Oct. 1 marks the start of the annual Pink Ribbon campaign to raise awareness about breast cancer.
To highlight the beginning of the campaign, prominent landmarks such as the Tokyo Skytree, Tokyo Metropolitan Government building, Himeji Castle in Hyogo Prefecture and Kobe Port Tower will be illuminated in pink.
Breast cancer is the most common cause of death for women aged between 30 and 64 in Japan. Experts say that 1 in 11 people are currently suffering from the disease and, in 2016, 14,015 women died from it.
Early detection and treatment is key to overcoming breast cancer. To herald the start of the Pink Ribbon campaign, The Japan Times talks to three survivors who are out there trying to make a difference.
Sayaka Matsu, writer
Writer Sayaka Matsu will never forget the time an editor at a publishing house told her that “cancer books don’t sell if the author is still alive.” She still finds the sentiment rather shocking. She is a breast cancer survivor and is not about to let a stereotypical image of what people think a cancer patient should be like define her.
So what does she do? She writes a book about her life and her battle with cancer called “Kanojo Shikkaku: Koi Shiteru dato ka, Gan dato ka” (“Disqualified Girlfriend: Being in Love and Having Cancer”), which was published by Gentosha Inc. in 2013.
It’s far from your typical “cancer book.” It is not a memoir of a beautiful loving relationship with her family that was strengthened because of her illness, nor is it a tragic love story (although it is in a way — more on that later). It’s not a tear-jerker; it’s raw, it’s funny and absolutely nothing is off-limits.
“I know, it’s vulgar!” Matsu says with a laugh. “But that’s life. It is not beautiful nor perfect. … I am just one example and the book reflects how I viewed my life.”
In truth, the book isn’t vulgar, it’s just very, very real. It tells the story of a young, unmarried working woman in Tokyo struggling with a new job who happens to be diagnosed with a deadly disease.
Matsu had just turned 30 in January 2007, had a loving boyfriend and had landed a dream job as an editor at a major publishing firm when she was diagnosed with stage 2b breast cancer. She didn’t have cancer insurance and had only limited savings. The doctor had warned her that the treatments could take about five years and she was at a loss. She didn’t know how she would cope with the reality of a mastectomy and chemotherapy, all the while continuing to work and pay off the expensive medical bills as well as just making ends meet.
However, when she went to hunt down books on survival, all she found were — just as the editor had warned her — “beautiful” memoirs and haiku poems of love and bonding.
“I faced real problems and I urgently needed information, but there was literally nothing,” Matsu says. “Poetry wasn’t going to help me figure out my life, my job, money and the treatments that lay ahead of me. I was an information refugee.”
The thought of chemotherapy frightened Matsu so much that the night before her first treatment she drowned her fears in alcohol. She spent about four hours at the hospital the next day, getting injected with various chemicals, including saline and granisetron to prevent nausea and vomiting, and epirubicin, a chemotherapy drug. Before going home she was prescribed numerous anti-nausea pills, laxatives, anti-bacterial drugs and painkillers. Despite taking the medication, Matsu vomited repeatedly that night and fell asleep by her toilet.
To prepare for hair loss, she carefully braided her long hair, praying that she would be able to overcome the cancer. She later lopped off 25 centimeters before shaving off the rest. Unable to afford a ¥300,000 medical wig, Matsu bought a wig online for ¥29,800.
In her book, Matsu is also very open about her relationship with her then-boyfriend, whom she calls “ossan” (middle-aged man). She discusses not only the emotional turmoil the two went through as a result of her cancer, but also reveals how they became sexless due to the physical side-effects of chemotherapy. At one point, she recalls being deeply embarrassed after throwing up all over the floor in front of him after one of her chemotherapy sessions.
“I wrote about money and sex because I knew that the issues would catch the attention of both patients and nonpatients,” she says. “This is something that can happen to anyone tomorrow … and I had no reservations about describing the reality as it really is.”
In June this year, the nation’s media mourned TV anchorwoman Mao Kobayashi, who was just 34 years old when she died of breast cancer. Up until the last couple of days before her death, she had written in a blog about her life, her family and her illness. People empathized with her as a mother, as a child, as a spouse and as a person.
And while Matsu also recognizes the sadness of Kobayashi’s death, she feels uncomfortable with the way the media treated the wife of renowned kabuki actor Ichikawa Ebizo: as a tragic heroine who fell victim to breast cancer.
“Most stories of cancer patients are not actually that beautiful and not everyone can be like Ebizo-san and Mao-san,” says Matsu, adding that she has often been asked by the media to comment on Kobayashi’s case. “I couldn’t comment because although we might have been diagnosed with the same disease, everything was completely different for me … and that’s why I stress that my story is just one example. I am certainly in no position to represent every cancer patient in the country.”
Matsu is painfully honest about how difficult it was to continue working as an editor while undergoing chemotherapy. Somehow, she made it through all of the cycles and the doctor successfully performed a mastectomy almost a year after she was first diagnosed with cancer. She later completed her five-year hormone treatment and, so far, she has experienced no relapses.
