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Tuesday, Nov. 20, 2007

A support service for sufferers


Staff writer

Phones ring off the hook in the office of VOL-NEXT, a Tokyo-based company that offers various goods and services for women battling breast cancer. Chiharu Soga, the demure 42-year-old who runs the three-year-old company, has just fielded a phone call made in desperation by the sister of a recently diagnosed patient.

Chiharu Soga of VOL-NEXT
Chiaru Soga of VOL-NEXT and her employees try on hats for breast cancer patients TOMOKO OTAKE PHOTO

The sister called because the patient is too panic-stricken to talk to anyone, Soga said one recent morning after putting the phone down, noting that the patient's mother is mentally unstable because the illness has brought back memories of her husband's death from cancer.

VOL-NEXT's nifty, nicely-decorated office in the trendy Aoyama district could almost double as one of those foot-massage salons found all over Tokyo, with mellow instrumental music playing in the background.

"Patients' needs are very diverse, and they can be quite demanding at times," Soga said quietly. "Some people tell us they are so depressed they want to die."

As the number of women diagnosed with breast cancer rises in Japan, with National Cancer Center figures showing a surge from 11,123 in 1975 to 40,675 in 2001, the demand for services to meet the particular needs of patients is also rising. Soga is unfazed by the flood of emotional pleas for help, because she knows exactly what it feels like to have death knocking on your door. Soga is a breast-cancer survivor herself — as well as a survivor of a painful divorce and financial woes.

Her life changed irreversibly in 1999, when the then J-WAVE radio newsreader who spent time between Tokyo and Okayama — where she also ran a wedding-planning company — found a lump in her breast while taking a shower the morning after one of her many sleep-deprived nights. She broke the news to her then husband, who panicked and left her soon after.

As she underwent the surgery and treatments that followed, her mother's business — a car dealership — went belly up. Soga not only used all her savings and life-insurance money to repay the debt her mother had accumulated, but also found herself inundated with calls from angry creditors. That's when she found, 1 1/2 years after the first surgery, that the cancer had returned, forcing her to undergo surgery to remove more of her breast.

But her hardship was not without meaning, she now recalls. She gained strength through the encouragement of the doctor who treated her for the second case of cancer and interactions with other breast-cancer patients, whom she met over the Internet. She set up a support group with them, which expanded into VOL-NEXT (VOL stands for "Voice of Life") in 2004.

Staffed mostly by breast cancer survivors, VOL-NEXT offers a range of goods and services for women with breast cancer. In the Aoyama office, which also has a shop, and via the Web, the company sells a line of wigs, bras and hats, all of which have been tried out by staff to make sure they are comfortable — and fashionable enough.

Finding the right hat is a big concern for women who have lost their hair due to chemotherapy, Soga says. The company receives customers by appointment-only because many say they are so ashamed to show their hairless heads to strangers that they do not want to try out hats in public.

The company also offers counseling for patients and/or families, as well as aromatherapy, nail care and lymph massage lessons — all of which match patients' need to still experience fun and comfort while coping with the physical and mental stresses of the disease.

Because many doctors in Japan are poor at communicating with patients, Soga's company also organizes six-month courses that certify participants as "lifestyle coordinators" for cancer patients in Japan. Such coordinators can serve as "translators" between patients and doctors, who often sprinkle jargon in their speeches and show paternalistic attitudes, Soga said, noting that for many patients, meeting doctors is like "visiting a foreign country."

Few other businesses provide such services, though a growing number of experts are offering breast cancer and other cancer patients psychological care. One of them is Park Sunre, a research associate at Tokyo's Keio University Hospital's faculty of nursing and medical care. She holds counseling sessions for people diagnosed with breast cancer, thus helping alleviate their post-diagnosis shock and confusion.

Park, a licensed nurse and clinical psychologist , said attending to the psychological needs of cancer victims is important in improving their quality of life. "Breast cancer patients need special care, because losing breasts can affect their sexuality and body image enormously," Park said. "Many sufferers in Japan are actively involved in both parenting and careers (since they are in their 40s and 50s). They often feel guilty toward their children and other family members for becoming sick. We need to recognize such feelings exist, and support them."



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