Cancer care: Medical treatment and beyond
Experts these days have included another treatment for cancer patients: caring for their mental health through counselling. In Bangladesh though, this is completely ignored
Bina Rahman, 65, was diagnosed with breast cancer in 2017. After surgery and several sessions of chemotherapy and radiotherapy, she was declared cancer-free in 2019. But just a year later, during the pandemic, she suffered a recurrence. But this time, it was in her ovaries and not her breast, something her oncologists in Dhaka failed to diagnose. Her condition had kept deteriorating while she received treatment for breast cancer.
As their last hope, her family took her to Chennai once the borders reopened. After a few tests, she was diagnosed with ovarian cancer. By this time, the misdiagnosis and wrong treatment in Dhaka had caused the disease to spread to other parts of her body as well.
As of last year, there were more than 1.5 million cancer patients in Bangladesh, according to a World Health Organisation (WHO) report. It is estimated that by 2030, there will be 21.4 million new cases of cancer in Bangladesh.
This disease, which kills around 1,50,000 people in the country every year, has yet to receive the attention it deserves.
As a result, Bina and hundreds of patients like her in the country suffer through no fault of their own. With only one government run specialised cancer hospital in the capital — the National Institute Of Cancer Research and Hospital (NICRH) in Mohakhali — patients have no option but to resort to private hospitals.
But even in private hospitals, test facilities are limited; for example, PET scan, one of the most accurate tests to detect cancer and its spread, is currently only done in Medinova Medical Services, United Hospital Limited, and Evercare Hospital Dhaka.
Only Square Hospital, Labaid, Ahsania Mission Cancer Hospital, Evercare Hospital Dhaka, United Hospital Limited and Delta Medical College and Hospital have radiotherapy facilities.
Chemotherapy is comparatively easier as patients have to buy the medicine and there are small clinics who can administer them.
Not every hospital also has labs to conduct tests such as FNAC (Fine Needle Aspiration Cytology) and biopsy.
Lack of hospitals with one-stop or comprehensive cancer treatment facilities means for different treatments or tests, patients have to run around different hospitals.
According to Cancer Epidemiologist Dr Habibullah Talukder Ruskin, there are 250 to 300 oncologists in Bangladesh at the moment — a small number to cater to around 2,00,000 people who are affected by cancer every year in the country.
Regarding treatment costs, he said that compared to public hospitals, private ones charge significantly more. Radiotherapy sessions at NICRH cost around Tk15,000 to Tk30,000 in total, whereas private hospitals charge up to Tk2 to Tk3 lakh.
"Even at a normal private clinic, a surgery will cost at least Tk1 lakh. Chemotherapy sessions can cost up to Tk1 to Tk1.5 lakh, or even more, depending on which private hospital it is."
Genetic tests, vital to determine whether cancers will spread to the patient's next of kin, are not conducted in the country. Only one private hospital in Dhaka collects samples, at a significantly high price, and sends them to Bangalore.
The World Cancer Day 2023-2024 theme is "Close the care gap" and this year's focus is on "Uniting our voices and taking action". On this, Dr Habibullah said, "Cancer care in our country is usually translated as cancer treatment. But cancer care includes protection, early detection, suitable treatment, and palliative care as well. Unfortunately, in our country, even doctors believe treatment is the only thing they should be worried about.
"We do not have the capacity to treat the large number of patients in the country. As of now, there is no functional national cancer control strategy or programme. There is a national cancer council, but only on paper," he added.
Foreign medical care still filling in the gaps
Each year, more than 7,00,000 Bangladeshis travel abroad for medical treatment; a large number of them are cancer patients.
In 2021, Jahan E Gulshan's long-term gynaecological issues required surgery and her doctor told her it was going to be a three-day stay in the hospital. The doctor did not mention the possibility of cancer or do tests to confirm otherwise.
Only after suffering at the hospital for almost a month, did she get to know she had aggressive ovarian cancer and her time for survival was less than five years.
However, after she went to the Tata Memorial Hospital in Mumbai, India, she was told her surgery had been done incorrectly and her cancer was not aggressive in nature.
"I did not want to go stay in a foreign country, without friends and family members, and go through something as traumatising and difficult as cancer treatment, but I had to; I had no option," she recalled.
She said not only do patients not get the right treatment in Bangladesh, they also suffer from a general lack of empathy. Often, patients also complain of doctors and their assistants being impatient and lacking compassion.
