When Preeti Phad looks in the mirror today, she no longer sees what’s missing—the eye she lost to cancer at age nine. It took nearly three decades to get here. The survivor of retinoblastoma, a rare childhood eye cancer, remembers a time when she refused to have her photograph taken. “People called me names. They stared at me in buses and trains. I began believing I was ugly. I stopped going to college because I couldn’t face people looking at me,” recalls the 38-year-old.
Phad’s cancer was diagnosed late. A school teacher first noticed a white reflex in her left eye during a sports class. By then, the tumour had advanced. Doctors had no option but to remove the eye. Within days, the cancer had spread to her neck, requiring chemotherapy and radiation. While the treatment saved her life, it also altered her appearance forever. Radiation affected the growth of the tissues around her eye socket. Even today, her left eyelid does not close completely. She has undergone multiple reconstructive procedures, including fat grafts and custom prosthetic fittings, but the effects of treatment remain visible. “When you are a teenager, you want to look like everyone else. I didn’t,” says Phad, a resident of Mumbai. “Every stare, every whisper chipped away at my confidence. I would ask, ‘Why me?’”
Kiran Salve, 33, from Thane’s Ulhasnagar, can relate to Phad’s past. She was diagnosed with cancer at 19 in her first year of graduation. She was also preparing for bank entrance exams then. She still remembers the day her life took a cancerous turn—January 4, 2013. She was at an intercollegiate art competition, where she won the first prize in poster painting. Cancer showed up, as fever, after the prize distribution ceremony. She consulted her family physician, who asked for a blood test. Her haemoglobin was dangerously low—3g/dl against a normal range of 12g/dl-16g/dl. It came as a shock as she had never felt anaemic, she says. She repeated the test but the result was the same. She was put on medication but that helped little and she was soon bedridden. “My life had come to a halt,” she recalls. “The haemoglobin then touched 2g/dl and I was put on ventilator.” Blood transfusion did improve her haemoglobin levels but it dropped again a few days later.
Then on April 4, 2013, Kiran’s ailment had a name—B-cell acute lymphoblastic leukaemia, a type of blood cancer. A bone marrow scan at Tata Memorial Hospital had solved that mystery. The next three years went by in treatment. “During treatment, everyone is caring and sympathetic,” she says. “But once that phase is over and you have recovered from cancer, life becomes way tougher. Every day is a struggle to compete with normal people, to feel like a normal person. Before cancer, I was an excellent student in academics and would grasp things very fast. But post cancer, I had major memory loss. I just could not remember the stuff I learnt; I would go blank.” She also had weakness and arthritis post treatment, she adds. The side effects of the treatment also impacted her work life. “When I applied for a job, I did not inform them that I was a cancer survivor,” says Kiran. “However, after a few months, upon confiding in my close colleagues, I noticed that their attitude towards me had changed. They began treating me differently and asked me to take rest at home, indicating that I could quit if I wanted to.”
Kiran was luckier in love though. She met her now husband Ratan Dhekale, 34, at Tata Memorial Hospital’s Leukaemia Lymphoma Foundation in 2018. Ratan was diagnosed with the same cancer as Kiran’s in 2011. He had to quit his graduation and engineering diploma midway. His cancer treatment also made it difficult to hold his job at a construction firm. “Cancer turned me into a worthless person,” recalls Ratan, now a social worker. “All the time went into treatment and its shadows kept lingering in forms of fatigue, weakness and depression.” It had also affected his libido, he says, and he had trouble finding a life partner. “Nobody wanted to marry their daughter to me,” he says. “Kiran and I found ourselves in the same boat and fell in love. The fact that both of us were cancer survivors helped because we both understood the challenges well and we did not have the guilt of spoiling some normal person’s life.”
