RI lags in detecting, treating childhood cancers

The Jakarta Post , Jakarta | Wed, 06/13/2007 9:19 AM | Life

Rita A. Widiadana and Wasti Atmodjo, The Jakarta Post, Kuta, Bali

Ira Soelistyo had faithfully accompanied her son, Donny (an alias), as he battled cancer for over 20 years.

""My son died at the age of 25 from leukemia,"" recalled Ira, the founder of the Indonesian Childhood Cancer Foundation.

Her son was diagnosed with leukemia when he was just 4 years old. Leukemia is general name for four different types of blood cancers.

""That was in l983, when childhood cancer was still widely unrecognized and medical technology was not as advanced as it is today ... It was quite fortunate we found out about his disease at the earliest stage, and the chance he would recover from this deadly disease was quite big,"" Ira said on the sidelines of an International Confederation of Childhood Cancer Parent Organisations (ICCCPO) meeting held early April in Kuta.

During the long, tiring and painful treatments, which included stem cell treatment in the Netherlands, her son grew like a normal child, going to school and playing with his friends. A few years before his death, doctors pronounced that his cancer had been eradicated.

""He looked so healthy, but God took him at such a young age. It was God's will, and we never thought that his death was caused by cancer,"" Ira recalled.

Ine Siti Ratnasari, 25, is an energetic and intelligent young woman. She was diagnosed with retinoblastoma -- eye cancer -- before she had turned 4 years old in l982.

""My parents found there was a small white dot on my eyes, like cat's eyes,"" she said.

According to the National Cancer Institute, retinoblastoma is cancer that forms in the tissues of the retina (the light-sensitive layers of nerve tissue at the back of the eye), and usually occurs in children younger than 5 years of age. The cancer may be hereditary or non-hereditary.

Ine, the fourth daughter of Abdul Asya'as Arie and Suprianah, said she was lucky to have such patient and dedicated parents.

""My parents took me everywhere to get my eyes treated properly,"" she said.

But the cancer grew fast, quickly affecting her optic nerves, and one of her eyes had to be removed surgically to prevent the cancer from spreading rapidly to other parts.

""My left eye is artificial,"" she said.

Despite her illness, Ine continued to enjoy her childhood and teenage years. Eventually, she graduated cum laude from the Diponegoro University's School of Husbandry in Semarang, Central Java.

""Parents' understanding and patience are key to early treatment and possible recovery,"" said Ine, but many children who suffer from various types of cancer diseases are not so lucky.

According to Dr. Ahmad Hardiman, director of Non-Communicable Diseases of at the Health Ministry, many children are diagnosed with cancer in the late stages because of parents' lack of understanding and inaccurate diagnosis.

Childhood cancer comprises only three percent of all cancer patients.

""However, it (cancer) ranks as the No. 2 killer in children,"" Ahmad said.

The International Agency for Research on Cancer estimates that around 120 cases of cancer are found in one million children worldwide.

Meanwhile, Jakarta's Cipto Mangunkusumo General Hospital revealed that 30 to 40 new cases of childhood cancer arise in the capital every year. The hospital is currently dealing with 347 child patients with leukemia and 137 patients with retinoblastoma.

In Indonesia, an estimated 650 new cases of childhood cancer are recorded every year.

Achmad said that 30 to 40 percent of child cancer patients had leukemia, 20 to 30 percent had brain cancer and 20 to 30 percent had eye cancer, with the remainder diagnosed with other forms of cancer, including bone cancer.

At Sanglah Public Hospital in Denpasar, Bali, the number of child cancer patients presently numbers 153.

""Most of the patients have leukemia,"" said Dr. Ida Bagus Mudita, an oncologist at Sanglah, which accepts around 50 children with cancer every year. ""With intensive treatment, the level of recovery reaches about 44 percent,"" Ida said.

Prof. Iskandar Wahidiyat, who chaired the ICCCPO meeting, said that a number of risk factors contribute to children developing various types of cancer. These factors could be hereditary or non-hereditary, such as environmental conditions.

For example, children living in a home environment exposed to tobacco smoke and hazardous chemical substances are vulnerable to developing cancer, and the consumption of certain drugs by pregnant women may affect their fetuses.

""There are many other risk factors,"" Iskandar explained. He further said that 70 percent of childhood cancers were curable, provided that they were detected in the early stages.

He also noted that consuming vegetables, fruits and fiber-rich foods can prevent children from developing cancer.

""A lack of understanding of cancer symptoms in children has hampered early detection and medication,"" he added.

The Indonesian Childhood Cancer Foundation has been active in spreading information on child cancer across Indonesia since it was established in 2000.

""Parents should first recognize if there is something physically wrong with their children,"" said Ira, who also established the Kasih Anak Kanker Foundation.

Ira acknowledged that Indonesia lagged behind other Southeast Asian countries in providing medical treatment and social support for children with cancer.

""We have hundreds of hospitals all over Indonesia, but only a very few have an adequate oncology ward, especially for children,"" she said, stressing that children with cancer must be treated in special hospital facilities.

""There has been very little progress in cancer facilities as well as oncologists in Indonesia's hospitals since 1983, when I first took my son for cancer treatment,"" she said.

Ira identified several problems that typically occurred in detecting cancer in children.

""The lack of information, knowledge and facilities are a perfect combination as to why cancer in children is difficult to diagnose,"" Ira said.

""We plan to establish a special school for children with cancer. They need special education because unlike normal, healthy children, they have to leave school for long and painful medical treatment which, in the end, disturb their studies,"" she added.

The ICCCPO meeting spread a clear message inviting parents, doctors, the government and society to pay more serious attention to children with cancer. Adequate and appropriate medical treatment must be provided to treat their diseases and to help them pursue healthy and normal lives.

Further, healthcare infrastructure and human resources must be improved to give these children access to better and quality services.

Cancer treatment, support for children, parents

Parents who have children with cancer must not be discouraged. A number of organizations in Indonesia and other countries are ready to provide information and medical help.

Some organizations have even raised funds to help finance medical treatment as well as parent and community support services worldwide for children with cancer.

Below are a few key resources:

Yayasan Onkologi Anak Indonesia
Indonesian Children's Cancer Foundation
Dharmais Cancer Hospital, Fl. 1
Jl. Let. Gen. S. Parman, Kav 84-86
Central Jakarta
Phone: (021) 5681612/5681570 ext.2030
Fax: (021) 5681612
yoai@indosat.net.id

Indonesian Cancer Foundation
Jl. Dr. Sam Ratulangi 35
Jakarta 10350
Phone: (021) 3152606/2603, 3920568
Fax: (021) 3108170
ykipusat@rad.net.id

International Confederation of Childhood Cancer Parents Organizations
www.icccpo.org

National Childhood Cancer Foundation
www.curesearch.org

- The Jakarta Post

Comments (0) | Post comment

A | A | A |