a prevalence of 1.55 cases per 1,000 people.2 The highest incidence was found in Medan with an estimated 856 cases in 2019.
Moreover, noncommunicable diseases are becoming more prevalent due to the rise in breast cancer incidence. Risk factors for these diseases frequently stem from unhealthy lifestyles such as alcohol drinking and smoking, habits including exercising, eating fruits and vegetables,2 as well as other factors, namely, obesity,3,4 family history of breast cancer,4,5 and aging.4,6 Inadequate socioeconomic conditions, ignorance, and an unhealthy lifestyle also contribute to the development of breast cancer.5 To lessen the severity and the likelihood of developing this disease, data collection or surveys are needed,7 as well as recommendations for potential actions,8,20 early identification by training and motivation,9 empowerment to meet the demands of patients,10 and evaluation to determine the reasons for anxiety in breast cancer patients.11 Breast cancer affects a patient’s physical and psychological well-being and might possibly lead to mortality. Humans are innately social beings, nestled inside naturally occurring networks that supply essential resources and knowledge.21 Therefore, this study aims to explore breast cancer survivors’ experiences with the treatment.
This study used a qualitative approach with the interpretative phenomenological analysis (IPA) method. Data collection was conducted with in-depth interviews, while the samples were obtained using purposive sampling. A total of five survivors participated with inclusion criteria being diagnosed with stage III breast cancer for more than 5 years, not metastasizing, and living in Medan city.
The data collection method used was in-depth interviews; the process began by making a framework that will be given to the participants in the form of interview questions. The questions addressed to the participants were open-ended and do not lead directly to study questions. The entire process of data collection through interviews was carried out using a voice recorder with the consent of the subject. The interview results in the form of voice recordings were then converted into written form or transcripts.
The data were analyzed using IPA in the following steps: (1) Read the transcript repeatedly. This stage required reading the transcripts that had been obtained repeatedly. (2) Initial noting. The meaning of the words contained and the language used were examined in the exploratory stage with notes or comments. These exploratory comments include: (a) Descriptive; (b) Linguistic; and (c) Conceptual comments. (3) Developing emergent themes. (4) Looking for a common relationship between themes. (5) Moving on to the next case (6) Looking for similar patterns between cases. (7) Describing the main theme.
This study used five informants who met the inclusion criteria, and their demographic data are shown in Table 1.
TABLE 1. Informant demographic data.
| Informant | Age (years) | Education | Type of work |
|---|---|---|---|
| I1 | 49 | Postgraduate | Housewife |
| I2 | 43 | Senior High School | Housewife |
| I3 | 54 | Senior High School | Housewife |
| I4 | 63 | Bachelor | Trader |
| I5 | 55 | Bachelor | Housewife |
The analysis results and verbatim transcripts found two main themes and 10 super ordinates as shown in Table 2.
TABLE 2. Theme and superordinate.
| Main theme | Superordinate |
|---|---|
| Events experienced |
|
| Psychological condition of breast cancer sufferers |
|
The five survivors shared their experiences of going through breast cancer treatment including breast cancer risk factors, signs and symptoms, as well as prevention of metastases.
According to the survivors, the possible risk factors that caused them to develop breast cancer include consumption of unhealthy foods and overeating, unhealthy lifestyles, hormonal changes in the body, family history of cancer, exposure to chemicals, and physical trauma, which can trigger cell growth cancer. Based on the interview results, the five survivors stated that they had a habit of consuming fast food containing flavor, preservatives, as well as overeating.
The process of breast cancer in the survivors began with changes in the shape of the breast and the appearance of a lump. The size of the lump varies, ranging from the size of a grain of rice, green beans, marbles, and quail eggs to the size of a chicken egg.
Breast cancer requires a long treatment therapy, thereby indirectly affecting the patient physically and economically. Side effects of treatment include changes in the patient’s physique, which are related to the impact of the treatment therapy being undertaken. The survivors revealed that their worst experience while undergoing breast cancer treatment was during chemotherapy. The side effects caused by chemotherapy include body pain and high body temperature, hair loss, dull skin, nausea, vomiting, and lack of appetite.
Breast cancer is a disease that can metasta-size to the patient’s organs. The survivors revealed that it is necessary to increase spirituality, comply with treatment regulations, consume healthy food, and share with cancer sufferers. Spirituality can be increased by getting closer to God through prayer, and being fervent in the spirit.
