Ekta Rawat, a Hodgkin's Lymphoma childhood cancer survivor shares her recollections of navigating cancer treatment at the age of 6, discovering her cancer history in her teens and eventually finding purpose as a childhood cancer patient advocate.
There are moments in life that divide time into two parts—before and after. For me, that moment came long before I was old enough to understand what it meant.
My name is Ekta Rawat. I am a Hodgkin's Lymphoma childhood cancer survivor, a proud Mumbai girl, a healthcare professional, and an advocate for cancer survivors. Today, I dedicate my life to improving cancer care and ensuring that no patient or family has to walk this difficult journey alone. But my story began long before I knew what the word "cancer" even meant.
It all started with a small lump...
I was just six years old. It was 1993, during the tense days of the Hindu-Muslim riots in Mumbai. Like any other morning, my mother was getting me ready for school when she noticed a small lump on the right side of my neck. She immediately called my father and grandmother. Like many Indian grandmothers, mine believed it was just a swelling that would disappear with home remedies. She lovingly applied chandan (sandalwood) paste and assured my mother that it was nothing to worry about. But a mother's instinct is difficult to ignore. My mother had also noticed something else. My school teacher had been repeatedly telling her that I slept throughout class. That wasn't like me. She insisted my father take me to a doctor. That decision saved my life.
The diagnosis no parent wants to hear
The doctor examined me carefully and suspected tuberculosis. The TB test came back negative. I was referred to a local government hospital for further investigations. After undergoing surgery to remove the lump, the biopsy revealed something no family is ever prepared to hear. I had cancer. Further investigations showed that I had multiple lumps in my body, which determined the stage of my disease. One of the tests I remember most vividly was the bone marrow examination. Even today, decades later, I can still remember that pain. It remains the worst pain I have ever experienced. I couldn't walk properly for almost a week afterward.
As a six-year-old, I hated every hospital visit, every needle, every painful procedure. I didn't understand why all of this was happening to me. But while I was fighting a battle I couldn't comprehend, my parents were fighting another battle - one filled with fear, uncertainty, financial strain, and unimaginable emotional pain. Looking back today, I often wonder how they found the strength to smile in front of me every single day.
A childhood protected by silence
Once my diagnosis was confirmed, I was referred to Tata Memorial Hospital (TMH) for treatment. Chemotherapy became a part of my childhood. Even today, certain memories return like flashes, the smell of the hospital, the chemotherapy sessions, the endless injections, the procedures, the radiation therapy, and countless follow-up visits. The doctors, nurses, and my family became my world. Together, they carried me through treatment until one day, I completed it.
I don't remember every detail but I do remember feeling constantly nauseous, not wanting to eat or drink, painful arms from repeated injections, heat boils appearing on my body, and losing my hair. Even while undergoing treatment, I continued going to school. I attended my classes and, despite everything I was going through, I cleared every exam with flying colours. My teacher knew about my condition and was incredibly supportive. She helped me keep up with my studies and made sure that my illness did not become a reason for me to fall behind. Looking back, I think that was very important. School gave me a sense of normalcy. For a few hours, I wasn't a patient. I was simply Ekta, the little girl who had to study, play and go to the next class like everyone else.
But there was one thing I still didn't know. No one ever told me I had cancer. I belonged to a different era. There was no Google. No smartphones. No internet. Even though I regularly visited the hospital for follow-ups, I never questioned why. Surprisingly, neither the doctors nor my family ever used the word "cancer" in front of me. My parents wanted to protect me. Perhaps they believed that silence would protect my innocence.
The day my world changed again
I was nineteen years old. One ordinary day, while accompanying my mother to a local clinic for her fever, my eyes fell upon a health education chart hanging on the wall. It described the symptoms and treatment of Cancer. As I continued reading, something inside me froze. The hospital name, the treatment, everything matched my own childhood memories. Questions flooded my mind. Could it be?
For days, I couldn't gather the courage to ask my parents. Finally, one evening, in a trembling voice, I asked my mother- "I saw a chart at the clinic. It mentioned cancer and Tata Memorial Hospital. You always take me there. What disease did I have?".
She immediately scolded me and asked me to go outside. I was frightened and quietly walked away. A little while later, my father called me. He sat me down and gently said, "You are an adult now. Listen carefully to what I am about to tell you and don't get depressed." Then came the words that changed my life. "Yes, you had cancer. But your treatment is over. You are completely cancer free." Everything around me stood still. For the first time in my life, I understood the battle I had survived.
Learning to live again
The truth shook me. I was a teenager trying to understand my identity, and suddenly I discovered that one of the biggest parts of my life had been hidden from me. I withdrew into myself. For months, I hardly spoke to anyone. I had hundreds of questions.
Why me?
Would it come back?
Would I live a normal life?
Could I dream like everyone else?
