A total of 25 interviews were conducted. This number was achieved after ensuring data saturation. Subjects consisted of three breast cancer patients, three breast cancer patients’ relatives, eleven HCPs from both public and private health care facilities and from all levels of care (i.e. general practitioner, oncologist, oncology surgeon, radiologist, radiation oncologist, nurse, lay helper), two stakeholders from an authority and managerial perspective (i.e. health district office representative, hospital director) and five healthy women from the general community (woman from general community). The interview results are presented thematically in Figure 1 and narrative as follows:
3.1 Knowledge and perception towards breast cancer’s early detection
3.1.1 Misperception about screening program
“I did not know that screening is done for people without symptoms.” (woman from general community)
“I did not know that breast cancer can be asymptomatic and that there is a tool for detecting it.” (breast cancer patient’s relative)
“I thought mammography is used for women with a breast lump only.” (breast cancer patient)
Although most of the women from the general community had heard about the existence of and the term ‘screening’, none of them knew that screening is aimed at detecting a disease even before any symptoms have appeared. Most female subjects (except HCPs) did not know that mammography can be used for screening before symptoms emerge. They thought that this examination was used for women with a breast lump only.
As for the relatives of the breast cancer patients, they also did not know that they could do regular screening. These women also thought that if they did a screening, it was sufficient to have it once only, particularly for mammography. When the result was negative they believed that it meant they were in a healthy condition forever, so they deemed it unnecessary to retake it regularly.
3.1.2 BSE is more popular than CBE and mammography
“Yes, I have heard about breast self-examination from many health promotions, but I have not heard about CBE nor mammography” (women from general community)
When the women from the general community were asked about what screening method they knew, they confirmed to be familiar with BSE as a screening method rather than CBE and mammography. According to the HCPs, BSE, locally known as sadari (pemeriksaan payudara sendiri), was the only early detection program for breast cancer, which was promoted regularly by the government. After being informed by the interviewers about additional options for breast cancer screening (i.e. BSE, CBE, and mammography), most participants still preferred to conduct BSE because it was simple and free. However, several participants stated that many women were uncertain towards their findings, whether they truly felt a lump or something else.
CBE, locally known as sadanis (pemeriksaan payudara klinis), was the least popular early detection program. None of the participants had CBE for screening (in asymptomatic condition). However, participants with breast cancer had CBE as part of their early diagnostic process. Among them, only one breast cancer patient knew mammography as screening tool, whereas the other two patients knew mammography as a part of the diagnostic process, not as a screening tool. The women from the general community and the breast cancer patients’ relatives had no knowledge of, nor experience with mammography as a screening tool. Their lack of knowledge about CBE and mammography may have impacted their preference for either screening method.
3.2 Breast cancer patients’ experience in dealing with early detection
3.2.1 CBE is challenging since patients visit a doctor only for significant breast lumps.
“Nine years ago, I felt a lump as big as a marble in my upper left breast near the armpit, but I ignored it. Then, in 2012 I felt the pain in my left arm, and I palpate this area until found another lump near the axis of my body as big as a chicken egg. After telling my husband, we agreed to consult to the doctor” (Breast cancer patient)
“In July 2012, I felt a lump as big as a marble in my left breast when I was taking a bath, but I ignored it and assumed it as “uci-uci” (benign nodule). After a while, my husband felt a lump in my breast and suggested me to go to the doctor.” (Breast cancer patient)
All breast cancer patients said when they first felt a breast lump, they ignored it. They did not think of it as a serious problem that needed to be consulted immediately with a doctor. Most of the HCPs made a similar statement. One HCP specified that many patients waited until the symptoms they had were severe enough before seeking medical help. They would consider it severe if they were worried about the size of the lump or if the lumps were painful or limiting their usual activity Our patient subjects went to the doctor after being pushed by their family members.
In Indonesia, a woman’s breast is perceived as a sensitive part of the body, so it can be considered shameful to talk about breast conditions with other people. It is also taboo to let males touch this body part (i.e. doctors’ examination), particularly when they feel there is no abnormality in the breast. Two women from the general community revealed that they would need to ask for their husbands’ permission before a male doctor could examine their breasts.
3.2.2 Lack of mammography access
“Mammography screening is not covered by BPJS Kesehatan, whereas diagnostic mammography is covered in selected facilities” (Oncologist)
One HCP (radiologist) mentioned that as Indonesia is a low-middle income country, it has limited resources in conducting mammography. In the Yogyakarta Province with 4 million inhabitant (14), there are only seven mammography facilities, all of which are in the city center making access difficult especially by patients from the peripheral areas. Mammography screening is not covered by BPJS Kesehatan in any health care facility, but diagnostic mammography is covered in selected facilities.
