Background
Methods
Sampling design
Ethni-city | Malay (n = 18) | Indian (n = 18) | Chinese (n = 18) | |||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Breast Cancer Stage | Early Stage Cancer (Stage I & II) | Advanced Stage Cancer (Stage III & IV) | Early Stage Cancer (Stage I & II) | Advanced Stage Cancer (Stage III & IV) | Early Stage Cancer (Stage I & II) | Advanced Stage Cancer (Stage III & IV) | ||||||||||||
Age (years) | < 40 | 40–60 | > 60 | < 40 | 40–60 | > 60 | < 40 | 40–60 | > 60 | < 40 | 40–60 | > 60 | < 40 | 40–60 | > 60 | < 40 | 40–60 | > 60 |
No. to recruit | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 3 |
Recruitment
Data collection: interview guide and interviewing process
Coding and analysis
Results
Characteristics of participants | N = 36 | |
---|---|---|
Ethnicity | Chinese | 17 |
Malay | 12 | |
Indian | 7 | |
Marital status | Married | 22 |
Widowed | 2 | |
Divorced/Separated | 0 | |
Single | 7 | |
Age groups | < 40 years old | 7 |
40–49 | 10 | |
50–59 | 5 | |
60–69 | 11 | |
≥70 | 3 | |
Stages of cancer at diagnosis | Early stages | |
Stage 1 | 9 | |
Stage II | 11 | |
Advanced stages | ||
Stage III | 13 | |
Stage IV | 3 | |
Tumour size (TNM classification) | T1 (<= 2 cm) | 9 |
T2 (> 2 cm but < 5 cm) | 21 | |
T3 (> 5 cm, no extension to chest wall) | 4 | |
T4 (any size with extension to chest wall and/or skin) | 2 |
Presentation of breast cancer symptoms by ethnicity, age and stage of cancer
Ethnicity | Stage of cancer (n) | Stage of cancer | Age group | Symptom(s) |
---|---|---|---|---|
CHINESE | Early stages (8) | I | < 40 | Lump under armpit |
I | 40–49 | Lump | ||
I | 50–59 | Lump | ||
I | 60–69 | Lump | ||
II | < 40 | Lump | ||
II | 40–49 | Lump | ||
II | 60–69 | Lump | ||
II | 60–69 | Lump | ||
Advanced Stages (9) | III | < 40 | Lump | |
III | < 40 | Lump, bean size | ||
III | 40–49 | Lump, hardness in breast, | ||
III | 50–59 | Lump | ||
III | 60–69 | Tightness, prickly/stinging pain and later found a lump | ||
III | 60–69 | Lump | ||
III | 60–69 | Lump (bony) | ||
IV | 60–69 | Protruding grape size lump | ||
IV | < 40 | Hard lump, until it grew bigger | ||
MALAY | Early Stages (7) | I | < 40 | Lump |
I | 40–49 | Lump | ||
I | 40–49 | Lump | ||
II | < 40 | Protruding lump on left nipple. | ||
II | 50–59 | Lump | ||
II | 50–59 | Lump | ||
II | 60–69 | A boil of the size of a cherry on the breast | ||
Advanced stages (5) | III | 40–49 | Protruding lump | |
III | 40–49 | Mammography positive result | ||
III | 50–59 | Lump that was painful | ||
III | 60–69 | One breast bigger and red. | ||
III | ≥70 | Painful lump | ||
INDIAN | Early Stages (5) | I | 40–49 | Had an intuition and went to clinic, Doctor didn’t find lump, she insisted then after 3rd check, lump was found. |
I | 60–69 | Lump (20 cent coin size) | ||
II | 40–49 | Pain in breast | ||
II | ≥70 | Swelling lump | ||
II | ≥70 | Tiny lump, | ||
Advanced Stages (2) | III | 40–49 | Pain in breast | |
IV | 60–69 | Inverted nipple, skin ‘pocket’, sometimes got lump |
Presentation by time delay and cancer stage
Ethnicity | Stage of cancer | Stage of cancer | Age (years old) | Time delay |
---|---|---|---|---|
CHINESE | Early Stages | I | < 40 | 1 day |
I | 40–49 | 1 month | ||
I | 50–59 | Clinic visit | ||
I | 60–69 | 1 day | ||
II | < 40 | 1 month | ||
II | 40–49 | Breast self- examination (BSE), immediate | ||
II | 60–69 | 6 month | ||
II | 60–69 | 1 day | ||
Advanced stages | III | < 40 | 1 week | |
III | < 40 | 1 month | ||
III | 40–49 | 1 year | ||
III | 50–59 | A few days | ||
III | 60–69 | 7 months | ||
III | 60–69 | BSE, immediate | ||
III | 60–69 | 1 year | ||
IV | 60–69 | 2 months | ||
IV | < 40 | 2 months | ||
MALAY | Early stages | I | < 40 | 1 day |
I | 40–49 | 1 month | ||
I | 40–49 | Mammogram | ||
II | < 40 | 1 day | ||
II | 50–59 | 3 months | ||
II | 50–59 | Medical check up | ||
II | 6069 | 5 months | ||