That guilt is also a shadow that Ratan spoke about. It comes from having faced a deadly disease at an age when you are finding your footing in the world. Adolescence and young adulthood are among the most dynamic phases of life—young people are building their identities, pursuing education and careers, forming friendships and romantic relationships and imagining their future. And when cancer enters at this stage, it turns their world upside down. The adolescent and young adult (AYA) age group is a bridge between the paediatric and adult age groups, and fall in the 15 to 29 age bracket. Explaining why cancer can be uniquely disruptive in this age group, Dr Savita Goswami, psycho-oncologist, Tata Memorial Hospital, says a teenager may be preparing for board exams or planning for college when life suddenly becomes about hospitals, treatment and uncertainty. “Many feel as though nothing exists beyond hospital visits and the fear of death,” she says. “Coming to terms with such a drastic change takes time.” Additionally, adolescence is also the age when young people are seeking independence and want to make their own decisions. Restrictions imposed for treatment and safety can sometimes clash with their need for autonomy, say experts. “Completing treatment does not mean life immediately returns to normal,” says Goswami. “Many survivors have lost months or even years of education. Some continue to struggle with fatigue, cognitive difficulties or the long-term effects of treatment, making it challenging to return to studies or begin a career.”
Additionally, doctors note that body image is “extremely important” during adolescence. If treatment leaves visible changes such as an amputation, loss of an eye or other disfigurement, it can deeply affect self-esteem because this is also the stage when identity and peer acceptance matter the most.
Many young people also feel guilty that their illness was becoming a burden on the family. That is something that Ratan kept referring to in our conversation. “I know they have spent savings, travelled long distances for my treatment and sacrificed other responsibilities,” he says. “Instead of being able to support them, I worry that I have become dependent on them.”
And then there is the fear of a recurrence, of a life returning to a standstill yet again. “Every followup visit, every scan and every investigation triggers intense anxiety because we do not want to relive the experience of cancer,” says Kiran.
Ashwini Chorge, a patient of Goswami, was diagnosed with brain tumour when she was in class 9. She had persistent headaches that her family initially dismissed as vision problems. But a CT scan revealed a brain tumour. “Nobody in my family even knew what a brain tumour was,” she recalls. She underwent surgery and radiation, and later faced a recurrence that required further treatment. She was initially referred to the psycho-oncology department for cognitive assessment because radiation to the brain can affect memory and thinking. But Ashwini soon revealed deeper emotional struggles. Her school principal had initially refused to let her appear for her class 10 exams, fearing her prolonged absence would affect the school’s results. “My teachers stood by me,” says Ashwini. “They reminded the principal that I had always been a good student. My radiation oncologist even adjusted my treatment schedule and called me in on Saturdays so I could complete radiation before my board exams.” Ashwini says some classmates stopped visiting her because they believed cancer was infectious. “Some friends stopped talking to me,” she says. “They would say, ‘If you have cancer, we will get it too. Why should we come to your house?’” Ashwini battled fear, anxiety and uncertainty about her future. Recognising that her needs extended beyond medical care, the team enrolled her in survivor support groups, where she connected with other young cancer survivors and gradually rebuilt her confidence through activities that matched her artistic interests. And, she passed her board exams, finished her graduation, and is now an accountant.
Years later, as Ashwini's family began looking for marriage proposals, a new set of anxieties emerged. “Whenever the family disclosed her history of brain tumour, prospective matches became apprehensive,” says Goswami. “The family worried whether she would be accepted and even questioned whether marriage was the right step for her. These conversations take time and trust. They cannot be resolved in a five- or ten-minute consultation.”
Eventually, Ashwini married a distant cousin who accepted her medical history without hesitation. Radiation also affected her menstrual cycle years after treatment, raising concerns about fertility. After evaluation and treatment at Tata Memorial Hospital, doctors reassured her that pregnancy was possible. Her husband now accompanies her for followup appointments. “That support gives me confidence,” she says.
More than a decade after her diagnosis, Ashwini says surviving cancer required far more than medical treatment. “The doctors saved my life. But my family, teachers and psychologists helped me believe I could still have a future,” she says.
Support is crucial, especially during adolescence, and not everyone may find it. “When cancer strikes during teenage years, it can be an isolating experience,” says psychiatrist Dr Ruksheda Syeda. “Most young people have never encountered a serious illness among their peers, so there is often no shared reference point. Not only the patient, but also friends, teachers and even family members may struggle to know what to say or how to respond.”
Many families initially want to shield young people from the diagnosis, but that is rarely effective. Adolescents search online, understand medical terms and sense their parents’ anxiety. Open communication helps them cope much better than silence or secrecy, say experts. “What I have often seen is that young people are far more accepting than adults,” says Syeda. “Friends and peers usually respond with empathy and openness. The stigma and biases are more likely to come from adults around them than from people of their own age.”