Heart sickness is difficult, there is no medicine that can treat ourselves. That’s why I told my friends. Prayers and enthusiasm are one package … there is prayer, there is no spirit, there is no prayer, there is spirit, it’s the same … I3
Another approach to breast cancer treatment is by maintaining the emotions of sufferers. Breast cancer sufferers undergoing treatment therapy should always think positively and make themselves happy, maintain their immune system, and be sincere. Establishing communication with fellow breast cancer sufferers is very important to exchange information and share tips on how to overcome side effects and prevent metastases. This was stated by the informant as follows:
… Even if there are heredity factors, lifestyle, 90% is from the human mind factor … but if we are always happy, hopefully, it will be safe … I3
The psychological condition of breast cancer sufferers has six subthemes, namely, rejection of the diagnosis, anger, feelings of depression, embracing the disease, self-concept, and stress.
Before undergoing medical treatment, I1 and I5 stated that they needed time to accept the diagnosis. In contrast, I3 rejected medical therapy by ignoring the breast cancer verdict due to other engagements. During the treatment, I3 experienced boredom in undergoing therapy, stating that the sight of a hospital was scary.
… Finally I went to the Dr … said Dr … this was followed up, he said … I asked my friend … he said he had to have surgery … Then Dr. A … said, do you have insurance, he said? I’m confused about what it means … finally I came a second time with my papa … finally talk to my dad … I can’t take it. I1
The survivors expressed their anger at the health workers because they thought the diagnosis and medical equipment were inaccurate. Besides, they were angry because of the required daily visit to the hospital several times for check-ups.
… that’s where I got angry … angry like this … it means that all the equipment is wasted … I5
I1 and I2 stated that they were heartbroken, afraid, depressed, and worried when they were diagnosed with breast cancer.
Broken, sis … when I was diagnosed … I immediately fainted. For about 15 minutes in penang, I passed out. After that, I feel …
yes, the common people have never heard of cancer so far. It turns out that my age will not be long, I think … I feel depressed … I feel useless … I2
In the end, the survivors expressed their acceptance of the verdict by receiving treatment therapy. I5 surrendered to God and had a strong motivation to complete all treatment processes. This is supported by I4 who also complied with the series of treatments that must be carried out.
I have no regrets … it’s been part of my life’s journey, it was all due to the struggles that happened to me, so it strengthened me. I never questioned God. I just asked God to strengthen me to live it … I just screamed at God I just cried to God … in my treatment process I also never involved anyone other than God. I don’t want to involve my husband or brothers. All I think about at that time is that I want to finish all this process and that’s what strengthens me until now, I have never regretted anything, people or even the situation … all by God’s permission … I5
Breast cancer diagnosis usually lowers a woman’s self-concept, but over time, the survivors were able to accept their condition and became independent in carrying out treatment therapy. After undergoing the therapy, the survivors finally accept themselves completely. They expressed feelings of enthusiasm and independence in undergoing treatment therapy.
… that’s why I realized that in order to fight, you can’t expect other people … fight from your heart, find the point of eagerness from your heart first … I5
Psychological stress is one of the risk factors for breast cancer; when a person is stressed, it will trigger cancer cells that already exist in the body to grow. The stress can be in the form of the habit of keeping problems to yourself, negative thinking patterns, and severe stress. Informants stated that personal stress is a factor that causes breast cancer. This is as expressed by the survivors as follows:
The third one is the high level of stress. If the stress factor is clear, because stress is a trigger factor for cancer, not only for breast cancer but for other cancers. Because in our bodies since birth, actually there are cancer cells, yes. The cancer cells already exist, only the trigger is … I3
The risk factors expressed by the five breast cancer survivors varied, but the potentially modifiable factor is lifestyle. The lifestyles reported by the survivors were eating, activity, and sleeping patterns. This is facilitated by the ease of getting ready-to-eat foods through applications on Android. The conveniences associated with this current era worsen individual activity patterns culminating in the term “lazy movement.” According to Horton and Hunt, a social group is a collection of people who are aware of their membership and interact with each other.12 This shows that the social environment, which supports each other, will negatively hinder the social development of the group.
Furthermore, the survivors confirmed that they have been using birth control pills for 20 years without regular control, breastfeeding for less than 6 months, and have a family history of cancer. Abnormal levels of the body’s prolactin hormone after pregnancy can cause various health problems, or even trigger abnormal cell growth. This is supported by Suleiman who stated that lack of breastfeeding and heredity are associated with the incidence of breast cancer.6 In contrast, Khalis et al. found that there was no significant relationship between breastfeeding children or a history of oral contraceptive use with breast cancer.4
Other factors that can trigger abnormal cell growth are exposure to chemicals and air pollution. The survivors revealed that they studied agriculture, which exposed them frequently to chemicals. This was further compounded by their location, namely, urban areas where cigarette smoke and other air pollution are unavoidable. Frequent exposure to chemicals and air pollution are risk factors for breast cancer. Chemicals have a direct effect (carcinogenic) or might require a precursor (co-carcinogenic). According to Sjamsuhidayat and Jong, benzo(a)pyrene is an environmental pollutant that comes from incomplete combustion of car engines or other machines, which are known as carcinogens in animals and humans.13
Furthermore, some survivors stated that they experienced physical trauma to the breast several months before being diagnosed with breast cancer. According to Sjamsuhidayat and Jong, physical carcinogens are a potential risk factor for breast cancer.13 Chronic irritation of the skin plays a role in the process of carcinoma carcinogenesis; hence, it can be concluded that when there is trauma to the breast chronically, it will trigger carcinogenesis of breast carcinoma. This process will gradually generate signs, symptoms, and physical changes in the breast.