Advanced stages | III | 40–49 | 1 year | |
III | 40–49 | Mammography | ||
III | 50–59 | 5 months | ||
III | 60–69 | Hospital admission for other illness/symptom | ||
III | ≥70 | 1 year | ||
INDIAN | Early stages | I | 40–49 | immediate |
I | 60–69 | 1 month | ||
II | 40–49 | 1 day | ||
II | ≥70 | 6 months | ||
II | ≥70 | 2 months | ||
Advanced stages | III | 40–49 | A few days | |
IV | 60–69 | 7 months |
Patients’ attitudes and experiences in their cancer journey
A) Help seeking attitudes and behaviour for breast cancer symptom(s)
Awareness and knowledge of breast cancer
‘I only understood it after I was diagnosed with it’ (40–49 year old Chinese female with Stage III cancer).
‘I have no understanding of cancer as I never thought that I would be diagnosed with it … so I never bothered to understand it (breast cancer).’ (40–49 year old Chinese female with low educational qualifications, Stage II cancer).
‘Very poisonous. I read the news that when you find out … it will spread. If you don’t seek treatment … it is scary and I don’t dare to think or care about it.’ (60–69 year old Chinese female, Stage II cancer).
‘Actually I was shocked also, you know … yeah. Didn’t know it can happen to me also … ’ (50–59 years old Chinese, Stage I cancer).
‘It’s not life or death, I thought it was natural (to have a breast mass), I was able to do things (and look after the children).’ (50–59 year old Chinese nanny with stage III cancer).
‘When I felt there was something, because it was on the bone portion, I thought it was more the bone than the lump’ (60–69 year old Chinese female with stage III cancer).
‘Normally I don’t massage my own breasts because I don’t have big breasts (it should be obvious if there is a lump)’ (60–69 year old Chinese property agent with stage IV cancer and a 4.5 cm breast lump).
‘I try to check my breasts every day. That day, I noticed something was inside so I knew there was no need to wait, I went to the polyclinic for a check’ (< 40 year old Malay female with stage I cancer).
‘ … I raised it (breasts) up to feel, lower it to feel and compare their sizes. Then I realized something was not right, the right one seems to have shrunk and the breasts have become uneven. When you put it down you will know whether they are of the same size. It seems weird today, something is not right. I have not looked at them for two months as I was very busy and suddenly I thought … die. This time I got it’ (60–69 year old Chinese female with stage II cancer).
‘I did not notice a lump but I had (breast) pain and went to the polyclinic. They told me I had a large lump and sent me to NUH (National University Hospital)’ (40–49 year old Indian female with stage III cancer).
‘I know how to check, but I never checked (my breasts)’ (40–49 year old Indian female with stage III cancer).
Misinformation
‘I learnt how to examine my breasts from a television program. I thought that if I had a lump, the shape will definitely change … and this is true’ (60–69 year old Chinese with Stage II cancer).
‘I went online and searched for some information. It said that if it could move, it might be benign.’ (< 40 year old Chinese graduate with Stage III cancer).
‘One day I was reading a magazine about this Malay lady being diagnosed with cancer and the symptoms of it. One of them was having a lump beneath the armpits. Then I happen to have a lump beneath my armpits … Singapore had this Pink Ribbon event organized by the Breast Cancer Awareness Society, giving us some information’ (< 40 year old Chinese graduate with Stage I cancer).
My mother had a benign lump before, she did not remove it and it recovered on its own. So she told me that mine might be the same. I trust my mother’s words so I did not seek treatment immediately. About a week later, I pondered about it and felt the lump (< 40 year old Chinese graduate with Stage III cancer).
