Cancer care: ‘The alternative contributing to deaths’
KUALA LUMPUR,. When humanities lecturer Farah (not her real name) felt a lump in her breast in 2019, she was worried it was breast cancer.
A visit to two doctors confirmed her fears – she had Stage III breast cancer. Her doctor wanted her to start treatment immediately: she recommended surgery and chemotherapy.
At that stage, the tumour had grown larger and was said to have spread to the lymph nodes or other tissues. However, it was still manageable and the chance of survivability was relatively high, at 59.7 per cent.
Farah agreed to begin treatment, but her husband had other ideas.
“(Farah) would have done (conventional treatment). She knew the reasons why she should do it. But she was at crossroads,” said Farah’s friend and former colleague, who asked to be identified only as Emilia.
She said Farah’s husband wanted her to try traditional medicine to treat her cancer. In this case, it involved a traditional medicine practitioner who was recommended by a friend and promised his herbal concoctions would help her beat cancer.
“After that, she (Farah) consulted me and said: ‘It’s not that I (don’t want treatment), but I need to ensure that my decision involves my family. The most important person for me right now is my husband. I am doing this for him’,” Emilia told Bernama.
After about six months of receiving traditional medicine, Emilia said Farah, who she described as a bit of a people-pleaser and had problems saying no, went back to her doctor and began treatment.
That delay was costly.
By then, Farah was already at Stage IV, where the cancer had spread to other organs or areas of the body.
According to the US-based Cleveland Clinic, this stage is also known as ‘metastatic’, or advanced cancer.
After almost two years, Farah died just before her 50th birthday and in pain, after her cancer spread from her breast to her bones. She is survived by her husband and their four-year-old daughter.
Farah’s story is too common among oncologists and medical professionals dealing with cancer. These are the stories that haunt them – patients whose cancer was detected early enough when survivability was relatively high, only for them to refuse treatment in favour of alternative or traditional medicine until it is too late.
As the world takes stock of advances and losses on World Cancer Day, which falls on Feb 4 every year, the doctors are highlighting the dangers of relying on traditional or alternative medicine to cure cancer.
It may also be one of the reasons why Malaysians’ five-year survivability rate is not as good as it should be, especially when compared to countries such as China, which is an upper middle-income country like Malaysia, as well as to Singapore, South Korea and Japan.
While medical authorities accept the benefits of traditional and alternative medicine in certain circumstances, they also stress that the medicines’ usefulness ends at being complementary.
Doctors say they cannot replace conventional medical treatments and should only be used to help patients deal with the side effects of cancer treatments.
According to the National Cancer Registry 2012 to 2016, one out of 10 Malaysian men had a lifetime risk of developing cancer, and one in nine among women. The top cancer for women and overall was breast cancer at 34.1 per cent out of 115,238 cases.
In men, it was colon cancer at 14.8 per cent. The latest five-year study is expected to come out this year.
The Malaysian Study on Cancer Survival (MyScan), published in 2018 by the National Cancer Registry Department in the National Cancer Institute, Ministry of Health, found that the five-year survival rate, which tracked how many cancer patients were alive after five years since diagnosis, for breast cancer was at 66.8 per cent, while for colon cancer, it was 56.8 per cent.
Compared to countries like China, Singapore, South Korea, Japan and Australia, Malaysia does not fare well. China’s five-year survival rate for breast cancer is 80.4 per cent.
It is the same with other cancers, although Malaysia is slightly better than China when it comes to colon cancer.
Malaysia’s rates, however, are better than Thailand and India’s.
In the past, health authorities have blamed cancer deaths on a lack of awareness and access to and availability of treatment as most cases were detected too late.
And Malaysia, similar to its Asian neighbours, has a deep-rooted custom of relying on and believing in traditional and alternative medicine to treat and cure every ailment, as outlined in the paper Traditional and Complementary Treatments among Malay, Chinese and Indian Chronic Diseases: A Systematic Review.
(The paper was written by academics from the Department of Counsellor Education and Counselling Psychology, Faculty of Educational Studies, Universiti Putra Malaysia, and was published in the Malaysian Journal of Medicine and Health Sciences in April 2019.)
Since then, cancer treatments have improved by leaps and bounds, with some medications able to target the tumours directly, depending on the type of cancer.
Stage IV cancer used to be a death sentence, for example, and now many people are still alive after five years, doctors say.
Awareness has also improved, based on oncologists’ anecdotal reports – according to these experts, they are seeing more people at a younger age coming in for cancer screening.
