As breast cancer awareness month draws to a close, Sarawak healthcare campaigner Agnes Padan is desperately campaigning for women in rural Sarawak to have access to breast cancer screening. For most women in the interiors, it is just too expensive to get themselves checked, or seek further investigations and diagnosis.
“Village clinics do not have the facilities for a breast ultrasound or mammogram for screening. They would have to travel for hours – sometimes seven or nine hours – to get to a specialist hospital.
“These women are daily wage earners and going to the hospital would mean going a day or two without income. They can’t afford this. Not to mention the cost of the journey which could amount to RM75 or RM300, ” says Agnes.
According to the National Health and Morbidity Survey (NHMS 2019), breast screening rate in Malaysia is extremely low: three in four women aged 40 and above have never had a mammogram. The situation in Sarawak, says Agnes, is likely to be even worse although there isn’t data on on breast cancer screening for women in rural Sarawak. But Agnes believes the number is far lower than in Peninsula Malaysia.
There is a pressing need, she says, for mobile mammogram units to bring breast cancer screening facilities to villages and longhouses throughout Sarawak.
“We also really need better equipped hospitals and specialist services in our district clinics. Even if they make it to the hospital for their biopsy or diagnosis, many would not be able to return for follow-ups or treatment, which are only available in the big hospitals in Kuching, Miri, Bintulu or Kota Kinabalu. They just can’t afford to, ” she says.
And even for those who can make it for treatment, the wait to begin chemotherapy is often very long and this too poses a problem. Even if detected early, by the time a woman gets treatment, the cancer would likely be at an advanced stage.
Retired nurse Cecelia Una, who is campaigning along with Agnes, shared the tragic story of her niece who passed away from breast cancer last year while waiting for treatment.
“She detected a lump in her breast in August 2018. She went to the hospital in Kuching to get it diagnosed and found out that the cancer was already in Stage 3. However, she had to wait nine months before she could start chemotherapy in June 2019. Unfortunately, she passed away in February 2019, ” says Cecelia.
Time for change
The lack of access to health & cancer services in rural Sarawak, says clinical oncologist Dr Yolanda Augustin, needs to change so that women in rural Sarawak are not overlooked and allowed to fall through the cracks.
“Sarawak has been neglected in access to healthcare and cancer treatment. There needs to be a policy shift. Sarawakians need more facilities such as mobile breast cancer screening facilities and satellite cancer treatment units as at present cancer services are mostly centralised in the capital Kuching and staff in government hospitals are very stretched. We need a model where rural women don’t need to travel so far and spend so much to get cancer screening and treatment.
“Right now there is some (monetary) travel allowance given for cancer patients to travel to hospitals for treatment. But there is no allowance for pre-diagnostic testing which is important because early detection saves lives, ” says Dr Yolanda who is currently a senior oncology research fellow at St George’s University of London. She is working on a global health project between St George’s and Universiti Malaya to increase access to affordable cancer diagnostics and therapeutics in lower and middle-income countries.
A majority of cancer patients in rural Sarawak are unaware of My Salam and other welfare benefits that may help them throughout the course of their cancer treatment, says Agnes.
“We need social worker teams to help these patients access the support and benefits they are entitled to, ” she says.
Agnes has, for the past 18 years been pushing the state and federal government to improve health access to the people of Sarawak. Apart from health access, breast cancer awareness is also extremely low in Sarawak. For her, the mission is personal: In 2002, Agnes’s mother Kam Agong died from postpartum hemorrhage (excessive bleeding) two months after delivering her eighth child, Jordan, at the Lawas District Hospital.Like many district hospitals in the state, the hospital in Lawas has been without a gynaecologist, or any specialist, for the past 55 years even though Lawas has a population of more than 50,000 and the district hospital also serves the surrounding villages.
“Most of the women in the interior don’t examine their own breasts. They are ashamed to touch their own breasts. And, if they do find any lump or abnormalities in their breast, they keep quiet because some think that it is atonement for something they did. For those in the longhouse, they keep it to themselves because they don’t want the whole community to know. There is a huge stigma around these things, ” explains Cecelia.
Many cancer patients end up in the hospital only when the cancer is at a very late stage, at which point very little can be done.
“We have heard of many sad cases from the interior of women in villages and longhouses hiding breast lumps because of fear and stigma. By the time they seek medical help, many have advanced fungating tumours, and the cancer may have spread to other parts of the body. We hear of many stories of these women sadly passing away soon after, ” says Dr Yolanda.
Know your lemons
At the moment, expecting women who go to the maternal and child health clinics at district hospitals in Sarawak are given thorough breast examinations during pre and post-natal check ups, says Cecelia.
“The nurses and doctors also teach them how to perform breast self examinations and talk to them about the important of being diagnosed early and getting treatment.
“But what about the elderly or those in remote areas who cannot travel to the clinics. The sad reality is that hospitals and clinics in the state are understaffed and medical staff don’t have the time to go to the longhouses and villages to carry out checks, ” explains Cecelia, who is from Betong, in Sarawak and used to be with the state’s flying doctors service.
So, while campaigning for the state government to improve access to healthcare and breast cancer screening and waiting for the winds of change to reach Sarawak, Agnes and Cecelia Una have decided to act first. They’ve launched a campaign to raise awareness about breast cancer among rural Sarawakian women.
The Know Your Lemons campaign is a worldwide campaign that started in the United States to teach women about the symptoms of breast cancer and how to feel for any abnormalities by using lemons.
A dozen lemons, each bearing a different indicator of the disease show women what breast cancer can look like: lumps aren’t the only indicator that something’s wrong. The 12 symptoms are dimples, nipple crust, red or hot splotches, fluid, skin sores, bumps, thickened skin, growing vein, sunken nipple, diffferent shape or size, hard lump and orange peel skin. Hard to imagine but when seen on the lemons, the signs become clear.
The campaign was adopted by University Malaya, driven by driven by breast surgeon and advisor for Worldwide Breast Cancer, Dr Nur Aishah Mohd Taib and Padan and Cecelia are bringing it to the women in Sarawak.
"So far, though we have only just started it, we have seen that it is effective. We have had women come to us to find out more. Four women actually asked us about referrals," says Cecelia.
The two women are about to become Know Your Lemon educators after which they will train other educators - so far they have recruited several retired nurses and other retirees to join them in their campaign.
"We hope that we can spread the work through this campaign. We will have small gatherings or tea parties in their homes so that they feel comfortable to talk and ask questions. We hope that once we talk to a few women in a village they can spread the word in their community. Hopefully, this way more women will be breast aware and not feel ashamed or embarrassed to talk about their health," concludes Agnes.
Already a subscriber? Log in
Get 20% OFF The Star Digital Access
Cancel anytime. Ad-free. Unlimited access with perks.