Diet and stress
‘When you talk about causes (of breast cancer) … I have heard that I have to eat healthy … for 10 years I did not eat McDonalds, or any fried food, I don’t even know how to order food at those restaurants … ’ (60–69 year old Chinese with stage III cancer).
‘ … Sometimes what we eat, consume, plays a part’ (50–59 year old Malay retail assistant with recurrent stage II cancer).
‘What causes it? Could be stress, could be your food. I mean those kinds of things and many different factors’ (40–49 year old Chinese Librarian with stage I cancer).
Family history of breast cancer
‘What we understand is that cancer is related to (family) history and genes right? So … so that’s why everybody just ignored, and never went for check-up … because we believed that we were safe since our family does not have any history of this (breast cancer)’. (50–59 year old Malay female with recurrent stage II cancer).
‘I didn’t even know that one could contract this illness if there was no history of cancer in the family’ (40–49 year old Chinese female with low educational qualifications and stage II cancer).
‘The weird thing is, none of them (parents) have this, they have diabetes, I don’t understand why I got this’ (60–69 year old Chinese administrator with Stage III cancer).
Fatality of breast cancer
‘Feels like once you get it, you will die from it’ (< 40 year old Chinese unemployed with stage II cancer).
‘ … But this sort of illness, to me, this kind of illness is very scary. Even in its early stages, it is difficult to be cured.’ (60–69 year old Chinese accountant with stage II cancer).
‘My understanding is it could be fatal, it means it could be quite life threatening. It is treatable, but it is not, there is no warranty of cure once you have cancer, any kind of cancer, inclusive of my breast cancer.’ (60–69 year old Chinese property agent with stage IV cancer).
Breast cancer screening
‘I did not want to go for mammograms because it is painful’ (50–59 year old Chinese nanny with stage III cancer).
Caring duties
‘I did not dare tell my family. I tell myself not to bother (them). All the chemotherapy and radiotherapy are troublesome and I would still die after (the treatment)’ (60–69 year old Chinese female with stage I cancer).
‘I knew about it last year, but I kept quiet. I have to look after my husband – his cataracts (before I go and see the doctor)’ (50–59 year old Malay housewife with stage III cancer).
‘If I went for surgery (5 years ago when I was still a nanny), nobody will look after the child, things would be difficult for the mother.’ (50–59 year old Chinese nanny with stage III cancer).
Fear
‘I realized there was something wrong (about 6 months ago), but I did not check up immediately, I dragged it out for about 3 to 4 months … I was afraid, what if it is a malignant tumour? Actually I always hear from others that it should be during the early stages when you are detected … but this sort of illness, to me, this kind of illness is very scary.’ (60–69 year old Chinese accountant with stage II cancer).
‘I know that I got (cancer), and I have to go to the hospital. I was already scared, so I postponed to see doctor, I delayed and delayed, and then I realized … I don’t know where to go, I cannot find out how to cure this sickness, so finally I come here (hospital)’ (40–49 year old Malay female with stage III cancer).
‘ … knew it could be cancer, tried to dismiss the idea away because all her life she has never been to the hospital’ (60–69 year old Malay female with stage III cancer).
Patient’s personality
‘On one hand I was very scared I would die … but I thought that the most important thing would be to heal myself first’ (40–49 year old Chinese female with low educational qualifications and stage II cancer).
‘I panicked, thinking if this could be cancer … I tried to remain calm and immediately went to the clinic’ (60–69 year old well-read Chinese female with stage III cancer).
‘After you find a (breast) lump, be it good or bad, you should accept it and seek treatment immediately’ (60–69 year old Chinese accountant with stage II cancer).
Fear of dying in the hospital
‘ … I would die there (hospital). I could tell my son, I kept this secret until it was too painful … ’ (over 70 year old, Malay, Stage III cancer).
‘I might die in the hospital if I go there’ (over 70 year old, Malay, Stage II cancer).
Traditional and alternative medicine
‘I decided to wait and see, I was doing some alternative treatments, diet, exercise and you know, good healthy lifestyle. I stopped taking sweets and meat … ’ (60–69 year old Indian Housewife with stage IV cancer).
