An interview with Ovarian Cancer Society Malaysia.
Tell us about how Ovarian Cancer Society Malaysia was started.
Ovarian Cancer Society Malaysia (OCSM) was formed through the participation of Malaysian ovarian cancer patients and survivors in the Every Woman Study, a global initiative that gathered insights from women living with ovarian cancer. Through our involvement, we realized that many women in Malaysia were facing similar challenges — limited awareness of ovarian cancer, late diagnosis, and a lack of dedicated support systems.
Recognizing this gap, a group of ovarian cancer survivors and advocates came together to establish OCSM. Our goal is to create a supportive community where patients, survivors, caregivers, and healthcare professionals can connect, share knowledge, and advocate for greater awareness and better support for those affected by ovarian cancer in Malaysia.
What are your main priorities and programs supporting those affected by ovarian cancer?
OCSM’s main objective is to raise awareness of ovarian cancer, which is the 5th most common cancer among women in Malaysia. Many women are still unfamiliar with its symptoms and risks, and we believe education and awareness are key to improving early detection and outcomes.
At the same time, we are committed to building a strong support system for ovarian cancer thrivers so that no woman feels alone in her journey. Beyond treatment, survivorship is an important phase that requires emotional, physical, and community support. Our programs focus on empowering women to navigate life after diagnosis and treatment, helping them regain confidence and continue living meaningful and fulfilling lives.
What are the most significant challenges facing your community when it comes to ovarian cancer?
One of the most significant challenges facing the ovarian cancer community in Malaysia is late diagnosis. The symptoms of ovarian cancer are often subtle and easily mistaken for common conditions such as bloating or digestive discomfort. As a result, many women are diagnosed at an
advanced stage of the disease.
Another challenge is the lack of specialized survivorship support for ovarian cancer patients. While treatment focuses on surgery and chemotherapy, many women struggle with long-term physical and emotional effects after treatment ends. Fatigue, reduced mobility, anxiety about recurrence, and the need to rebuild strength and confidence are common experiences.
In addition, access to newer treatments, genetic testing, and long-term survivorship programs can be limited for some patients. These challenges highlight the importance of strengthening awareness, advocacy, and patient support networks so that women affected by ovarian cancer in Malaysia receive the care and support they need throughout their journey.
Can you share an initiative or achievement that you are particularly proud of and that highlights the impact OCSM is having?
One initiative we are particularly proud of is the launch of ROAM – Returning Ovarian Cancer Survivors to Activities of Daily Living through Movement. ROAM was created to address an often-overlooked aspect of cancer recovery: helping survivors rebuild physical strength, mobility, and confidence after treatment.
Through guided functional movement exercises designed specifically for cancer survivors, ROAM supports women in gradually regaining their strength, flexibility, and overall well-being. Many participants have shared that the program has helped alleviate pain related to chemotherapy side effects while improving their physical resilience.
Beyond the physical benefits, ROAM has also created a powerful sense of community among ovarian cancer thrivers. It brings women together to support, encourage, and uplift one another as they navigate life after cancer. For us, ROAM represents more than just movement—it symbolizes resilience, recovery, and the belief that women living with ovarian cancer can continue to thrive and live full, meaningful lives.
OCSM believes that no woman should face ovarian cancer alone. Through awareness, advocacy, and survivor-led support, we hope to
strengthen the voice of ovarian cancer thrivers in Malaysia and ensure that they receive the care, understanding, and opportunities to thrive beyond their diagnosis. We are also grateful to be part of the global ovarian cancer community and value the work of the World Ovarian Cancer Coalition in bringing together organizations around the world to advance awareness, research, and patient support. We look forward to continued collaboration and working together to improve outcomes and quality of life for women affected by ovarian cancer globally.