But as life goes on, it continues to be a bumpy ride. She broke up with her boyfriend who, while supporting Matsu through her breast cancer battle, started cheating on her as well. She quit her job as an editor and moved to Taiwan, where her mother is from.
When she returned to Japan in 2013, she couldn’t find a job because the companies kept highlighting her breast cancer. She eventually landed a position as a cabin attendant for a low-cost carrier for a couple of years, flying on both domestic and international flights.
Despite what the editor told her about cancer books, Matsu did find a publisher and has written not just one book but is about to release another at the end of October. And to her surprise, she married a man who proposed to her on their third date. This is a woman who is truly living life to its fullest.
“I don’t want to live the rest of my life in fear of a relapse,” Matsu says. “Nothing in life goes according to plan and, right now, I am just happy living a carefree life.”
Naoko Kuroda, financial planner
It is after hours on a weekday at St. Luke’s International Hospital in Tokyo’s Tsukiji district. The lights are dim and the halls quiet, completely different from the hustle and bustle during the day at one of the largest hospitals in central Tokyo.
One seminar room, however, is lit brightly. Three women enter separately, smiling but looking somewhat nervous. And at 6:30 p.m. sharp, financial planner Naoko Kuroda begins “O-saifu Ringu” (“Wallet Ring”), her two-part session on cancer and money.
“Cancer treatments cost a lot of money, even with the various subsidies provided by the government,” Kuroda explains to the three breast cancer participants. “It would be ideal to talk about the costs with the hospital, but the reality is that doctors need to talk to you about a whole lot of other important things besides money.”
Kuroda began O-saifu Ringu with St. Luke’s hospital in 2015 as a breast cancer survivor herself. She was 40 when she was diagnosed with breast cancer and her daughter was just 5 years old. It was a cold winter’s day in December 2009 in Toyama Prefecture when she was diagnosed. She says she allowed herself to cry that one night.
“I saw my daughter sleeping after I got home and couldn’t help but cry,” Kuroda says. “I allowed myself to be sad for one day, but from then on I didn’t have time to cry. There was nothing I could do about having cancer so I needed to start making plans about what to do from then on.”
Nothing, however, was how Kuroda had imagined it would be. She had walked into her doctor’s office ready to tell him what she wanted — that she would rather die than have a mastectomy.
However, before she could even begin to open her mouth, her doctor began to talk matter-of-factly, telling her she had stage 2b cancer, which meant she would need chemotherapy and a full mastectomy. He told her that her hair would fall out, so she should get a wig immediately, and that her survival rate in five years was 50 percent.
She said that whole conversation was a blur.
“As a financial planner, I had the basic knowledge of cancer and knew the different types of insurance and had more of an understanding of the disease than many other people. Or so I thought,” Kuroda says. “I realized the reality for cancer patients was completely different and I really only found that out because I became one myself.”
It is often said that the family of cancer patients becomes the second patient. Her husband blamed himself for not noticing and made it his mission to support her, telling her what food and drinks she should take or avoid and making sure she didn’t work too hard.
Although her daughter was just 5, Kuroda did not hide her illness. A few years later, however, Kuroda discovered that her daughter had actually misunderstood her illness, after her daughter participated in CLIMB (Children’s Lives Include Moments in Bravery), a program created to educate the children of cancer patients.
“My daughter thought cancer was like a cold and that she would also catch it,” Kuroda says. “It nearly broke my heart to hear that. Children often blame themselves as well. It is really difficult to explain cancer to children.”
Kuroda sought a second opinion and, in the end, was diagnosed with stage 2a breast cancer, so she did not have to undergo chemotherapy, just a mastectomy and hormone treatment. Looking back, she notes, costs start even before the treatments begin, with ¥20,000 here and ¥30,000 there for MRIs and CT scans. She also had reconstructive surgery, which was not covered by health insurance at the time. Kuroda ultimately paid more than ¥3.5 million.
As a patient herself, Kuroda knows firsthand what it is like to be in a doctor’s office and not have the courage to ask how much a treatment or test costs every time the doctor suggests one. And in many cases, the doctors themselves are unaware of how big of a financial burden these costs can be on patients, she says.
There are various government systems to support cancer patients financially, including a high-cost medical expense benefit, which puts a cap on the monthly medical fees depending on several factors, including a person’s income. On average, the cap is a little more than ¥80,000 a month, but if you have a higher salary, the cap could go up to more than ¥250,000 per month. However, the benefits are not widely advertised, Kuroda says, so some people don’t know they exist.
“These are public systems, which means they are self-service — you can benefit from them only if you know such support exists,” Kuroda says. “I feel bad that some people are not given the proper information about money or treatment and end up with regrets. I want to do something to help.”
The discussions at Kuroda’s sessions at St. Luke’s are very real. The atmosphere is lively as they laugh and share their experiences.
