End gender roles in the fight against breast cancer

KUALA LUMPUR - The 47-year-old breast cancer patient read and re-read the letter in her hand, her face a myriad of emotions.

When she spoke, her voice was strong with anger and regret.

"I’m really upset. Because when he was sick, I took care of him. But now when I’m sick, he is like avoiding me,” Noraniza Ismail told Bernama.

The letter was from the Syariah court overseeing the Bukit Mertajam area in Penang, where she lives. In it was her court date - Oct 29, 2024 - which is when her 49-year-old husband will declare divorce in open court. The reason for it? Her breast cancer.

To say she was upset would be an understatement. They have been together for 13 years and have two daughters aged eight and six together, and a 24-year-old son from her first marriage. When her husband developed complications from diabetes and became bedridden in 2021, she took care of him, on top of being the breadwinner and taking care of their older daughter who has Down’s Syndrome.

They were married, she thought. And marriage meant sticking by your partner through thick and thin, and in sickness and in health.

Then in August 2022, she felt a lump in her right breast. Her husband, who lost his job during the COVID-19 lockdown, did not assist her much. Instead, she found she had surgery, chemotherapy and radiotherapy in addition to her present duties, with only her son to help her with childcare.

It was downhill from there.

"He was okay at first after diagnosis. What he wasn’t okay with was because I told him I had to do a mastectomy to remove one breast,” she said via Zoom, adding the cancer has spread to her left breast.

In May this year, he told her he was divorcing her. And like many women before her and after her, she is left juggling and fighting to keep what’s left of her family together as best as she can, while also fighting for her life.

BREAST CANCER AND PATRIARCHY

What Noraniza is going through may be awful but it is unfortunately not that unusual. While most spouses do not leave their partner when they get seriously ill, the ones who do leave - about six percent - tend to be men, according to a study by Amelia Karraker and Kenzie Latham that was published in the September 2015 edition of Journal of Health and Social Behaviour. The researchers analysed 2,701 American marriages.

Malaysia does not have any data on the number of divorces among patients with breast cancer or other illnesses. However, medical professionals and academics told Bernama it is a common trend, enough that many women say they do not want to inform their husbands or involve them in the treatment process, for fear their husbands will divorce them.

Muslim women also worry that their husbands will marry another.

Divorce or no divorce, the burden of household chores and caregiving falls on women even when they are undergoing treatment, and who have reported feeling distressed and stressed as a result. Experts said this can complicate their treatment and recovery, possibly contributing to Malaysia’s low five-year survival rate behind China and Singapore, according to the 2018 Cancer Survival Study (MYScan) report by the National Cancer Institute, Ministry of Health.

Breast cancer was the most common cancer affecting 38.9 women per 100,000 in Malaysia from 2017 to 2021, according to the National Cancer Registry Department. A majority of cases (50.5 percent) are still detected at Stage III and IV.

Universiti Malaya Medical Centre (UMMC) public health medicine specialist Prof Dr Nirmala Bhoo-Pathy told Bernama it is important to recognise that breast cancer management and women’s rights intersect.

She said in many cases, one of the reasons women were presenting late was because of the lack of agency over their health, and entrenched gender roles.

"Lack of agency, lack of power in decision-making. You don’t have control over your own body. You have to ask somebody for permission. And for this, I think we cannot say it is only low education because women who are highly educated also do the same thing,” she said via Zoom.

She added that often, the husband or family will want the woman to try traditional medicine first. And, if the women go against their husbands or families, such as undergoing screening to detect breast cancer at early stages, some will face backlash.

"Screening is deemed as looking for trouble,” Dr Nirmala said. "When people are faced with this, it seems to imply they are not prioritising their family and (instead) doing things for their own benefit.”

Gender roles are prevalent everywhere but more so in Asian societies. In Malaysia, women are expected to do the caregiving work, including childcare and eldercare, as well as cooking and other household chores. Men's caregiving role usually focuses on transportation tasks, according to the 2019 Time To Care: Gender Inequality, Unpaid Care Work and Time Use Survey by Khazanah Research Institute.

