Bringing Cancer Closer, One Puff at a Time

Anita Rachman & Arientha Primanita

Most days, just after dusk, Casniti and six or seven other housewives used to gather on the small terrace of her home in Pondok Pinang, South Jakarta. She has many fond memories of those times: evenings full of chitchat and laughter, black coffee, plus packs of cigarettes for the whole group to puff.

Casniti, 70, a self-proclaimed heavy smoker, recently told the Jakarta Globe she was enamored with those gatherings, which started after her husband’s death in 1985. During the interview, Casniti, who has lung cancer, lay on her bed most of the time, producing faint replies.

Only a small fan gave the stuffy room a light breeze, and in one corner stood two canisters containing the pure oxygen she relies on, because breathing has become a struggle for her.

She was very thin and weak. So weak, she couldn’t go to the toilet by herself, making adult diapers necessary.

Casniti said many people were surprised at her condition, because just a year ago she was still very active. She joined a Koran recital group and took part in neighborhood gatherings, and also sold food to support her family.

Before the cancer began attacking her, she weighed 70 kilograms and was thought to be healthy by those who saw her. “She used to be very chatty and loud,” said Casniti’s fifth child, Karyono Indra, 39.

“I was shocked and sad. I never thought that my mother would get such a serious disease,” said Karyono, the only child in the family who doesn’t smoke.

Shortly after the interview, Casniti succumbed to her illness, dying last week.

A lung cancer tale

Casniti’s tobacco use started when she was just 12, while in sixth grade at sekolah rakyat , equivalent to elementary school today.

“I used to smoke my grandma’s used cigarettes. She used to smoke cigarettes mixed with betel leaves,” she said, adding that it was only an “experiment.”

But it did not stay an experiment. She kept smoking after she got married and had eight children — even after the habit killed her husband, Taman bin Resa, who died of kidney and lung disease. He was also a heavy smoker, Casniti said.

After her husband died, Casniti said she became a caterer, cooking for her neighbors’ weddings, hajj pilgrimage or children’s circumcision events.

As a caterer, her companions were friends lending hands — and cigarettes, lots of them.

“We were all smoking. It helped us stay up all night,” she said. “We didn’t even have to spend money to buy cigarettes because they were given to us for free.”

Little did she think that her relationship with tobacco would give her cancer.

“I didn’t know that smoking could give me this [lung cancer],” she said, adding that she tried to make her seven active-smoker children and friends aware of the danger by giving herself as an example.

Pfizer’s Global Cancer Statistics 2011 study says that lung cancer is the most common or second-most common cancer among males in all Asian countries. Using 2008 data, the study says that in Indonesia, the incidence of lung cancer is 20 per 100,000 males and 7 per 100,000 females.

Dr. Wahyuningsih, a pulmonary specialist with the Pertamina Central Hospital (RSPP) and the head of the Jakarta branch of the Indonesian Pulmonary Specialists Association, said cases like Casniti’s were becoming more common — although comprehensive data on women with lung cancer is not available. But she said that in the past 10 years, she has seen more women treated for lung cancer.

The first question a doctor asks a diagnosed lung cancer patient is “Do you smoke?” Wahyuningsih told the Jakarta Globe. Roughly 80 percent of male lung cancer patients reply with a “Yes,” she said, while only 60 percent of female patients are active smokers.

“The rest are passive smokers, those who got exposed to smoke. … It could be from family members who smoke inside the house,” she said. “In some cases, however, people get the cancer because of genetics.”

Cigarette smoke can erode mucous membranes, exposing the cells underneath. Chronic and continuous exposure to the smoke will trigger abnormalities in a cell’s growth, making in cancerous.

Expensive treatment

The disease usually needs 10 to 20 years to grow extensively, but in some cases it only takes five, Wahyuningsih said.

“It is different from one [person] to another. But we are seeing more female patients now who got lung cancer in their 40s,” she said.

In Casniti’s case, the cancer grew slower. Her lung cancer was discovered last October after she had trouble breathing. Her children took her to RSPP where she had a thorough checkup.

Her children said Casniti went through radiotherapy for 30 days and also chemotherapy after she was diagnosed with cancer. But she couldn’t stand the chemotherapy due to her advanced cancer and age.

“It’s very expensive, I heard. But thank God, my mother was supported by my father’s office insurance [at state-controlled utility Perusahaan Listrik Negara]. Otherwise, I don’t know what we would have done. Most of us are factory workers,” said Sugiharto, Casniti’s third child.

“I wish I could replace her. I couldn’t stand watching her this weak, she couldn’t breath,” said Heru, another child.

Dr. Jamal Zaini, from Persahabatan Hospital detailed the cost of treatment for the Globe. Just to diagnose whether a patient has lung cancer costs almost Rp 10 million ($1,050), which includes a CT thoracic scan and bronchoscopy to diagnose the tumor.

The therapies, he continued, cost more. If the cancer is still in the early stages, a patient can consider surgery, at a cost of Rp 50 million to Rp 60 million, the doctor said.

But for those whose cancer has reached stage 3B or 4, they have no option but therapy. A round of radiotherapy costs Rp 5 million to Rp 10 million, while chemotherapy costs Rp 3 million to Rp 4 million per treatment.

For those who have enough money and don’t want to undergo these therapies, Jamal said, there is a special medicine that is an alternative. “One pill will cost you Rp 800,000 and you will have to take it for the rest of your life,” he said.

Given these facts, Jamal said, the government should protect citizens from smoking. That include increasing public awareness through education campaigns and graphic warnings on cigarettes packs.

Some doctors say the costs of smoking-related illnesses mean once the social security, or BPJS, scheme is in place, the government will need to pour funds into medication. Jamal said the amount would be substantial, because of cases involving poor people such as Casniti.

A warning to female smokers

But stopping people smoking isn’t easy, even those who have witnessed the death of a smoker.

Casniti’s daughter Wartini seemed not to take her mother’s health as a lesson. “I had a friend who did not smoke but he was diagnosed with cancer,” she said.

“When I was pregnant I limited my cigarette consumption, but I didn’t fully stop. I just had to smoke,” she said.

Health Minister Nafsiah Mboi expressed concern about the increasing number of female and young smokers. She told the Globe that cigarettes were the world’s No. 1 killer.

To cut the number of smokers, she said, the government is preparing a tobacco-control regulation. But the draft has not yet been signed by President Susilo Bambang Yudhoyono. The regulation will require more smoke-free areas and visual warnings on cigarette packs.

“In the long term, we hope smokers, especially early ones, will fall to minimum numbers and hopefully zero,” she said. “We want to minimize the impact of smoking so that people’s lives can be better.”