Prolonged risk factors can cause symptoms of breast cancer; the survivors stated that the first sign noticed was malignancy in their breasts in the form of a lump. This occurred because of the inflammatory process that suppresses breast tissue. This process causes swelling until it finally pushes to the skin, which culminates in impaired tissue perfusion, causing ulcers or sores on the breast and discharge in the form of blood or pus from the nipple. According to the interview results, signs and symptoms expressed by the survivors preceded the definitive diagnosis of breast cancer. This is confirmed by Ryerson, Miller and Eheman, stating that breast cancer sufferers reported breast lumps, inflammation, and changes in the skin/nipples.14
Medical therapy for breast cancer starting from surgery, chemotherapy, and radiation takes 6 months, and during this period, individual compliance is needed to obey the rules of treatment. This condition needs to be ideally well understood by every patient to ensure adherence to cancer treatment therapy, especially chemotherapy.15 The government provides health insurance for breast cancer treatment, but sufferers and their families need to prepare matching funds for living expenses while undergoing therapy. This is in line with William et al., who stated that iterations of health insurance are associated with modification of medical care due to cost and the behavioral response domain of financial distress treatment options.16
Adherence to treatment as well as the consumption of healthy foods are efforts to prevent breast cancer metastases. Healthy foods are known to contain high fiber and antioxidants. High-fiber foods tend to make the stomach full, bind dirt, and detoxify toxins. Also, fibers bind bacteria in the form of butyrate and function more actively to reduce the risk of abnormal cell growth. Foods high in antioxidants prevent cancer by counteracting free radicals in the body.
The psychological condition of the survivors in dealing with breast cancer differed significantly. Based on the interview results, the survivors stated that they had gone through a difficult psychological stage. In the early stages, they refused to be diagnosed with breast cancer, felt angry and depressed until they finally accepted the disease. Kubler-Ross stated that when a person is diagnosed with a terminal illness, it will pass through the stages of Denial, Anger, Bargaining, Depression, and Acceptance.17 In the early stages, survivors expressed rejection when diagnosed with breast cancer. Ignoring the breast cancer verdict continuously can trigger depression. The level of depression in cancer sufferers at Dr. Sardjito General Hospital and Prof. Dr. Margono Soekarjo Hospital heavy at 28.58%.18 This is also experienced by cancer sufferers in the city of Medan.
The self-concept of a woman diagnosed with breast cancer is manifested on two opposite sides. The survivors experienced a decrease in self-concept at the beginning of the diagnosis, but it became positive after accepting the disease and got better after treatment therapy. At the beginning of the diagnosis, the survivors had a negative self-concept, they felt useless, ashamed, and imperfect. This is in line with Lubis and Elysabet, which stated that the side effects of chemotherapy can cause a decrease in self-concept. Low self-concept affects the anxiety of breast cancer sufferers undergoing chemotherapy.19
The stress experienced before and after being diagnosed with breast cancer plays a role in the severity of the disease. The survivors had introverted personalities; they were more likely to succumb to others and do not provide a defense when faced with difficulties or problems. This stressful condition causes a significant increase in the hormones adrenaline, cortisol, and norepinephrine. These hormones, which are found in large amounts in the body, turn off unnecessary body functions and interfere with the immune system’s response to genetic mutations in body cells. An increase in the level of the hormone cortisol will reduce the immune system, thereby causing cancer cells to multiply rapidly.
The process of treating breast cancer patients takes a long time; hence, before starting the treatment, patients should be given a thorough explanation by the doctor, especially on how chemotherapy works. Based on the results, supporting and empowering breast cancer sufferers is a struggle for caregivers and health professionals.
The author is grateful to the promoters and co-promoters for their warm support, inspiration, and guidance. The author also appreciates the Widya Fraliska Foundation for providing full financial support, as well as the community health center staff for providing free time to support this study.