Nevertheless, it is still quite common to see patients choosing to go the alternative traditional medicine route upon receiving a cancer diagnosis, said clinical oncologist Dr Eznal Iswadi Mohd Mahidin from Kuala Lumpur Hospital (HKL).
“What I usually come across from patients is, (they tell me): ‘I want to try first for a few months, then I (will) do CT scan. And if it doesn’t respond (to the alternative medicine), only then I will follow your advice, doctor’,” he said.
“And while they are waiting and seeing, the cancer is growing. So we end up seeing patients three months (later) and these are the patients who have progressed from Stage II to either Stage III or Stage IV.”
Dr Eznal Iswadi added that it was not a question of availability of medical treatment, saying that even when he told patients he could start treatment the next day, those who were intent on going the alternative route, or no route at all, would still refuse.
Every oncologist has a tale of the one patient that got away, which haunts them to this day.
It has been a while, but Sunway Medical Centre Velocity (SMCV) consultant oncologist Dr Hafizah Zaharah Ahmad still remembers clearly a patient with uterine cancer.
“She was at Stage I, 50-plus (years old). All she needed was surgery, that’s it. End of story. No need for chemo, no need for radiotherapy.
“But the patient did not show up for her surgery,” she told Bernama, adding that she just ‘disappeared’, until fellow oncologists told Dr Hafizah Zaharah that the patient had gone to a government hospital seeking medical treatment a year later.
By then, the
cancer had advanced to Stage IV.Dr Hafizah Zaharah stressed that while Stage IV is no longer an automatic death sentence, the likelihood of being cancer-free at that stage is low. She added that she had encountered this sort of issue many times.
“Sometimes, you feel (frustrated) when you see patients refusing a potentially life-saving treatment and then, one year later, they come back to you, already bed-bound,” she said.
The patient in question had since passed away, she added.
Why alternative medicine?
As a private facility, the number and type of patients who seek treatment for cancer at SMCV differs from public hospitals such as HKL. Private hospitals tend to cater to higher-income groups, while public hospitals serve the lower and middle-class groups.
Their clientele is also smaller compared to public hospitals. SMCV saw at least 1,580 cancer patients in 2023, while HKL sees about 25,000 cases a year, including more than 3,700 new cases.
As such, the alternative medicine gap between private and public health facilities can be quite jarring.
Dr Hafizah Zaharah said less than five per cent of her patients would choose to go for traditional or alternative medicine after diagnosis.
She said it might be due to selection bias as patients, who went to private hospitals for medical treatment, tended to be motivated to get better.
Whereas in the public sector, patients might only be interested in finding out what was wrong with them with no intention of following through with treatment.
“At HKL, about a third of its cancer patients opt for traditional or alternative, or no, treatment due to many reasons,” said Dr Tang Shir Ley, clinical oncologist at HKL.
“They are very afraid of surgery. There is also a huge stigma of chemotherapy in Malaysia,” she said.
The so-called side effects of cancer treatment include temporary hair loss, surgical removal of breasts and having to wear colostomy bags, which many find too distressing to live with.
Dr Tang said people tended to share horror stories about the side effects of chemotherapy, although a majority of patients did not have major problems. Some also did not consider the type of cancer and its stage when talking about the side effects.
“They attribute the patients’ illness to the treatment instead of the cancer itself,” she said.
Consequently, the fear would drive the patients to traditional and alternative medicine, hoping that they could beat their cancer by ingesting some herbal concoctions that supposedly had anti-cancer properties.
“And sadly sometimes, it’s not the patient’s decision. They are pressured by family members, the spouse or their next of kin,” said Dr Eznal Iswadi.
“If (the alternative medicine) worked, we would have prescribed it,” added Dr Tang.
She also said beginning treatment as soon as possible would not only improve one’s chances of surviving, but it would also be cheaper.
Immunotherapy drugs for cancer treatments could run up to RM28,000 a month, for example.
For public hospital patients, Stage I cancer treatment would not only be shorter, but cheaper too as its cost is subsidised by the government.
The cost of treatment was not prohibitive to Farah, but her husband’s fear of losing her to surgical complications engulfed everyone. She did end up getting the surgery six months after diagnosis, but it was too late to stop the spread of her cancer.
Farah passed away when the Movement Control Order to curb the spread of Covid-19 was still in effect.
Her friend Emilia never knew how badly Farah was doing, nor did she have a chance to say goodbye or go to her funeral.
Initially, all she had of Farah were regrets.
Since then, Emilia has made peace with Farah’s death and the guilt for not being able to be with her friend in her last months.
Now that Emilia has moved to Kuala Lumpur for a new job as a lecturer, she plans to visit Farah’s grave soon.