[Special Feature: Cancer and Society] Mayumi Kusumi: Support at the Keio University Hospital Cancer Counseling and Support Center

Cancer care is evolving daily, and with the development of various treatment methods, treatment options have increased. We are now in an era where the expectations of patients and their families for treatment, as well as how they wish to approach their chosen treatment, are being questioned. I believe that the involvement of Cancer Counseling and Support Centers is increasingly required so that individuals can make choices about their lives and treatments that are true to themselves. As a Core Hospital for Cancer Genomic Medicine and a Designated Cancer Hospital, Keio University Hospital provides cancer care such as cancer genomic medicine based on gene panel testing. In this article, I will discuss cancer and social issues from the perspective of patient support, including the role of the Cancer Counseling and Support Center, the current status of cancer counseling support at Keio University Hospital, and future challenges.

Cancer Counseling and Support Centers (hereinafter referred to as "Centers") are established at "Designated Cancer Hospitals" and "Pediatric Cancer Hub Hospitals" nationwide (463 locations nationwide as of April 2025). These are cancer-related consultation desks that anyone can use free of charge and anonymously, regardless of whether they are currently visiting the hospital, and consultations are available at any time regardless of the status of diagnosis or treatment. At the Centers, nurses and social workers certified as "Cancer Consultation Specialists" respond to inquiries. Utilizing their respective professional knowledge, their role is to "support patients and their families by providing reliable information based on scientific evidence and the practice of cancer consultation specialists, enabling them to make life and treatment choices that are true to themselves."

The social background behind the birth of the Centers was the "Cancer Control Promotion Action Plan 2005." They were created as places to conduct a comprehensive review of cancer control from the perspective of the public and patients, and to play a role in "providing useful information" and "providing support through accurate information" to alleviate the anxieties of the public and patients. Furthermore, as a systemic background, there is the "Cancer Control Act (enacted in 2006)," and Centers are opened at "Designated Cancer Hospitals" and similar institutions to promote the "Basic Plan to Promote Cancer Control Programs (the latest is the 4th term: 2023)" created by the government.

At the Centers, you can consult on various matters accompanying cancer treatment, such as cancer treatment and side effects, recuperation life after treatment, money, work, school, relationships with family and medical staff, doubts, worries, and anxiety. Furthermore, care is taken to ensure that the content of the consultation is not shared with the attending physician or others without the consent of the person seeking advice.

Keio University Hospital was designated by the Ministry of Health, Labour and Welfare as a "Designated Cancer Hospital" in April 2011. It is used by 120,000 cancer outpatients per year (total annual number of cancer outpatients) and 6,500 cancer inpatients per year (total annual number of cancer inpatients). To respond to various consultations regarding cancer, we established the "Cancer Counseling and Support Center," which currently has a service desk at the Medical Liaison Desk "1R" on the 1st floor of Building 2. We handle 4,900 consultations annually, primarily from patients visiting the hospital but also including inquiries from the community. As of May 2025, the cancer consultation specialists consist of 8 social workers and 12 nurses. The nurses serving as cancer consultation specialists handle consultations in their respective departments, such as the outpatient clinic, utilizing the strengths of their specialized fields. The social workers hold national qualifications as Social Workers or Mental Health Social Workers. They support patients and families in solving problems (social, psychological, and economic) associated with recuperation that hinder disease prevention, treatment, and social reintegration through their own efforts, and are engaged in the promotion of social welfare and the coordination of health, medical care, and welfare. Consultation topics frequently include inquiries about our hospital's cancer treatment and cancer genomic medicine, as well as "consultations regarding hospice and palliative care," "consultations regarding symptoms, side effects, and aftereffects," "consultations regarding medical expenses, living expenses, and social security systems," and "consultations regarding social life such as employment and work."

Cancer patients face diverse challenges, including not only physical and mental pain but also anxiety about recurrence, impacts on social life and relationships, economic burdens, and fear of death. In addition to "individual consultations with cancer patients and their families," the Center holds "Patient Salons" as a place for cancer patients and their families to learn and talk with one another. We also provide a "Cancer Information Corner" as a space to provide information broadly related to medical care, health, and daily life, such as diseases, tests, nutrition, and medicine. Furthermore, the Center serves as the contact point for the "Supporting Kids of Parents with Cancer (SKiP KEIO)," which is composed of various professionals within the hospital. With the trend toward later marriage and the increase in cancer incidence among young people, the number of patients and families facing treatment while raising children is also increasing. For these diversifying support targets, there is a demand for consultation support to solve or improve the concerns of the consultee, support for proactive decision-making, and information support.

