Annual Report 2019
Rare Cancer Center
(NCCH) Akira Kawai, Yoshitaka Narita, Yasuji Miyakita, Shigenobu Suzuki, Seiichi Yoshimoto, Kan Yonemori, Tatsunori Shimoi, Kazuki Sudo, Yasushi Goto, Yoshitaka Honma, Takuji Okusaka, Chigusa Morizane, Susumu Hijioka, Motokiyo Komiyama, Aiko Maejima, Tomoyasu Kato, Mituya Ishikawa, Eisuke Kobayashi, Shintaro Iwata, Naoya Yamazaki, Kenjiro Namikawa, Koji Izutsu, Tatsuya Suzuki, Wataru Munakata, Chitose Ogawa, Ayumu Arakawa, Miyuki Sone, Hiroshi Igaki, Akihiko Yoshida, Noboru Yamamoto, Toshio Shimizu, Koichi Ichimura, Tadashi Kondo, Takahiro Higashi, Tomoko Takayama, Taro Shibata, Takuro Sakurai, Yoko Katoh,
(NCCHE) Naoto Gotohda, Tetsuo Akimoto, Ako Hosono, Toshihiko Doi, Yoichi Naito, Junya Ueno
Introduction
The Rare Cancer Center was established in June 2014 as a multidisciplinary team to take measures against the innate problems associated with rare cancers. Rare cancers are defined as those with an incidence < 6/100,000/year. Although each subtype of rare cancer is rare by itself, it accounts for up to 15% of all new cases diagnosed as cancer when the numbers of each subtype of rare cancer are combined. Information on rare cancers has been lacking to date and this background makes it difficult for clinicians to diagnose rare cancer correctly and treat patients adequately. Another problem is the lack of experienced expertise in the field of rare cancers.
The Team and What We Do
The Rare Cancer Center has been playing a central role in the management of rare cancers in the National Cancer Center (NCC).
The mission statements of the Rare Cancer Center are as follows.
I. Establishing a vital network for diagnosis and treatment for rare cancers.
II. Investigating the problems associated with rare cancers and taking up the issues and making proposals as medical professionals for rare cancers.
To enable the Rare Cancer Center to play its role, a total of 45 medical doctors, researchers, nurses and medical staff dealing with rare cancers have joined as members of the center. Each member of the Rare Cancer Center provides specialized and high-quality medical care to patients with rare cancers, and promotes researches of rare cancers by taking a multidisciplinary approach.
Research activities
1. Rare Cancer Center Conference
A regular meeting has been held between the Tsukiji and Kashiwa campuses to discuss issues in the treatment of rare cancers.
However, due to COVID-19, the meeting could not be held as planned this year. We will consider holding web-conferences in the future.
2. Website and Facebook
We have established a website of the Rare Cancer Center to transmit comprehensive, scientifically based, up-to-date unbiased information on rare cancers for patients and their families and health professionals fighting against rare cancers (https://www.ncc.go.jp/jp/rcc/index.html).
This year, we added 60 new entries and updated the content of the website. In addition, information is sent out daily on Facebook in order to provide timely information.
3. “Rare Cancer Meet the Expert” seminar
Since January 2017, physicians at the Rare Cancer Center have been holding seminars on rare cancers called “Rare Cancer Meet the Expert” for patients and their families twice a month, and video recordings of the seminars are distributed online.
Due to the impact of COVID-19, face-to-face seminars could not be held this year. So far, a total of 787 people have participated in 20 seminars, and the videos of the seminars have been viewed more than 20,000 times.
4. Seminars with patient advocacy groups
Together with 11 patient advocacy groups, 14 seminars on rare cancers were held.
5. Rare Cancer Master Class (seminar for medical professionals)
A Rare Cancer Master Class was held for medical professionals by inviting doctors from abroad. The first lecture was entitled “Pathology of Bone and Soft Tissue Tumors” and given by Prof. J. Bovee (Leiden University, The Netherlands), a renowned bone and soft tissue tumor pathologist. Due to the impact of COVID-19, only one lecture was held this year.
6. Rare Cancer Hotline
We have established the Rare Cancer Hotline to provide consultation for patients with rare cancers and their families over the telephone.
The number of new consultations in 2019 was 12,654 (Figure 1). The consulters lived in places ranging from Hokkaido to Okinawa, and by disease, sarcoma accounted for approximately 30%, followed by GIST, malignant melanoma, and cancer of unknown origin.
Figure 1. The number of consultations via Rare Cancer Hotline in 2019
7. Sarcoma Conference
A multidisciplinary conference is held to share treatment strategies for sarcoma, one of the typical rare cancers.
Due to the impact of COVID-19, only 10 conferences were held this year, but a total of 23 cases were discussed in the conferences.
8. Research on rare cancers
As a part of the project “Research on understanding of the current status of rare cancer treatment and development of basic infrastructure to improve the outcomes of rare cancer treatment”, the members of the Rare Cancer Center have conducted several research projects on the current status of rare cancer treatment, information dissemination and education.
We have been collaborating with the National Cancer Center Research Institute to establish patient-derived tumor xenografts and cell lines of rare cancers.
Future prospects
The Rare Cancer Center plays an important role in measures against rare cancers not only in the National Cancer Center but also throughout Japan. The Central Agency for Rare Cancers in Japan was assigned to the National Cancer Center in April 2018. The Rare Cancer Center will play the central role in the Agency.