The phrase “cancer-free” brings immense relief to families dealing with childhood cancer in India. However, the challenges faced after treatment often remain inadequately documented. Recently, on the eve of International Childhood Cancer Day, significant findings emerged from India’s inaugural comprehensive survivorship program for childhood cancer. This research monitored over 5,400 children who successfully completed treatment across 20 medical centers in major cities, including Delhi, Mumbai, Chennai, Kolkata, and Bengaluru.

Initiative and Study Background

The Indian Childhood Cancer Survivourship study, which commenced in 2016 under the auspices of the Indian Paediatric Haematology Oncology Group, was published in ‘The Lancet Regional Health – Southeast Asia.’ Dr. Rachna Seth, who leads the oncology division at AIIMS, New Delhi, noted that the concept for this study was initiated in 2014 and operationalised in 2016. The data analysed spans from 2016 through 2024.

Survival Rates and Treatment Overview

The preliminary results of the study are promising. The five-year overall survival rate is recorded at 94.5%, with an event-free survival rate of 89.9%. Notably, two years after treatment, the survival rate increases to 98.2%. As of December 2024, follow-up data was reviewed for 5,140 children, revealing that 92% of them are alive and in remission. Among the diagnosed cases, leukemia represented 41%, making it the most frequent diagnosis in this group. Other cancers treated included Hodgkin lymphoma, bone tumors, and retinoblastoma.

The majority of the children involved received chemotherapy, with approximately 25% undergoing radiotherapy. Additionally, around one-third of the cohort required surgical interventions, and more than half received blood transfusions.

Long-Term Challenges for Survivours

Despite the high survival rates, Dr. Seth emphasised that survivors may encounter a range of long-term medical and psychosocial issues. Concerns may include fertility complications, cardiac dysfunction, cognitive challenges, the risk of relapse, and the potential for secondary cancers. “It is crucial that these late effects are systematically documented,” she stated. Previously, much of the knowledge about these issues was based on research from Western populations, leaving a gap in the understanding of the situation in India.

Expanding the Study’s Reach

The current analysis is based on data from 20 centers, but the number of participating centers has currently expanded to 35 or 36, enhancing the robustness of the findings. Dr. Seth remarked that this growth allows for a more accurate and localised baseline for ongoing research and understanding.

The median follow-up period from diagnosis stands at 3.9 years. The study also recorded that about 5.7% of the children experienced a relapse, while 4.9% did not survive through the follow-up phase. This research signifies a substantial step forward in comprehending the long-term outcomes of children treated for cancer in India.