People in the generation called Adolescent and Young Adult (AYA) are defined as those who are aged between 15 and 39 in Japan. The definition is not universal but is various per each country. The features of the diseases as well as the demands and the desired supports for them can, in fact, split on whether the patient is in the Adolescent (A) generation who are younger, or in the Young Adult (YA) generation, who are a little more mature than the former.
According to the aggregated data collected from core cancer hospitals nationwide and published by the National Cancer Center Japan on the pediatric and AYA patients in the cancer registration for 2016 and 2017, 4,534 cases of the pediatric cancer (patients aged between 0 and 14) were reported for the 2 years (2,136 for 2016 and 2,398 for 2017), and 58,837 cases in the AYA generation (patients aged between 15 and 39) were reported for the same period of time (29,544 for 2016 and 29,293 for 2017).
Among the above-mentioned cases for the AYA generation, the types of cancer are reported to be ranging as follows: carcinoma (39%), cerebrospinal tumor (4.7%), germ-cell tumor (4.1%), malignant lymphoma (3.4%), leukemia (3.1%), soft tissue sarcoma (1.5%), bone and soft tissue sarcoma (0.6%), malignant melanoma (1.0%), and unspecified malignant neoplasm (intraepithelial cancer, etc.) (41.2%).
The cancer patients in the AYA generation are typified by taking their cancer treatments at various clinical departments, as the cancer types for these patients include orphan cancer as well as adult-type cancer developed in rather young patient. As there are no standard treatment methods currently established specifically for the patients in this generation, it is preferable that they take their cancer treatments based on the standard treatments for each type of cancer. On the other hand, there are some features in common among the patients in this generation with respect to the supportive therapy.
There are some common features among what is required in medicine for the AYA generation, but it is highly individualized in general, because the demands by people in different life stages can vary essentially. The wide-ranging demands include some for decision-making, reproduction, education, working, financial matter, or parenting. From a long-term point of view, controlling late complications can be quite crucial for them.
The SCC addressed these issues and allocated the ward specifically for the AYA generation in June, 2015, much earlier than other medical institutions in Japan. Since then, we have been supporting the cancer patients in the AYA generation when they are hospitalized in this ward.
Even so, it is still difficult to satisfy their various demands at one clinical department or institution. Therefore, there is a cooperation system involving other various clinical departments within the hospital, as well as involving other medical institutions having such special skills as reproductive medicine. When the issues are involved in education or working, another cooperation system communicating with other facilities than hospitals, such as schools, employers or companies, will be functioning. Also, utilizing such social resources as public unemployment office will be useful and necessary for satisfying their demands. At the Shizuoka Cancer Center, there are several windows for personal counseling including the Patient Support & Inquiries, where a multidisciplinary team stands by to support the patients. What is pursued here is the holistic care by such support teams for the pediatric-and-AYA-generation patients in addition to medical care provided at each clinical department.
There are many cancer patients in the parenting generation, who take their cancer treatments while raising their children. At the same time, there are their families trying to help and support them. At the Shizuoka Cancer Center, we try to aid their child-raising in the ways suited for each family, as the supports for the children are quite significant. We support the children to let them exercise their abilities voluntarily.
It is often the case that the cancer types for the AYA generation at the Shizuoka Cancer Center are rare ones. As the diagnosis can often be difficult to decide on, it is brought to the cancer board (for the comprehensive discussion by many clinical departments) and the therapeutic plan is decided there from the scientific point of view. Also common among the cancer patients in this generation is that their diseases often include hereditary tumors, and the proper gene profiling of the tumors by the multigene panel test will often be desired. We try to prepare explanations, which will be easy to understand for the patients and their families, as well as easy-to-access opportunities for consultation involving the specialists at the Clinical Cancer Genetics.
Public financial aid system for healthcare expenditures covering the pediatric chronic and specific diseases developed when a patient is 18 years old or younger is currently available, and the public support system for fertility preservation is also being developed per each prefecture. The staff including social workers at the Shizuoka Cancer Center will provide the information and help the patients use these systems.
There are many opportunities for information exchanges and communication among the cancer patients in the AYA generation. For example, there are groups of the cancer survivors in this generation as well as some support groups for the patients. Acquiring right information and right communication with people who can share the experiences will often provide positive effects. We always help the patients get access to such favorable opportunities.