She shared with us a story of a young boy whose mother was diagnosed with lung cancer. "One day, he came home from school, crying and saying he did not want to go there anymore. Apparently, his classmates told him his mother must have been a bad human being and smoked a lot of cigarettes, which is why she got lung cancer."
Jahan's own doctor refused to explain the treatment process to her saying "he was not there to give her a lecture".
Lack of psychological treatment, and empathy
Usually, cancer treatment includes surgery, chemotherapy, radiotherapy, and hormone therapy. But experts these days have included another treatment: treating patients' mental health through counselling and other ways. In Bangladesh, this is completely ignored.
Roksana Afroz was diagnosed with fourth stage ovarian cancer in 2017. Her treatment was done in Dhaka's CMH (Combined Military Hospital) and Singapore. She said that while she received oncological treatment in Dhaka, she received no psychological treatment.
"Cancer treatment, especially chemotherapy, is a psychologically devastating thing for patients. During chemotherapy sessions, even after them, patients feel utterly helpless. Dealing with organ loss or hair loss is also extremely tough."
Singaporean doctors had informed Roksana that she had a 90% chance of recurrence. "I knew I was going to have cancer again and mentally prepared myself for it. It is important to not give patients false hope."
She chose to stay away from anything negative, be it a comment from a relative or something on social media. Her positive mindset helped her stay strong. During the lockdown, she took a six-month course on mental health and has been since providing counselling sessions to other cancer patients.
"I come across people who are going through body shaming after mastectomy (surgical removal of breasts) as well as those whose partners have lost interest after treatment. Many are facing financial difficulties. There are so many cases."
The ordeal is difficult on family members of the patients too.
Shayema Shafiz Sumy lost son in 2016 to leukaemia. He was four years old. When she took him to Kolkata as per doctors' advice, she realised how great an impact empathy can have, especially on patients' family members.
"In seven months, we needed around 200 bags of blood. Every time the donors and their behaviour amazed me and filled my heart with gratitude. There was one person who could not donate blood but held my hand when my son was dying."
Shayema now runs a small organisation called Proshanti which provides mediation, nutritional counselling, etc. to cancer patients.
The importance of palliative care and nutritional counselling
"I used to live by myself in Singapore in a fairly large house," says Zeina Hamid, who studied molecular and cell biology at the National University of Singapore.
"Sometime in 2006 or 2007, I received a request from someone asking whether a family from Bangladesh who had come to Singapore for their child's cancer treatment could stay in my house, and I agreed."
Since then, Zeina has been voluntarily playing the role of a caregiver for cancer patients. Currently, she is looking after five patients and supporting them with many things, including visiting the hospital or doctor's chamber with them, providing them with nutritional advice and many more.
She said educating patients on their conditions or wellbeing is largely absent in Bangladesh. Doctors very rarely explain these to patients. On nutritional advice, she said, "I often see cancer patients are given a similar diet chart as that for reducing obesity. But that is not right."
Palliative care, which terminally ill patients and their families require, is also an area which requires immediate attention in Bangladesh, she opined.
At present, palliative care is only offered by Bangabandhu Sheikh Mujib Medical University (BSMMU).
There are times when families also refuse to understand the situation. She recalled the story of one patient, a professor, whose cancer had spread to an advanced stage. By looking at her files, Zeina felt surgery was not an option and that the patient required palliative care. "She said she had to undergo the surgery because her siblings desperately wanted it. But eventually, her surgery was a disaster and she died. The pain she went through could have been avoided," she sighed.
WHO has stated that "palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well."
The most common question Zeina comes across is "Am I going to die?" But cancer and death are not synonymous; patients can live many years with the right treatment, nutrition and lifestyle changes, she says.
A long road ahead
Dr Ruskin said the cancer care and treatment system in the country needs to be brought under one umbrella. Moreover, every upazila should have a specialised cancer centre so that patients from other parts of the country do not have to come to Dhaka for treatment.
"At first we need to provide patients with everything they need, only after this can we work on developing the accuracy of our tests. Every patient outside the capital should receive proper diagnosis and treatment," he said.
On a more positive note, he said, "In the last 20 years, we have progressed in cancer treatment. We have brought in world standard machines in our hospitals, and our doctors are now more specialised in the disease."