One of the HCPs told her story of working in a private hospital. When she had a patient with a breast lump who was going to undergo a diagnostic procedure with mammography, she could not do it in that private hospital because mammography was not available. Then, she would like to send her patient to a private laboratory with mammography facilities in front of the hospital, but she failed. This happened because BPJS Kesehatan covered diagnostic mammography only in selected health facilities, not including that private laboratory. In the end, she decided to use ultrasound for diagnosing her patient, instead of mammography.
3.3. Health care system with regards to breast cancer’s early detection
3.3.1 Lack of an appropriate diagnostic procedure in the first level of care
“When a patient comes with a breast lump, I will conduct a physical examination. If I suspect the lesion as malignant, I will refer the patient to the district hospital” (General Practitioner)
A general practitioner mentioned that he usually conducts a physical examination to check if the breast lump is suspected to be malignant or benign. If it is, he would refer the patient to a higher-level health care facility. It is not possible though to refer the patient directly to a specialized oncology team available in a third level hospital. Instead, he should refer the patient to a second level hospital. However, if the breast lump was suspected to be benign, he would not offer any referral to the patient.
This kind of practice by general practitioners was often criticized by other HCPs. A radiologist and an internist said that it may cause under-diagnosis of breast cancer because physical examination cannot decide malignancy; it must be diagnosed with a triple diagnostic procedure: physical, radiology, and pathology examinations. Since radiology examination is not offered in first-level healthcare, patients should be referred to a higher-level facility. If the radiology examination indicated the lump to be malignant, a patient should have a fine needle aspiration biopsy (FNAB) for pathology examination to reach a conclusive diagnosis
3.3.2 Challenges of diagnostic procedure in the second level of care
“Most times, the surgery procedure for women with a breast lump in a secondary hospital is done with a diagnostic purpose, which we do not recommend” (Oncology Surgeon)
A lack of resources was found regarding the availability of pathologists in the second level hospitals. The HCP (oncology surgeon) stated that, in the Yogyakarta Province, only a few second-level hospitals have a pathologist in place. Thus, a surgeon would have to send the specimens to higher level hospitals to obtain a definitive diagnosis of a patient suspected with breast cancer. This process is time-consuming, so patients must wait longer to find out about their condition and receive treatment.
Furthermore, according to oncology doctors in the third level of care (i.e. oncology surgeon, radiologist), they received referral patients from the second level of care who had undergone surgery in the second level of care. They mentioned that many of those breast surgeries were done without the standardized triple diagnosis. In fact, the surgery itself was performed to confirm the diagnosis. This practice had disadvantaged patients due to an invasive and potentially unnecessary procedure because definitive diagnosis could be achieved through less invasive procedures.
The oncology surgeon also said that approximately 70-80% of those referral patients had undergone surgery in the second level of care without using the standard procedures. For example, they did not conduct lymph node removal in which ideally lumps removed must include parts of nearby lymph nodes that potentially also contain cancer cells. The reason why this surgeon in the second level of care did not conduct standardized procedures could be the lack of mammography facilities and pathologists.
One HCP said that a doctor in the second level of care could make a referral to the third level of care for a diagnostic mammography. However, in most cases, they were reluctant to do so due to a long procedure (i.e. administrative and waiting time) that the patients should take. So, the doctor finally used ultrasound only as this is the available imaging modality in the second level of care. However, she added that both mammography and ultrasound ideally should be used together for breast cancer diagnosis.
3.3.3 More patients with earlier stages present in third level of care after BPJS Kesehatan implementation
“After BPJS Kesehatan implementation, we have an increased number of breast cancer patients in the tertiary hospital” (General practitioner in Oncology Wards)
One HCP mentioned that BPJS Kesehatan helped low-income patients to afford the high cost of diagnostic and treatment procedures. One HCP, who worked in a tertiary hospital, said that there is an increase in the number of breast cancer patients treated in her hospital. Furthermore, there was a shift in the breast cancer pattern after BPJS Kesehatan implementation. Three HCPs indicated there were more breast cancer patients who present earlier to the tertiary level hospitals, resulting in an improvement of the treatment process and patients’ prognosis. Unfortunately, this rising number of breast cancer patients is not yet supported by adequate resources, such as enough specialist doctors in the oncology department.