Cancer patients of the AYA generation "I want to overcome it by connecting" December 12 11:17

Cancer is said to affect one in two people in Japan. Among the patients, those in their 2 to 1s are called the "AYA generation," which is an acronym for "Adolescent and Young Adult" in English, and it is said that about 15,30 people nationwide are diagnosed with "cancer" every year.

The AYA generation faces many life events such as employment, marriage, and childbirth. In these generations, cancer has led to the breakdown of marriages and the resignation of some people.

Three years ago, a 2-year-old woman was diagnosed with cancer. What emerged from the interview, in which she talked about her painful heart, was that cancer patients of the AYA generation were trying to overcome each other's worries by connecting with each other.
(Utsunomiya Broadcasting Station reporter Kazuaki Hirama)

Diagnosed with cancer in my 20s

"Three years ago, I was diagnosed with cancer,"

says Yukari Kawashima (pseudonym, 3 years old) in a cheerful tone.

This is a woman I met in September at an event held in Mibu Town, Tochigi Prefecture to support cancer patients.

Kawashima's cancer is a tumor of about 9 centimeters found in the thigh of his right leg. It was a relatively early-stage cancer that had not metastasized. From the way he spoke cheerfully, it didn't look like he had cancer.

Ms. Kawashima visits the hospital's outpatient clinic once every few months. Because there is still a risk of recurrence.

Every time she gets tested and the doctor explains the results, she says she feels like she's praying.

On the day I was allowed to accompany him for the interview, he did not have a recurrence.

The treatment that Mr. Kawashima received consisted of surgery and administration of anticancer drugs. After chemotherapy, all my hair fell out.

Every morning, she would see her hair falling in bunches on her pillow and sometimes she would cry alone.

Yukari Kawashima (pseudonym):
"I wanted to look away, and I was very worried about what I would do if I looked like this. The desire to be cute as a woman was gone. I don't feel like buying cosmetics anymore. I don't think they will see me as a woman... That's what I thought."

Many cancer patients suffer from changes in their "appearance" due to treatment.

This is even more true for women of the AYA generation.

I thought I had found "happiness"...

After completing chemotherapy, Kawashima decided to marry a man she had been dating since she was a student last year. I thought I had found happiness.

However, before he went to greet the other party's parents, Mr. Kawashima said that his marriage partner said something unexpected to him.

"Please don't tell your parents about cancer," she said, and she was worried that her cancer treatment would make her unable to have children, and

that she would be opposed to marriage.

Yukari Kawashima
: "I was shocked, and I wondered why I had to hide it. I felt that having cancer was a stigma or a bad impression."

Do I have to hide the fact that I have cancer?

Mr. Kawashima couldn't talk to anyone, and he spent his days in a daze.

When Kawashima consulted with her doctor about her pregnancy, she was told that it would not affect her pregnancy.

Depending on the type of anticancer drug, it may affect pregnancy, but the treatment that Mr. Kawashima received is considered to have little risk of infertility.

"I wasn't alone..."

The source of Mr. Kawashima's heart was a friend he met at the same workplace.

She was a 4-year-old woman who was four years older than Ms. Kawashima, but she was the same age as her at work and was an uncomfortable presence.

One day, Mr. Kawashima confided in him that he had cancer, and he received a surprising response. A friend of mine was also experiencing cancer.

Since then, as fellow cancer patients, we have become a relationship where we talk to each other about our worries that we can't tell others.

My friend was diagnosed with cancer seven years ago, when he was 7 years old. Thyroid cancer. Surgery and radiation therapy have removed the cancer, but the risk of recurrence remains.

My friend told the man she was dating at the time:

"Wouldn't it be better if I married someone different from me?" he

said after thinking about his partner's life.

In response, the other man said, "Knowing that, we are still dating, so it doesn't matter," and showed his determination to face difficulties together.

My friend got married to an adult. However, it was difficult to have a child, and since last year she has been undergoing fertility treatment.

My friend is also told by the doctor that there is no problem with pregnancy, but I wonder if I became infertile because I had cancer ... He sometimes blames himself.

A friend
at the same workplace said, "There are times when I think about giving up on having children, and sometimes it is hard because I wonder if I would have been able to be a father to the other person if I hadn't had cancer. But having Mr. Kawashima, who I can talk to about anything, is nearby, and I'm saved."