Also, some young survivors develop extraordinary resilience, says Syeda. “They recognise that cancer is part of their story, but they do not allow it to become their entire identity,” says Syeda. “They want to study, build friendships, date, travel and experience life like any other young person. That determination to live fully can be remarkable.”
What has helped survivors in that goal is the advancements in treatment and care. “The good news is that paediatric cancer treatment has evolved significantly. Today, we use risk-adapted therapies, avoid radiation wherever possible, and when radiation is essential, we use newer technologies to minimise long-term side effects,” says Dr Amita Mahajan, head of paediatric oncology at Rajiv Gandhi Cancer Institute and Research Centre, New Delhi. “As a result, many children who survive cancer can go on to lead healthy lives with minimal treatment-related complications.”
Every child who survives cancer requires lifelong follow-up. That is a non-negotiable. “Through dedicated after-completion-of-treatment (ACT) clinics, we monitor them for potential late effects, intervene early when needed, and support their rehabilitation, from completing education and pursuing careers to preserving fertility and building relationships,” says Mahajan. “Survival is not the end of the journey, ensuring a good quality of life after cancer is equally important.”
Agrees Dr Venkata Rama Mohan Gollamudi, who leads Tata Memorial's ImPaCCT Foundation: “Our focus today is not only on curing children with cancer but also on helping them reintegrate into society. We want survivors to complete their education, find meaningful employment, maintain relationships and, where possible, have families of their own. Long-term survivorship care is essential to ensure that cancer does not define the rest of their lives.”
And that long-term care begins within the walls of ACT clinics. It is there that cancer survivors find companionship and rebuild confidence—something that was essential for Phad’s recovery. “For the first time, I realised I wasn’t alone,” she says. “I met people who had survived different cancers and were rebuilding their lives. That changed the way I looked at myself.”
Today, Phad leads UGAM, one of India's largest networks of childhood cancer survivors under the Indian Cancer Society. She mentors hundreds of young survivors and advocates for long-term survivorship care in India and abroad. Yet, she says, survivorship is about much more than being declared cancer-free. “People think treatment ends and life becomes normal. It doesn't. You continue living with the late effects, whether it is changes in appearance, fertility concerns, hearing loss, learning difficulties or simply rebuilding your confidence. Surviving cancer is one journey; learning to live after it is another.”
The total count of active teen and adolescent survivors is not captured under a single national census. As per a 2019 paper published in the Indian Journal of Medical and Paediatric Oncology, 54,538 young adults (15-29) were diagnosed with cancer. Cancers of the young account for 4.3 per cent to 6.26 per cent of the nation’s total cancer burden. The most frequently diagnosed cancers in this cohort include lymphomas, leukaemias, head and neck cancers and breast cancer. However, the number of those receiving psycho-social care is very low even today. As per a 2022 paper titled, ‘Adolescent and young adult cancers in India–Findings from the National Cancer Registry Programme’ by Prashant Mathur of the National Centre for Disease Informatics and Research, ICMR, a robust health care system and suitable AYA cancer care policies and programmes are strongly needed to improve disease outcomes and survival.
Sameena Bilgi, head of the patient programme, Gunvati Jagan Nath Kapoor Foundation, Mumbai, says there is a “huge gap in terms of psycho-social care available to adolescents and early teens who have cancer. And this is primarily because the burden of patients is very huge in our country and a lot more attention is given to paediatric cancer patients. Also, the percentage of this age group contracting cancers is very small. This is especially true for those who are outside the ambit of big cancer care hospitals.”
A 2023 paper in the International Journal of Community Medicine and Public Health points to the unmet need of psycho-oncology services for integrated cancer care in India. India has only three institutes that provide psycho-oncology degree courses: Adyar Cancer Institute, Chennai; Centre of Psycho-oncology for Education and Research, Bengaluru; and Tata Medical Center, Kolkata. For a country with a large demography and with rising incidence of cancer, this is definitely not a sufficient number. Hospitals in urban areas have started making attempts to incorporate psycho-oncology services in their cancer care programme. But owing to a lack of structured approach and in the absence of national data or guidelines, these isolated efforts will need significant leverage to cater to all cancer patients.