The Karraker study noted that when a serious illness befalls the female partner, there is a shift in the dynamics. When women are usually the ones doing the cooking and cleaning in the relationship, it can be difficult for husbands to adjust.

Dr Lai Suat Yan, a senior lecturer in the gender studies programme at Universiti Malaya said when men are not used to taking care of the house, they usually underestimate how taxing cooking, cleaning and childcare can be.

"Men are so used to being supported at home so when that is no longer available, I think they find it hard,” she said.

MEN IN BREAST CANCER MANAGEMENT

Often, the pull of family responsibilities and self-care are in opposition with each other.

Some women still have to carry the childcare and household burden on their own, causing stress, which is not good for recovery.

"When we are in a lot of stress, actually a short duration of stress is helpful, but when it is for a long duration of time, it can be harmful to the immune system,” said Dr Hafizah Zaharah Ahmad, clinical oncologist at Sunway Medical Centre Velocity.

Some women also miss out on treatment or drop out altogether, which is even worse. Like in Noraniza’s case, dropping out of treatment only causes the cancer to grow to the point that treatment will be more expansive and expensive with very little chance of success. Cancer symptoms also become more painful as they progress.

One way to improve the survival rates of breast cancer patients is to get their husbands to step up to assist their wives by shouldering some of the household and childcare burdens. Experts said men should also educate themselves on breast and other cancers.

National Cancer Society of Malaysia’s Dr Jason Chin Yu Aun said the benefits of men getting involved in their wives’ treatment are numerous, including helping them detect cancer early due to their unique access.

"If you pick it up early, treatment is fast, easy and cheap. Whereas later, it’s much more expensive,” he said.

"If a man knows why it’s important to do early screening, they will allow women to go because it’s a difference between keeping your breast and not keeping your breast,” he added.

While the divorce rates of breast cancer patients will likely not fall to zero anytime soon, experts say things have improved compared to the past. Doctors report seeing many husbands accompanying their wives to their medical appointments, compared to a decade ago.

Dr Chin said men should not be afraid to ask how they can help, adding their lack of support could be due to ignorance, rather than malice.

SERVICES AVAILABLE

Breast cancer treatments are no longer straightforward. While doctors work to kill the cancer and heal the patient, the world has realised patients need a lot more than just to have their tumours shrunk and removed. The medical profession has realised the importance of having mental and social support.

Social services now exist to ease women’s burden of family and household responsibilities and improve compliance rates. There are patient navigation services run by the National Cancer Society of Malaysia (NCSM) and Cancer Research Malaysia (CRM), working in conjunction with the Ministry of Health. There are also non-governmental organisations that provide similar services.

CRM, for example, helps connect patients to financial resources and also helps patients with groceries and childcare. They have Pink Ribbon Centres in government hospitals in Seremban, Klang, Kota Kinabalu and Kuching.

Meanwhile, NCSM has two centres in Hospital Kuala Lumpur and Hospital Melaka.

Dr Chin said NCSM also has volunteers on the ground in other states to help patients.

And if cooking is still difficult to master, there are online businesses that deliver home-cooked meals or easy-to-prepare meals, for a price. However, these services tend to serve urban areas, leaving rural patients out of luck.

Even if all the services are available everywhere for free, it does not absolve men from their duty to provide support to their wives.

"Women are the pillar of society. Marriage is a partnership,” said Dr Chin.

But as Noraniza’s case has demonstrated, it is easier said than done.

As she prepares for life as a single mother, Noraniza said her main regret was the time she spent taking care of her husband when he was bedridden, waiting on him hand and foot. Because of that, she delayed her cancer treatment, causing her to go from Stage II to Stage III.

"I really regret (neglecting my health because I was forced to take care of him). Because when it came to me, he didn’t even appreciate what I did for him. He just ignored me,” she said.

What she does not regret is removing her diseased breast, even if it cost her her marriage.

Anger is fueling her preparations for the future, but so is hope. She aims to defeat the cancer.

"I’ve no issue removing it (breast). All I want is to be healthy so that I can take care of my children,” she said. - BERNAMA