‘I went to the traditional Chinese medicine doctor first (after being diagnosed at the polyclinic)’.(< 40 year old Chinese graduate with stage IV cancer)
‘ … I’m now looking for a traditional and alternative medicine to improve my health, as there are many side effects after chemotherapy, like cough. After my second chemotherapy, I had a cough and it did not recover for two months. After that I went to see a TCM until now.’ (< 40 year old, Chinese, Stage III cancer).
Financial burden
I really did not want to see the doctor when I found the lump. The treatment cost is expensive in Singapore. I have Medisave and my son also has saving. But it would be a lot of money. I waited and hope it would go away. When I finally had treatment, they told me I am qualified for government subsidy, I have no knowledge of this subsidy. Now I am in the clinical trial. (60–69 year old, Chinese, Stage II cancer).
‘I thought of seeing the family doctor but that would be expensive. How much is one (referral) letter? Better not. Let’s go poly (clinic).’ (60–69 year old, Chinese, Stage II cancer).
‘If you fail your medical check-up, they (the employer) will terminate you, so I wanted to check after I got the job’ (50–59 year old, Malay, Stage II cancer).
Family support
‘Initially I told my children not to bother about it, but later I thought about it and I think it is better to see a doctor as my grandchildren are so young and cute, and I cannot bear to leave them. She (my daughter) said “Mum, I will take the day off and bring you”.’ (60–69 years old, Chinese, Stage I cancer).
‘I had the symptom, a lump, for a while. I found it while I was holidaying in Indian. Then I visited my son in the US and told him. He scolded me and told me to see the doctor immediately. I came back to Singapore and went to the doctor’ (60–69 year old, Indian, Stage IV cancer).
B) Patients’ experience after diagnosis and during treatment.
Acceptance of cancer
‘There’s nothing much. If I have to face the later stages of (cancer) that cannot be treated and will lead to death, there’s nothing we can grumble about. To put it plainly, if your time is up … you have to take care of yourself. Such problems cannot be prevented.’ (60–69 year old, Chinese, Stage I cancer).
‘ … I was struggling the past few months, therefore I was mentally prepared when the doctor confirmed the diagnosis. I was mentally prepared before visiting the polyclinic and accept … hence when I knew the truth I just accepted it.’ (60–69 year old, Chinese, Stage II cancer).
‘My children cried and I asked what’s there to cry about? I said people live and die. I was calm when the doctor told me (about the diagnosis) too.’ (60–69 year old, Chinese, Stage III cancer).
‘On the day of surgery, when I was on the surgery operating theatre’s bed, I cried because I was thinking why I am so unlucky that this is happening to me. I’m not afraid of death or what … just sighing that I am so unlucky to have this.’ (60–69 year old, Chinese, Stage I cancer).
‘I was shocked. After that I broke down and cried. I couldn’t accept it.’ (< 40 year old, Chinese, Stage III cancer).
Anxiety over treatment cost
‘A clinic visit costs over a hundred over dollars every time... Consultation costs about $30, scans are at least a hundred dollars, what about the weekly blood tests if you go on chemotherapy. You have to pay by cash. Therefore people say Singaporeans can die but not fall sick.’ (60–69 year old, Chinese, Stage III cancer).
‘I don’t want to burden my family. … my parents were very sickly … I have eight siblings and we couldn’t afford their medical bills. We were not educated and we earn about $1-2000 monthly, how is that even enough to support our own family. … after my parents passed on, its like a piece of shattered glass … I have seen my parents’ condition and I don’t want to burden my children. It is a hundred over dollars every time. You can imagine how much it costs when I visit these three places, What about weekly blood test? It costs $30 every time I see the doctor..’ (40–49 year old, Malay, Stage I cancer).
Indecision about post-surgery care
‘Day one, you want. Day two, you don’t want. Day three, you want. It’s a lot of back and forth and a lot of opinions from people that influence you to see whether you should. … Why do another surgery to get … your breast back. … started looking the health effects, the cost, the long term effects. Especially if let’s say, the surgeon did suggest that I do an implant, rather than a tissue grafting. Then you start looking on internet and check, whether it is okay and the long term effects. After weighing all the health … potential health risk, potential financial cost, and all these things. I felt that it would, I’m not keen on the tissue grafting, and I feel like it is two major surgeries. I already have one big one (surgery), I don’t want another one, so that is sort of out. So I’m left with either implant or with don’t have any reconstruction. Implant was one of the potential problems that comes with it, it’s going to last ten, fifteen year, but who knows, it may not last ten or longer or maybe shorter then you have more problem. So looking at the cost (and) financial problems, what I want to do from now on, so I felt that maybe it’s not necessary after all. Although at one stage, I felt that I need it’ (40–49 year old, Chinese, Stage I cancer).
