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

2025/07/04

Cancer care is evolving daily. With the development of various treatments, options have increased, and we have entered an era where the expectations of patients and their families for treatment—and how they wish to approach their chosen treatment—are being questioned. We believe that the involvement of the Cancer Counseling and Support Center is increasingly required to help individuals choose a lifestyle and treatment that is 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 the role of the Cancer Counseling and Support Center, the current status of cancer counseling support at Keio University Hospital, and future challenges regarding cancer and social issues from the perspective of patient support.

Cancer Counseling and Support Centers (hereinafter referred to as "the Center") are established at "Designated Cancer Hospitals" and "Pediatric Cancer Care Hospitals" nationwide (463 locations across Japan as of April 2025). These are cancer-related consultation desks that anyone can use for free and anonymously, regardless of whether they are currently receiving treatment at that hospital, and consultations are available at any time regardless of the diagnosis or treatment status. The Centers are staffed by nurses and social workers certified as "Cancer Counseling Specialists." 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 counseling specialists, enabling them to make lifestyle and treatment choices that are true to themselves."

The social background behind the birth of the Centers lies in the "Cancer Control Promotion Action Plan 2005." It was created as a place to comprehensively review cancer measures from the perspective of the public and patients, and to fulfill the role of "providing useful information" and "providing support through accurate information" to alleviate the anxieties of the public and patients. Furthermore, the institutional background includes the "Cancer Control Act (enacted in 2006)," and the Centers are established at "Designated Cancer Hospitals" to promote the "Basic Plan to Promote Cancer Control Programs" (the latest being the 4th term: 2023) formulated by the government.

At the Center, you can consult on various matters accompanying cancer treatment, such as cancer treatment and side effects, recuperation life after treatment, money and work, school, relationships with family and medical staff, and any doubts, worries, or anxieties. 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 as a "Designated Cancer Hospital" by the Ministry of Health, Labour and Welfare in April 2011. It is used by 120,000 cancer outpatients annually (total annual number of outpatient cancer patients) and 6,500 cancer inpatients annually (total annual number of inpatient cancer patients). To respond to various consultations regarding cancer, the "Cancer Counseling and Support Center" was established, and the counter is currently located at the Clinical 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 local community. As of May 2025, the cancer counseling specialists consist of 8 social workers and 12 nurses. The nurses serving as cancer counseling specialists handle consultations in their respective departments, such as the outpatient clinic, leveraging the strengths of their specialized fields. The social workers hold national qualifications as Certified Social Workers or Mental Health Social Workers. They support patients and families in resolving 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, and welfare services. Common consultation topics include consultations regarding 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 distress 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 a "Patient Salon" 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 a wide range of information related to medical care, health, and daily life, such as diseases, tests, nutrition, and medications. Furthermore, the Center serves as the contact point for the "Supporting Kids of Parents with Cancer (SKiP KEIO)," a team composed of various professionals within the hospital. With the trend toward later marriage and the increase in cancer incidence among younger people, the number of patients and families undergoing treatment while raising children is also increasing. For these diversifying support targets, there is a demand for consultation support to resolve 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 Measures (Reiwa 5)," regarding the impression of cancer, 90.2% of respondents 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 is clear that many people have the impression that "cancer is scary," and a diagnosis of cancer is associated with "death," leading to concerns about the impact on daily life, the burden on family and those around them, and economic anxiety. In the same survey, in response to the question, "If you need to go to the hospital about once every two weeks for cancer treatment or testing, do you think current Japanese society provides an environment where you can continue working?", 45.4% said "I think so" and 53.5% said "I don't think so," indicating that ingenuity is needed 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. In recent years, as nuclear families have progressed and the number of people living alone has increased, the hearts and lives of friends who support patients are also being affected. In an era where one in two people will develop cancer, it can be said that we are in an era where almost no one is untouched by "cancer." Additionally, the Japan Clinical Oncology Group (JCOG) Medical Economics Subcommittee has conducted surveys on the actual conditions of 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 make maximum use of systems such as the High-Cost Medical Expense Benefit System. 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, employment, and 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 work together to find a way to continue working. After the treatment plan is decided, it is necessary to discuss how to continue their previous life. We believe that support to enhance self-care abilities is important so that patients can discuss matters with their colleagues at the workplace. For finding new employment, collaboration with the "Employment Support Desk for Long-term Care Recipients (Cancer Patients, etc.)" at Hello Work is also effective. When a student begins 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 increase in the 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 in a single-person household develops cancer, it becomes essential to find allies—people they can rely on and to whom they can convey an SOS. It is necessary to prepare a system for support even when they are in poor physical condition, a network to obtain correct information, and sometimes measures for pet care, identity guarantees, and end-of-life planning. We recommend utilizing public consultation desks and consultation agencies such as Cancer Counseling and Support Centers.

(4) Challenges and initiatives in evaluating 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." In an era where the internet is overflowing with information, we believe it is necessary to evaluate that information. To enable patients to make decisions through information support, in our daily practice, we propose "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 counseling specialists and social workers are to "help organize information for choosing treatment methods, support patients in putting what they value into words, and connect those thoughts to the medical team." To enable individuals to choose a lifestyle and treatment that is 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."