Click here for the Keio University Hospital Cancer Counseling and Support Center website

Keio University Hospital Cancer Counseling and Support Center

In the Cabinet Office (2023) "Public Opinion Survey on Cancer Control (Reiwa 5)," regarding the impression of cancer, 90.2% had a "scary impression" (total of "scary" and "somewhat scary"). Regarding the reasons for feeling scared (multiple answers possible), reports show: "because cancer can lead to death" (81.6%), "because symptoms such as pain may occur due to the cancer itself or treatment" (62.8%), "because cancer treatment and recuperation may place a burden on family and close friends" (58.6%), and "because cancer treatment costs can be high" (57.7%). It can be seen that many people have the impression that "cancer is scary," and a diagnosis of cancer leads them to associate it with "death," perceiving it as something that brings impacts on daily life, burdens on family and those around them, and economic anxiety. In the same survey, in response to the question, "Do you think the current Japanese society provides an environment where one can continue working if they need to visit the hospital about once every two weeks for cancer treatment or testing?", 45.4% said "I think so" and 53.5% said "I do not think so," indicating that ingenuity is required to balance work and treatment. Families are also called "second patients," and as people who support daily life from the time of cancer diagnosis, their hearts often waver along with the patient during the course of treatment. With the progress of nuclear families and the increase in people living alone, the hearts and lives of friends who support patients are also sometimes affected. In an era where one in two people will contract cancer, it can be said that we are in an era where almost no one is unrelated to "cancer." Additionally, the Health Economics Subcommittee of the Japan Clinical Oncology Group (JCOG) has conducted fact-finding surveys on various cancer types and pointed out the rising costs of therapeutic drugs. Social conditions such as rising prices also affect the lives of patients, and issues related to work and the economy have become pressing matters in daily cancer consultations. Based on these situations, I will summarize the challenges seen from consultation support and the initiatives at the Center.

(1) Economic challenges and initiatives regarding treatment and living expenses

It is important to support patients so they can consider measures for both expenditures and income themselves. We believe it is desirable for them to be able to make maximum use of the High-Cost Medical Expense Benefit System and other programs. In particular, it is important not to forget to utilize systems related to the name of the disease, such as the "Workers' Accident Compensation Insurance System" and the "Asbestos Health Damage Relief System," which provide support for health damage caused by asbestos. Regarding income, not only the use of injury and sickness allowance and internal workplace systems, but also consultations with professionals such as financial planners can sometimes lead to solutions.

(2) Challenges and initiatives regarding treatment and employment/schooling

It is necessary for medical professionals to convey that there is no need to quit work immediately upon being diagnosed with cancer and that they can think together about ways to continue working. After the treatment plan is decided, it is necessary to discuss how the patient can continue their previous life. We believe it is important to provide support that enhances self-care abilities so that patients can discuss matters with their colleagues at the workplace. For new employment, coordination with the "Employment Support Desk for Long-term Care Recipients (Cancer Patients, etc.)" at Hello Work is also effective. When a student starts cancer treatment, we sometimes provide lateral support so that the school, the individual, and the parents can discuss how to continue their studies in accordance with the treatment plan.

(3) Challenges and initiatives for single-person households

According to the Ministry of Health, Labour and Welfare (2023) "Comprehensive Survey of Living Conditions" and the Ministry of Internal Affairs and Communications (2018) "(1) Increase in Single-person Households" in the "White Paper on Information and Communications," single-person households (households with one head of household) are increasing due to the rising unmarried rate and the impact of nuclear families. In particular, the increase in the number of single-person households aged 65 and over is remarkable. When a person living alone contracts cancer, it becomes essential to build alliances with people they can rely on and people they can send an SOS to. It is necessary to prepare a system for support even when physical condition is poor, a network to obtain correct information, and sometimes measures for pet care, identity guarantees, and how to wrap up one's life. We recommend utilizing public consultation desks and consultation agencies such as Cancer Counseling and Support Centers.

(4) Challenges and initiatives in discerning information

"I want to gather a lot of information from the internet and books to understand the information given by the doctor... but which information is correct?" This is one of the voices we hear in consultation settings. There are research reports stating that "among information sites regarding cancer treatment on the internet, the proportion of sites thought to be providing harmful information is high." We believe that in an era where the internet is overflowing with information, it is necessary to discern information. To enable patients to make decisions through information support, in our daily practice, we suggest "checking reliable information sources," "looking at information from multiple perspectives," and "not taking internet information at face value."

We believe that the important roles of cancer consultation specialists and social workers are to "organize information for choosing treatment methods, support patients in putting what they value into words, and connect those thoughts to the medical team." To ensure that individuals can make life and treatment choices that are true to themselves, we wish to continue supporting patients and their families as members of the team that supports cancer treatment. Please feel free to utilize the "Cancer Counseling and Support Center."