During the analysis, three categories were identified: beliefs of the causes of cancer, self-belief of the effectiveness of conventional therapies for cancer treatment and personal self-belief and experiences regarding conventional medicines' adverse effects.
Beliefs regarding the causes of cancer
When asked about why people get cancer and the reasons for getting cancers, cancer patients gave different reasons according to the following sub themes: unknown reasons, internal and external factors and spiritual attributions.
Unknown Reasons
In this preliminary investigation, cancer patients described cancer as a disease present in every human being that may become visible during the course of life.
"Initially I thought cancer is a kind of sickness, that only fat people can get, but now when I came to the wards I noticed even thin people also get cancer. What I believe is everyone got cancer but it is not explored yet" [P1-Nasopharyngeal carcinoma].
Patients reported cancer as a disease, which has no geographical or racial boundaries.
"Anybody can get cancer. There is no way that you can control cancer, irrespective of age, race, diet, exercise... anyone can be a suitable candidate of cancer, except you have some ways to stop the normal cells to be converted into a cancerous cell"[P12-Colon cancer].
Internal factors
Haematological imbalances and genetic predispositions were some of the internal factors reported by the cancer patients. Patients with a family history of cancer strongly believed cancer to be a genetic disease.
"It happens due to the imbalance of the blood cells"[ P6-Colon cancer].
"Cancer is related to family history........ right? My mother passed away due to stomach cancer. Cancer doesn't discriminate. I have inherited the cancer from my mother" [P16- Cervical cancer].
For those with a family history of cancer, additional inquiries were made to evaluate the perceived susceptibility to cancer.
"Yes, my father at the age of 63, and my younger sister at the age of 20 years died of stomach cancer, but I never thought of getting cancer, because I was healthy all the time" [P6-Colon cancer].
External factors
Unhealthy lifestyle habits such as smoking, lack of exercise and the presence of pesticides in food were some of the environmental factors believed to contribute to cancer.
"You know the food you take may be you will get the cancer, because now the food you know, they put what? (what to say ... supplements... no no), ya... pesticides they put on the vegetables, I think that is the main cause of cancer'' [P9-Colon cancer].
"I was a heavy smoker and I use to smoke 20 cigarettes per day. I think my smoking habit must be one of the reasons I got cancer" [P3-Colon Cancer].
Interestingly, some of the colon cancer patients related cancer to their eating habits containing such ingredients as spicy food and red meat.
"May be if we eat spicy food the seeds of chilli may stuck in the stomach and may cause cancer" [P3-Colon Cancer].
However, patients with eating habits that consisted of less spicy food and who also claimed to have a healthy lifestyle, such as regular exercise or a vegetarian diet, rejected the idea of an unhealthy lifestyle as a cause of cancer.
"I don't think so, if that is the case, I think Malay and Indians should get more colon cancer, because they eat more spicy food than Chinese'' [P14-Colon cancer].
"To me, defining healthy and unhealthy lifestyle is a big problem, what do you mean by healthy lifestyle? A person who never did exercise, just have a normal daily routine work and then sleeping can stay very long also. Diet also what I eat my wife also eat the same, but I got (cancer) she did not" [P12-Colon cancer].
Spiritual attribution
Although the majority of the patients gave different reasons and theories to the cause of their cancer, a strong spiritual connection was found as all patients described their cancer diagnosis as God's will.
"Everyone will have to face it (death) regardless of where they are. No one can escape. That's actually our luck. If it has stated we ended our life with this kind of disease, we need to accept the destiny" [P17-Cervical cancer].
In addition, spirituality was mentioned as one of the ways to control the emotions that can assist in boosting the immune system and increasing their chances of a cure.
"Cancer is a mental disease rather than a physical. Spiritually, if you can control your emotions, your survivor rate is good. It is just when you are down emotionally, then it will affect your immune system, it will drop" [P12-Colon cancer].
It was found that patients tend to be more enthusiastic in learning about their disease and trying to find probable reasons for having the disease, particularly relating it to their lifestyle habits and family history. However, it is also noted that patients, despite having a strong family history of cancer, never considered cancer screening prior to their diagnosis. Most of the patients showed a willingness to ask their close family members to go for regular health screenings. Despite differing expectations on their possible cure almost all patients reported spiritual practices such as praying and physical exercises, including dancing and yoga, as coping strategies for their ailment.
Self-belief regarding the effectiveness of conventional therapies for cancer treatment
Positive attitude regarding conventional therapies
Scientifically proven
Participants expressed a variety of perspectives regarding the effectiveness of conventional therapies for cancer treatment. When asked about the quality of treatment from hospitals, the majority of the patients found it useful. They believed that their cancers could be cured from these therapies. Advancements in new technologies regarding effective treatment of cancer were the reasons given by the patients. Patients reported modern therapies were different from the traditional ones where the methods of preparations and doses have been the same for centuries.
"Hospital medicines are the best, because I believe it is scientifically proven and the research is on all the time. I believe they (modern medicines) ensures complete cure" [P6-Colon cancer].
Fixed dosing system
Fixed dosing system was given as one of the reasons patients perceived modern therapies as effective. Patients compared it with the traditional therapies where the medicines are usually given without any fixed dose or method of administration. Study participants also reported cancer as a disease that needs complete eradication of cancer cells, and a proper regimen after regular intervals is important, which they perceived as deficient in traditional ways of healing.