1. American Cancer Society (ACS). 2014. Global Cancer Facts & Figures 2nd Edition. http://www.breastcancer.org/symptoms/understand_bc/statistics
2. Riskesdas. Hasil Utama Riskesdas 2018 Kementrian Kesehatan Republik Indonesia. Kemenkes RI; Jakarta, Indonesia, 2018, pp. 1–100.
3. Hassan EE, Seedhom AE, Mahfouz EM. Awareness about breast cancer and its screening among rural Egyptian women, Minia district: A population-based study. Asian Pac J Cancer Prevent. 2017; 18(6): 1623–1628. 10.22034/APJCP.2017.18.6.1623
4. Khalis Charbotel, Chajes, et al. Menstrual and reproductive factors and risk of breast cancer: a case-control study in the Fez region, Morocco. PLoS One. 2018; 13(1): 1–13. 10.1371/journal.pone.0191333
5. Kulkarni BB, et al. Decade of breast cancer-trends in sufferers profiles attending tertiary cancer care center in South India. Asian J Epidemiol. 2012; 5(4): 103–113. 10.3923/aje.2012.103.113
6. Suleiman A. Awareness and attitudes regarding breast cancer and breast self-examination among female Jordanian students. J Basic Clin Pharm. 2014; 5(3): 74. 10.4103/0976-0105.139730
7. Khushalani JS, et al. Awareness of breast cancer risk related to a positive family history and alcohol consumption among women aged 15–44 years in United States. Prevent Med Rep. 2020; 17: 101029. 10.1016/j.pmedr.2019.101029
8. Dura-Ferrandis, Mandelbatt, Clapp, et al. Personality, coping, and social support as predictors of long-term quality-of-life trajectories in older breast cancer survivors CALGB protocol 369901 (Alliance). Psycho-Oncology. 2017. 26 (11). 1914-1921. https://onlinelibrary.wiley.com/doi/epdf/ 10.1002/pon.4404
9. Jose R, et al. Empowering the community for early detection of cancer: a rural community intervention programme in Kerala, India. Int Surg J. 2014; 1(1): 17. 10.5455/2349-2902.isj20140506
10. Taleghani F, et al. Empowerment needs of women with breast cancer: a qualitative study. Iran Red Crescent Med J. 2014; 16(11): 30–35. 10.5812/ircmj.16379
11. Fayanju OM, et al. Value-based breast cancer care: a multidisciplinary approach for defining patient-centered outcomes. Ann Surg Oncol. 2016; 23(8): 2385–2390. 10.1245/s10434-016-5184-5
12. Khotimah FN. Sosiologi: Kelompok Sosial. Kementerian Pendidikan dan Kebudayaan; 2018, p. 56.
13. Sjamsuhidajat R, and Jong DW. Buku Ajar Ilmu Bedah: Sistem Organ dan Tindak Bedahnya. EGC. Jakarta; 2017.
14. Ryerson AB, Miller J, and Eheman CR. Reported breast symptoms in the National Breast and Cervical Cancer Early Detection Program. Cancer Causes Contr. 2015; 26(5): 733–740. 10.1007/s10552-015-0544-1
15. Halimatussakdiah H, and Junardi J. Faktor Risiko Kepatuhan Kemoterapi pada Pasien Kanker Payudara. J Kesehatan. 2017; VIII(3): 415–424. 10.26630/jk.v8i3.654
16. Williams CP, et al. Health insurance literacy and financial hardship in women living with meta-static breast cancer. JCO Oncol Pract. 2020; 16(6): e529-e537. 10.1200/jop.19.00563
17. Kubler-Ross, Elisabeth dan David Kessler. On Grief And Grieving: Finding The Meaning Of Grief Through The Five Stages Of Loss. New York: Scribner-Simon & Schuster Inc. 2005.
18. Widiyono S, Setiyarini S, and Effendy C. Tingkat Depresi pada Pasien Kanker di RSUP Dr. Sardjito, Yogyakarta, dan RSUD Prof. Dr. Margono Soekarjo, Purwokerto: Pilot Study, Indones J Cancer. 2018; 11(4): 171. 10.33371/ijoc.v11i4.535
19. Lubis NL, and Elysabet M. The correlation of self-conception of the women affected by breast cancer experiencing anxiety due to chemotherapy treatment in Dr. Pirngadi Regional General Hospital, Medan. 2017; 81(Icosop 2016): 174–179. 10.2991/icosop-16.2017.25
20. Kim BH, et al. Social networks and physical activity behaviors among cancer survivors: data from the 2005 health information national trends survey. J Health Commun. 2015; 20(6): 656–662. 10.1080/10810730.2015.1018576
21. Kroenke CH. A conceptual model of social networks and mechanisms of cancer mortality, and potential strategies to improve survival. Transl Behav Med. 2018; 8(4): 629–642. 10.1093/tbm/ibx061