MetARP 2024: Valerie and Mogana

MetARP Blog post

Moganalaxmi (Mogana) Reckdharajkumar - Researcher

What if you were diagnosed with cancer, and people around you said it was your fault or the result of bad karma? It's a miserable thing to say, right? Unfortunately, this is the reality for many men and women in India and Southeast Asian communities when they receive a cancer diagnosis.

I moved to Adelaide, Australia from India in 2019, just before the start of the COVID-19 pandemic, to undertake my master's studies. After completing my master's, I was keen on pursuing a PhD program. In 2022, I was fortunate to receive a scholarship from the University of Adelaide to begin my PhD research on breast cancer metastasis. Until my first year of PhD, I had never encountered anyone in my family or friends diagnosed with cancer. Then, my grandmother was diagnosed with breast cancer.

In India, cancer is surrounded by social taboos, and people are often shamed for their diagnosis. Much of this stems from religious beliefs, particularly the concept of karma in Hinduism. When someone is diagnosed with cancer, it is often perceived as a punishment for past sins. This stigma leads to isolation, depression, and discourages open discussions about the condition with loved ones and healthcare experts. When my grandmother was diagnosed, finding her a support group where she could share her experiences was incredibly challenging. Her journey inspired me to delve deeper into breast cancer research.

Attending the Biennial Congress meeting organized by the Metastasis Research Society (MRS) was a fantastic opportunity to learn about the latest research in metastasis. Being selected for the Metastasis Advocate Research Program (MetARP) and partnered with Valerie Fraser was a remarkable experience. This was my first 􀀁me engaging one-on-one with a patient advocate. Through our interactions, I learned about Valerie’s experience with breast cancer and we discussed health and drug policies in the USA. It was also a great opportunity to explain my project to her and receive her valuable feedback.

Though initially worried about asking too many personal questions, Valerie and the other patient advocates were incredibly open and friendly in sharing their experiences. I learned the importance of having advocates involved in research. We hope to maintain contact and continue sharing our experiences with research and policy changes.

Finally, I would like to thank Dr. Hillary Andrews and the Theresa Research Foundation for giving me this opportunity to participate in the program and represent both Australia and the Southeast Asian community.

Valerie Fraser - Advocate

Over 3 days in London, UK I had the amazing experience of attending the 20th Biennial Congress of the Metastasis Research Society and being able to soak in all of the incredible research presentations aimed at solving the complex puzzle of metastatic cancer. It was exciting to also meet up with a young cancer researcher, Moganalaxmi Reckdharajkumar, whom I was matched up with through the Metastasis Advocate Research Program (MetARP). Mogana is pursuing her PhD in breast cancer metastasis at the University of Adelaide in Australia and we found time throughout the Congress to discuss her work in the Tumor Microenvironment Laboratory of Research Professor Michael Samuel focused on cancer-associated fibroblasts and discovering how tumors co-opt them for tumorigenesis. It was fascinating to learn more about her work on fibroblasts and her passion to make an impact in metastatic cancer research for patients. As we shared our backgrounds and the driving forces that led us both into making an impact for patients with metastatic breast cancer, I learned from Mogana about the struggles her grandmother had experienced in India when diagnosed with breast cancer due to cultural stigma, how this experience had an impact on her and that this was her inspiration and driving force to become a breast cancer researcher.

Not unlike Mogana, I too had several family experiences that led me down the road to cancer advocacy which I too shared with Mogana. My father had a long battle with bladder cancer in the 1980s sparking my interest in cancer research and finding resources that could help him through this journey. I learned so much through his struggles and then several years later my mother would be diagnosed with breast cancer. Both of these life changing family events led me down the path to learning more about how cancer develops, grows and metastasizes. Shortly after breast cancer took my mom’s life, I myself would be told I was facing a most aggressive and deadly form of breast cancer, inflammatory. There was no doubt then that my life would take a significant change, as I knew how utilizing my research for my parents made a significant impact on their overall treatment and quality of life, and so I went into advocacy mode for myself, delving into the current research and studies which helped me in assembling a great care team and laid a foundation to making critically important treatment decisions. As I went through my own journey, I was greatly inspired to use what I had learned to help others along their path. This led me to using my knowledge and skills to become a trained and educated research advocate, so that I could work with cancer researchers to inspire them and be the patient voice for them as they develop their research projects and clinical trials and also be a resource, navigator and advocate voice for cancer patients as they traverse the ups and downs of the cancer journey. I have found that this is quite a rewarding experience for everyone.

Although the research paths of both Mogana and myself are quite different, we found that we have a common bond, through our heartfelt family experiences. We have learned to use our knowledge and skills to elevate and advance cancer research so as to have the greatest impact on moving forward more effective less toxic ways of treating and preventing cancer and elevating patients’ quality of life. I know we both inspired each other through sharing our unique stories and passions through our connection to the MetARP Program. I look forward to working with Mogana as she grows as a cancer researcher, learning about her discoveries with fibroblasts and supporting her research to make an impact for patients in the future.