"Yes, for me chemotherapy is the best way to treat cancer. Because medicines given by the doctors have certain dose, we know what will be the side effects and how to deal with them, not like traditional medicines, no specific dose at all, we are not sure what side effects, will we suffer and how bad are they to our body" [P4-Breast cancer].
Treatment cost
Interestingly, high treatment cost was given as one of the reasons patients perceived modern therapies to be effective. Because traditional medicines can be bought easily from the local markets at cheap prices, some patients perceived them as ineffective for the treatment of cancer.
"Like these hospital medicines you know it is very expensive, you cannot afford sometimes and it's not as easy to buy like traditional medicines, if you check the price per cycle... is around few thousand Malaysian Ringgit (RM)....so there must be some cure that is why they are so expensive....right?" [P14-Colon cancer].
Negative attitude regarding conventional therapies
The study finding also shows that patients at the metastasis stage had a slightly negative perception of the effectiveness of modern therapies. Still, these patients were compliant with the therapies recommended by their oncologists, but due to the poor prognosis, they viewed modern therapies as only a way to prolong their life span.
"No I don't think so, cancers are curable, the therapies given can just delay the process of death....the process of treatment is actually delaying the final outcome (death)" [P12-Colon cancer].
"I think we just want to prevent it from getting worst or to prolong the life only. Because you know cancer runs through blood and it can reach to other places very fast, so just to control that we need to take these therapies" [P14-Colon cancer].
Because the study participants were getting treatments from the hospitals, it is possible that they already have a positive perception regarding conventional therapies. However, this study findings can help into identify the basis of their perceptions of the effectiveness of conventional therapies. Some participants compared the effectiveness of conventional therapies with the traditional ones and many described the lack of safety profile and poor efficacy of traditional medicines as reasons for opting for conventional treatment. There was however, some negative perception regarding the effectiveness of conventional therapies among patients at advanced stages and this demands an in-depth investigation to ensure patients' compliance with palliative care management.
Personal self-belief and experiences regarding conventional medicines' adverse effects
Fear of side effects due to conventional therapies
Most of the participants reported a fear of side effects from chemotherapy and radiotherapy. Other major worries include the chances of survival at the time of cancer diagnosis. Despite the latest developments in cancer care and the numerous ways to avoid the side effects due to chemotherapy and radiotherapy, a strong negative perception was observed among cancer patients, which accounted for defaulting on proven therapies in some cases.
"After surgery doctors advised me to go for chemotherapy, but I refused, I felt I am not strong for chemo, as I heard drugs for cancer are very hot" [P10-Breast cancer].
Lack of knowledge regarding currently available conventional therapies and their side effects, as well as beliefs that are strongly influenced by the previous experiences of family or friends were among the reasons strengthening the fear regarding conventional therapies.
"But to hear that chemo is the therapy, my tears went down automatically. We are not familiar with the chemo and somehow others tell us that the chemo is terrible and exhausting and causes too many side effects. I'm not afraid with the hair lost but I fear the pain" [P19-Cervical cancer].
"I've seen a relative who defecates in bags. He also did chemo for his intestinal cancer. If I'm not mistaken, he couldn't afford to finish his third chemo and died. He was already old (70 years old) and chemo made him lethargic. He died before getting his third cycle of chemo" [P17-Cervical cancer].
Fear of surgery
Fear of surgery and removal of cancerous organs were some of the reasons given by patients to explain the delay in seeking conventional therapies.
"Some people told me that after removing the organ, there would be other risks because as aging occurs, we will not be fit as before. The effects (of aging) will be faster" [P17-Cervical cancer].
"My family and relative stopped me not to see the doctor. They said, if once the body touched by knife or sharp object (referring to the surgery) it will make my health condition worst" [P10-Breast cancer].
Positive attitude regarding the side effects due to conventional therapies
Although there had been some initial misconceptions and fear of side effects of conventional therapies, the majority of the cancer survivors showed a positive attitude in coping with the general side effects after chemo or radiotherapies.
"Yes I lost my hair, I was bald but after that it grown black, beautiful black hair, I always tell this to my friends (those having cancer), if you want black hair you should go for your chemo. I never skipped my treatments and appointments" [P2- Breast cancer].
Another cancer survivor reported that to accept the side effects as a reality was important, in contrast to denying these effects, a path that would just lead to treatment failure and nothing else.
"You have to accept that there are good and bad effects of all drugs...true or not? You see my life for the past 5 years, I come to the ward for chemotherapy for 3 days and 2 nights, than later on, it takes 3 days to recover from the side effects, so my life is 1 week of chemo and than another week with the side effects and the third week I will come back for my chemo again. So you just learn to accept the side effects, there is no such thing as 'No side effects'. When you eat rice too much also you will get diabetes, if you take too much of salt also you will get high blood pressure" [P12-Colon cancer].
Fear of chemotherapies appears to be the main factor that drives patients away from the proven therapies and may push them towards seeking unproven therapies. However, the perceptions appeared to change as patients continue with the modern therapies, and effective measures had been taken to reduce the side effects as much as possible, coupled with proper counselling and social support.