One woman, who is currently undergoing hormone treatment after chemotherapy and a mastectomy, says she paid more than ¥200,000 for a wig and advises the other women to wear it a few times before going out because it is “very shiny.” Another woman says she has spent a lot of money trying out various alternative medicines and therapies. The women have jobs and express concern about receiving a poor evaluation or even being fired because of the lengthy treatment.
Kuroda says she hopes more hospitals will create sessions like O-saifu Ringu where cancer patients can address their financial needs and questions so that they can feel secure moving forward with treatments.
“You need money to survive but cancer patients have piles of problems: the illness itself, their mental state, their work, money, their marriage, having children and so on,” Kuroda says. “These problems are all intertwined and deeply affect one another … and that is why it is very important that cancer patients are provided information and support from everywhere.”
Kae Fujimori, model
Model Kae Fujimori stands gracefully in front of our photographer as she clicks away. The changes in her expressions are natural, sometimes looking directly at the lens with a soft smile and at others looking away as if lost in thought. Fujimori appears completely at ease in front of the camera and it is perhaps no wonder, considering she has been modeling since the age of 11.
It’s hard to imagine that six years ago, Fujimori’s whole world changed when she was diagnosed with a rare stage zero breast cancer and had a mastectomy. She owes her good fortune to a friend, a friend who had stressed the importance of getting regular checkups before her death from breast cancer in 2010 at the age of 26. Her friend also had a 2-year-old boy.
Before her funeral, Fujimori applied makeup to her deceased friend’s face.
“Seeing her after she had passed away was surreal,” Fujimori says. “She was still so young and her skin was so soft and smooth.”
In 2011, Fujimori noticed a small lump in her breast and went to get it checked out. The doctor told her that the area where she had found the lump didn’t appear white on the X-ray, which is how cancerous cells usually appear, and so he guessed that it might be a type of abscess. Still bothered by the lump, however, Fujimori sought a second opinion in 2012 and, this time, the doctor performed a biopsy, which she recalls was terrifying because the “needle” looked like a drinking straw but worked like a nail gun. As a result, Fujimoto was informed that she had very early-stage cancer.
The first thing Fujimori did upon learning the news was talk to her management company to discuss her work engagements so that she could schedule her surgery around them, and about whether or not she would go public with her illness. After careful consideration and with the support of her management company, Fujimori decided she would reveal her illness to the public immediately after her surgery.
“In the world of modeling, your body is your capital … I was terrified of going public and not knowing how people on social media and other media were going to react,” Fujimori says. “But it was because of my friend that I am alive today, and I felt I needed to pass the baton to others out there.”
After further testing, Fujimori found out that she had more cancerous tumors in her right breast, and her doctor advised her to have a total mastectomy.
Having a mastectomy was obviously going to affect Fujimori’s job as a model. She frequently had to change in front of other models and stylists, and wondered if they would be able to see the scar. She also wondered whether she would have to place a special pad inside her bra that could change the balance of the clothes she wears. And, naturally, it also affected her emotionally as well.
“I know that some people might say it’s only a breast but, to be honest, I was extremely shocked to lose a part of my body,” Fujimori says. “That’s why some patients go against their doctor’s recommendations and insist on keeping their breasts. However, there is a lot of information out there to see what reconstructive surgery is actually like, and that should help ease people’s fears.”
In a mastectomy, Fujimori says, a doctor removes a patient’s mammary glands and fat, leaving bone, muscle and skin. In Fujimori’s case, a plastic surgeon took over immediately after the mastectomy and began the reconstructive surgery by placing a balloon-like vessel on the bottom of her breast. Over the course of the next few months, the doctor injected liquid into that vessel little by little to stretch the skin, sort of simulating what happens to the skin of a pregnant woman’s stomach. Once the size was right, the vessel was replaced by a silicon substance under general anesthesia.
Fujimori was able to complete the entire process for less than ¥100,000, waiting a year until the surgery was covered by national health insurance.
“It was very painful … but when I first saw myself in the mirror, I was actually relieved that the doctor did a very good job,” Fujimori says.
Since her mastectomy in April 2013, Fujimori has been on the go. Three weeks later, she was already taking part in a TV program and, a month later, participated in a 5-kilometer charity run in Honolulu.
In 2016, Fujimori co-founded the nonprofit organization C-ribbons to support cancer patients. The organization’s website provides information for cancer patients, including interviews with various cancer survivors about their way of life. Fujimori also travels across the country, speaking about her experiences with breast cancer.
The nonprofit group also holds events periodically that are open to both patients and nonpatients. The first event was a beauty session featuring a professional makeup artist. The second was a workout session with both a pilates instructor and Fujimori, who is a balance-ball instructor as well.
Fujimori says many former cancer patients struggle with their life after the illness. As a survivor, her advice is for women to enjoy what they like doing. As a 41-year-old single woman, she says she gets drunk with friends, complains about men, loves to shop and enjoys traveling.
“Inside, I am just like any other woman,” Fujimori says. “When you get sick, there is a lot that you lose or have to give up. The message I want to get across, however, is that you don’t have to give up being true to yourself.”