Diet and stress
‘More concerned about whether any kinds of food could be the cause … I gave up seafood except fish … I still eat chicken because I believe chicken is white meat, … I changed my eating habits by taking more fruits. I am also of the opinion that cancer patients like me are not disciplined. I think it’s about discipline with food.’ (60–69 year old, Chinese, Stage IV cancer).
‘But now I understand that cancer could be due to stress, the environment and food’ (< 40 year old, Chinese,Stage III cancer).
‘Even now with the relapse, it could also be due to stress, due to my work, like last time. So now I just want to think less and not put too much pressure on myself’ (50–59 year old, Malay,Stage II recurrent breast cancer).
Traditional and complementary medicine
‘I went to the doctor at the polyclinic and was diagnosed with the cancer, then I went to see a traditional healer. He said he will heal me. After 1 month, nothing happened, I came to the hospital and they said I have to do chemotherapy … ’ (< 40 year old, Chinese, Stage IV cancer).
‘Actually I’m now looking for a TCM to improve my health, as there are many side effects after chemotherapy, like cough. After my second chemotherapy, I had a cough and it did not recover for two months. After that I went to see a TCM until now.’ (< 40 year old, Chinese, Stage III cancer).
Recalling the efficiency of the breast cancer healthcare and referral system
‘… Sometimes the patient might not follow up actively. But the hospital should have some form of follow up, like sending a letter to advise the patient to return to the hospital for a check-up and not wait for a normal check up every two years. (60–69 year old, Chinese, Stage II cancer).
‘When I was about to go home, they called to inform me that there is an available slot on the same day, So I went to the hospital immediately and did all the necessary procedures.’ (60–69 year old, Chinese, Stage III cancer).
‘I went to a clinic and the (doctor) told me it is (cancer). He helped me make a call immediately, he called up NUH and he said I could have (an appointment) in a week.’ (60–69 year old, Chinese, Stage III cancer).
‘Polyclinic is the best, they do a check-up for you and look for the relevant doctors … he immediately called the (specialist) hospital when he felt something was wrong … getting an appointment through them is very fast and cheap … you know a family doctor will take 2 to 3 weeks and would be expensive. I saw the doctor at 11 am that day and he made me an appointment at 3 pm on the same day’ (60–69 year old, Chinese, Stage II cancer).
‘I called to make an appointment for the scan (mammogram), but the staff asked me if I had a lump, and recommended me to go to see the doctor immediately instead’ (60–69 year old, Chinese, Stage III cancer).
Prayers to god
‘From my viewpoint of as Christian, god can still heal through medical means, through doctors or whatever. He can always do it, like using healing, that sort of things’ (40–49 year old, Chinese, Stage I cancer).
‘Well, of course prayer, prayer has always been part of my life. So I believe God heals. But I think at the same time, God provides the doctors and I think God created all plants and animals for food. So I believe plant based there are many extracts used in medicine these days. I think Soursop is one of the known plants’ (40–49 year old, Indian, Stage I cancer).
Support network
‘I don’t know what to do; my sister replied everything for me. She did everything for me; I didn’t know what to do’. (< 40 years old, Chinese, Stage IV cancer).
‘We went home and discussed this (treatment) method with our children, after all our children already grown up, so we just discussed. I did not want to wait any more longer, so we decided to go on with the surgery because it’s only at the early stage. We don’t need to let it worsen, so that’s why as early as possible, we get it out.’ (40–49 year old, Malay, Stage I cancer).
‘Even though I am a widow, I have both my children, they are very supportive, I went (to the specialist) with my daughter’ (Over 70 year old, Indian, Stage II cancer).
‘My husband was with me at the point where they talked about the results from the biopsy, so he was the first person to know. He cried.’ (40–49 year old, Indian, Stage I cancer).
‘My friend was present when I received my diagnosis. We cried together. I went home and told my family. My mother and the rest were sad, my father cried as well. They don’t really believe it and asked me to do another test.’ (< 40 year old, Chinese, Stage III cancer).