Breast cancer is the leading form of cancer among women. According to the World Health Organisation, breast cancer causes the most cancer deaths each year.
In Malaysia, more than 40% of breast cancer cases are diagnosed in the advanced stages (Stage Three and Stage Four), which means the cancer has spread locally to other areas of the breast or beyond to the lymph nodes and other organs such as the lungs, liver or bones.
For this group of patients, the chances for successful treatment are relatively lower compared to those diagnosed at the early stages of the disease. Peer support is crucial for these women.
There are support groups such as the National Cancer Society of Malaysia (NCSM)’s Pink Unity, Breast Cancer Welfare Organisation and the Breast Cancer Foundation. But breast cancer survivor Mahani Kassim, 54, feels more needs to be done to reach out to rural women.
“We have several support groups for breast cancer patients and survivors in the big cities but these are out of reach for women in rural areas. They are the ones who need it more. They don’t have access to information or support and as a result, many don’t seek treatment.
“Although NGOs do run outreach programmes from time to time, this isn’t enough. The government needs to step in and make sure that all women have equal access to support services,” she says.
Mahani counts herself lucky. As a government servant, she was eligible for a two-year paid medical leave after her diagnosis. Not many women, however, are as fortunate.
“I’ve met women who don’t come for their hospital appointments or treatments because they have to look after their young children and don’t have anyone to relieve them of their duties. Some just can’t afford the cost of coming into the city,” shares Mahani.
Although there have been advancements in the treatment of the disease, Mahani feels hospitals should place some emphasis on providing cancer patients with emotional and psychological support.
“Medically, I think our hospitals are fantastic. But recovery for a cancer patient involves more than just medical treatment. Many women who have been diagnosed with cancer don’t know what to do next. Apart from the chemotherapy and radiotherapy, where do they go to for emotional support?
“When you are diagnosed with cancer, you are confused, scared and lost. Hearing from another survivor makes all the difference in helping a woman deal with the diagnosis. Hospitals should be able to refer patients to peer support networks. Ideally, this should be within the hospital or at community clinics that are more accessible,” she says.
Mahani is speaking from experience. A few years ago, she was diagnosed with myasthenia gravis, a neuromuscular disease and had to undergo an open heart surgery to remove her thymus gland.
“It was a huge surgery and I was scared. But before I went in for my surgery, the hospital had someone who had been through the surgery talk to me. The man was in his 70s and he looked fit and healthy. He explained what he went through and shared his experiences.
“Doctors can tell you the same thing but it is different when you hear it from another patient. I immediately felt better and thought if he could get through it, I could too.
“This is the kind of support breast cancer patients need too. After the shock of your diagnosis, if you can talk to a survivor who has been through it and is coping well, you will be encouraged to fight,” says Mahani.
At the moment, NCSM has started peer support programmes for breast cancer patients in several hospitals, such as at Hospital Kuala Lumpur, Tung Shin Hospital, Kuala Lumpur and the General Hospital in Melaka to reach out to newly diagnosed patients. The support services are carried out by members of their support group, Pink Unity.
“We are also developing a ‘train the trainers’ programme to standardise our peer support services. We plan to set up a help desk at all major hospitals and cancer clinics in every state,” says Adeline Joseph, head of NCSM’s Resource and Wellness Centre.
Support Groups In Malaysia
Peer support groups are invaluable resources for support, services and information. If you have breast cancer or have a loved one with breast cancer, get in touch with a support group.
BCWA was founded in 1986 by medical specialists who realised the need for peer support for women with breast cancer.
Tel: 03-7954 0133
Tel: 03-2698 7300
Facebook: Pink Unity
National Cancer Society Malaysia helpline: 1-800-08-1000
● Breast Cancer Foundation (formerly known as Pride Foundation)
Tel: 03- 7960 0366
● Pink Penang