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Significant regional disparities remain in the clinical management of hereditary tumors in Japan, particularly hereditary breast and ovarian cancer syndrome (HBOC). In recent years, insurance coverage for genetic testing, clinical surveillance, and risk-reducing surgery in cancer patients has expanded; however, a comprehensive, uniformly implemented system has not yet been established. For high-risk but unaffected individuals, substantial barriers to appropriate care persist, as surveillance methods such as contrast-enhanced breast MRI or preventive surgical interventions are available only as self-financed services. These challenges are even more pronounced in rural and island regions where access to specialists is limited. In the Kyushu–Okinawa region, cross-prefectural cooperation has been actively developed to address these issues. In addition to the efforts of the Japanese Organization of Hereditary Breast and Ovarian Cancer (JOHBOC), the Kyushu Familial Cancer Network (KFCN), established in 2015, has played an essential role. This network connects 42 facilities across eight prefectures, enabling standardized data collection, shared resources, and improved patient accessibility. Furthermore, the joint educational activities and workforce development initiatives of KFCN and the Kyushu–Okinawa branch of the Regional Activation Committee of the Japanese Society for Genetic Counseling are laying the foundation for sustainable genetic medicine, extending beyond oncology to include reproductive medicine, nursing, and primary care. This article highlights the progress and challenges observed in Nagasaki and the broader Kyushu–Okinawa region. By drawing on international guidelines, including those of the National Comprehensive Cancer Network (NCCN), the European Society for Medical Oncology (ESMO), and the American Society of Breast Surgeons (ASBrS), we identify areas requiring further development. These include the clinical implementation of multigene panel testing (MGPT), ethical considerations surrounding preimplantation genetic testing (PGT-M), and the need for multidisciplinary and cross-regional cooperation. Finally, we discuss future perspectives for establishing an equitable and patient-centered system of hereditary cancer care in Japan.

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Regional Cooperation and Equalization in Clinical Practice for Hereditary Tumor Syndrome

  • 章节

  • 发表日期：

    2026年

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  • Megumi Matsumoto,
  • Aya Tanaka,
  • Shoko Miura,
  • Kiyonori Miura,
  • Keitaro Matsumoto

摘要

Significant regional disparities remain in the clinical management of hereditary tumors in Japan, particularly hereditary breast and ovarian cancer syndrome (HBOC). In recent years, insurance coverage for genetic testing, clinical surveillance, and risk-reducing surgery in cancer patients has expanded; however, a comprehensive, uniformly implemented system has not yet been established. For high-risk but unaffected individuals, substantial barriers to appropriate care persist, as surveillance methods such as contrast-enhanced breast MRI or preventive surgical interventions are available only as self-financed services. These challenges are even more pronounced in rural and island regions where access to specialists is limited. In the Kyushu–Okinawa region, cross-prefectural cooperation has been actively developed to address these issues. In addition to the efforts of the Japanese Organization of Hereditary Breast and Ovarian Cancer (JOHBOC), the Kyushu Familial Cancer Network (KFCN), established in 2015, has played an essential role. This network connects 42 facilities across eight prefectures, enabling standardized data collection, shared resources, and improved patient accessibility. Furthermore, the joint educational activities and workforce development initiatives of KFCN and the Kyushu–Okinawa branch of the Regional Activation Committee of the Japanese Society for Genetic Counseling are laying the foundation for sustainable genetic medicine, extending beyond oncology to include reproductive medicine, nursing, and primary care. This article highlights the progress and challenges observed in Nagasaki and the broader Kyushu–Okinawa region. By drawing on international guidelines, including those of the National Comprehensive Cancer Network (NCCN), the European Society for Medical Oncology (ESMO), and the American Society of Breast Surgeons (ASBrS), we identify areas requiring further development. These include the clinical implementation of multigene panel testing (MGPT), ethical considerations surrounding preimplantation genetic testing (PGT-M), and the need for multidisciplinary and cross-regional cooperation. Finally, we discuss future perspectives for establishing an equitable and patient-centered system of hereditary cancer care in Japan.