My parents had protected me during treatment. But now, the adult inside me wanted answers. Then, something unexpected happened. A letter arrived from Tata Memorial Hospital inviting childhood cancer survivors to a gathering during the SIOP (International Society of Pediatric Oncology) meeting in Mumbai. I asked my parents if I could attend. They said yes. That one decision transformed my life forever.
Finding my people
Walking into that room changed everything. For the first time, I wasn't alone. There were dozens of young people just like me. People who understood every scar. Every fear. Every hospital memory. Every silent question. I had finally found my tribe. Soon after, together with fellow survivors and our mentors, we founded UGAM – Victors of Childhood Cancer. UGAM didn't just give me friends. It gave me a purpose. I realised that survivorship is not simply about defeating cancer. It is about rebuilding your life. It is about helping others find hope. It is about becoming the person you once needed. That journey transformed me from a survivor into an advocate.
Life after cancer
Like many childhood cancer survivors, treatment left its marks. Because I received radiation to my chest, and hence, I experience shortness of breath. These reminders never make me feel weak. They remind me how far I have come. Today, I continue regular follow-ups at the Adult Cancer Survivor (ACT) Clinic at Tata Memorial Hospital. I believe in evidence-based medicine and remain grateful to the doctors who saved my life.
I experience shortness of breath, which can make everyday things a little more difficult. Living in Mumbai, where local trains are often the lifeline of the city, even a daily commute can sometimes feel like a challenge. Something as ordinary as travelling to work can require me to be more mindful of my energy and health. A colleague once told me that her cousin wanted to marry a cancer survivor. Instead of seeing her as a person who had overcome a difficult illness, my colleague reportedly said that he was foolish to marry someone who is sick, that there was no guarantee of her life, and that he was making his own life Hell. I remember how deeply that affected me. Not because I was ashamed of being a cancer survivor—but because I realized how little people understood the difference between a cancer patient and a cancer survivor.
That experience strengthened my belief that we need to talk about cancer openly. We need to challenge the fear, stigma and misconceptions surrounding it. I no longer want to hide my story.
The woman I became
Cancer changed many things. It taught me to value every sunrise. To take care of my health. To never postpone happiness. Most importantly, it taught me to love myself. Ironically, cancer also gave me my career. Today, I work in healthcare, focusing on patient navigation, cancer care delivery, and survivorship programs. Every patient I meet reminds me of the little girl I once was. Every family reminds me of my own parents. Helping them is no longer just my profession, its my life.
My family—the heroes behind my story
People often call me brave. But the real heroes are my parents and my sister. They carried my pain when I was too young to understand it. They hid their tears so I could smile. They protected my childhood, even if it meant carrying the burden alone. Like many middle-class Indian families, they were also afraid. Afraid of what society would say. Afraid that being known as "the girl who had cancer" would affect my future. So they chose silence. They rarely informed relatives. They never wanted me to be judged by my illness.
Years later, UGAM helped all of us overcome those fears. Today, I proudly speak about my cancer journey because stories have the power to change minds, reduce stigma, and give hope. Interestingly, life came full circle when my mother herself became a cancer survivor. We often say to each other with a smile, "Same pinch." Now, we understand each other's journey in a way few people can.
What I want every parent to know
Please don't let fear make your children fragile. Protect them, but also prepare them. Help them become strong enough to face life with confidence. Children are far more resilient than we imagine.
What I want every patient to know
Cancer is not the end of your story. It is the beginning of a new chapter. Find yourself. Trust yourself. Build yourself. Be fearless. You are stronger than you know. Become the ambassador of your own life.
As a survivor, I remain mindful of my long-term health and never miss my follow-up appointments. But I refuse to let fear define my future. Instead, I choose a purpose. I choose gratitude. I choose service. My dream is simple. A world where every child with cancer receives timely diagnosis, quality treatment, compassionate care, and the opportunity not just to survive but to truly live.
Because I know what is possible. I am living proof. I am Ekta Rawat. I survived childhood cancer.
But more importantly...I learned how to live beyond it.
Achievements
- Childhood Cancer Survivor and nationally recognized cancer survivorship advocate since 15 years.
- Senior Manager –Karkinos Healthcare, leading patient navigation and digital health initiatives.
- Co-founder of UGAM – Victors of Childhood Cancer (ICS), a survivor-led support group empowering Childhood Cancer Survivors since 2009.
- Presented the paper "UGAM – Victors of Childhood Cancer: An Empowerment to Rise with Education" at the International Society of Paediatric Oncology (SIOP), Hong Kong (2013).
- Survivor’s Panelist, Indian Cancer Congress, Mumbai (2023)
- Trainee Patient Advocate- Certified PARC Training (NCG and PatientsEngage)
- Graduate of the Official Development Assistance (ODA) Academy by One Young World in partnership with the Bill & Melinda Gates Foundation.
