Incidence patterns of rare cancer in southeast Asian and western Pacific countries (RARECAREnet Asia project): a study using population-based cancer registry data, 2011–2015

Abstract

Background

In Southeast Asia (SEA), the understanding of most rare cancers is limited, which sometimes leads to delays in diagnosis, treatment, and care. This study aimed to estimate for the first time the incidence of rare cancers in SEA using population-based cancer registry (PBCR) data from the 2011–2015 period.

Methods

This study used data from the nationwide PBCR of Malaysia and two PBCRs in northern Thailand in Chiang Mai and Lampang Cancer registries. The age-standardized incidence rate (ASR) per 100,000 person-year of the rare cancers included in the RARECAREnet list was calculated. All analyses were performed using SEER∗Stat (version 8.3.5). Cancers defined as rare by RARECAREnet in Europe were also rare in Thailand and Malaysia.

Findings

The ASR of some rare cancers in Thailand and Malaysia were greater than that in Japan, Korea, and Taiwan, including some pediatric cancers (pancreatoblastoma and odontogenic malignant tumors) in Malaysia, eye and adnexal cancer, and epithelial tumors of the penis in Thailand. ASR of nasopharyngeal cancer was higher in Thailand and Malaysia than in Japan and Korea but lower compared to Taiwan.

Interpretation

Although most rare cancers were also rare in Thailand and Malaysia, some cancers were not considered rare. However, the incidence of some rare cancers in Thailand and Malaysia were higher than that in Japan, Korea, and Taiwan. To enhance understanding, diagnosis, treatment, and care of rare cancers, reliable epidemiological data needs to be generated under the RARECAREnet Asia project by working with countries in Asia with high-quality PBCRs.

Funding

This study was supported by a UICC Yamagiwa-Yoshida Memorial International Cancer Study Grant (Award/Grant Number: YY/2022-1477) and Government of Japan Ministry of Health Labour and Welfare Grant numbers: 23EA1033, and was partially supported by Chiang Mai University, Thailand.