Mr. Kawashima also said that having a friend by his side made him feel better. I didn't think there were people around me who had experienced cancer in their 20s.

Ms. Kawashima was able to confide in other friends about her cancer and the painful experiences that followed.

Then I found out that my high school classmates had the same cancer. Through the common illness of cancer, we have rekindled our bonds.

In fact, there may be more people around you who are struggling to tell others that they have cancer.

Mr. Kawashima was beginning to feel that way.

Yukari Kawashima
: "There may be many children who are worried because they can't tell anyone that they have cancer, and if you have cancer patients of the same generation around you, you can talk to them about their problems, but I think it is difficult to connect with such children."

Patient community of the AYA generation

Ms. Kawashima wanted to create a place where cancer patients of the AYA generation could talk about their concerns.

So, in the spring of this year, I published a free paper for patients with fellow cancer patients. In the first issue, Kawashima published an interview with a woman who was diagnosed with cancer in her 20s.

The woman
revealed that she considered "egg freezing" to prepare for the risk of not being able to get pregnant ▽ but later broke up with the man she was dating

▽ now that she has cancer and understands how grateful she is
for her family and friends.

In the second issue this fall, we held a dialogue titled "Aya Talk" with six cancer patients of the AYA generation. Most of the six of them met for the first time. There are also patients of the AYA generation who read the articles in the first issue and participated in the roundtable discussion.

In the roundtable discussion, they talked openly about the hardships of treatment, anxiety about the future, and worries about marital relationships and child-rearing. I had never talked about it before, even to my closest peers at school or work.

Dr. Kawashima feels that the publication of the free paper is gradually expanding the circle of patients of the AYA generation.

Kawashima: "There are many things that people want to know, such as when the hair that falls out due to chemotherapy will grow back, or whether cancer is communicated at job interviews and medical examinations, but I think the reality is that there are no patients of the same generation around us, so we cannot exchange information. I'm glad that I was able to get access to that kind of information that I wanted to know, and in some cases, connect with them."

On the other hand, Ms. Kawashima feels that it is difficult to deliver free papers to cancer patients of the AYA generation. This is because the number of cancer patients in the AYA generation is small, about 2% of all cancer patients.

For this reason, Mr. Kawashima is also actively promoting the free paper. During the interview, Ms. Kawashima visited the venue of an event to support cancer patients.

This is an event for patients to introduce solutions to hair loss and skin problems caused by treatment. We thought that patients of the AYA generation, who are sensitive to their appearance, would come to these events.

Ms. Kawashima visited the people in charge of manufacturers who sell makeup products and asked them to put the free paper in a place where patients could see it.

There are currently about 50 stores and facilities in Tochigi Prefecture that have free papers. In the future, Mr. Kawashima would like to visit medical institutions and libraries to increase the number of facilities where free papers can be placed.

Yukari Kawashima
: "I hope that the free paper will be an opportunity to create a community of cancer patients of the AYA generation, and I think that the characteristic of the AYA generation is that they cannot tell others that they have cancer, so I hope that the AYA generation, which tends to be isolated, can be scooped up through the free paper."

Cancer patients of the AYA generation: "A system that supports society as a whole"

In this interview, many medical professionals said that support for cancer patients of the AYA generation is a major issue. Social workers who support patients at hospitals have even voiced their concerns that doctors are focused on treatment and are not close to the AYA generation.

However, when I interviewed doctors, I found that they were not able to provide support to patients of the AYA generation.

In addition to the small number of patients in the AYA generation, there are many rare types of cancer called "rare cancers," so the development of drugs and treatments has not progressed at all. As a result, the treatment outcomes of cancers such as the legs, which are common in the AYA generation, have not improved compared to 10 or 20 years ago, and they have no choice but to concentrate on life-saving treatments. The doctor himself said that he listened to the patient's concerns and tended to be slow to follow up after treatment.

The lives of the AYA generation survived severe treatment. In order to live a long life with a smile on their faces, it is necessary to have a system that supports not only the efforts of patients themselves like Ms. Kawashima, but also the support of society as a whole.

(Broadcast on "Good Morning Japan (Kanto-Koshinetsu)" on November 11)

Utsunomiya Broadcasting Station reporter
Hirama joined the station
in Heisei 8 for three years during the Corona disaster, covering frontline medical institutions.
He also produces documentaries that focus on childhood cancer patients and their families.