This cancer survivor is tackling stigma head on with a social platform for survivors
When Sushanth Kodela arrived in Mumbai as a graduate student in 2011, he had no idea the seemingly innocuous symptoms he’d experienced for years would put his life on hold.
The 29-year-old computer science grad hails from Warangal district in Telangana, around 130 km from Hyderabad. Wanting to combine business with social issues, Sushanth enrolled for a Master’s degree in Social Entrepreneurship at the Tata Institute of Social Sciences (TISS), the only specialization of its kind in India.
“I was really a bad engineer,” he says with a laugh. “I never really had any passion toward computer software or engineering. I was mostly into social issues.”
For years, he’d experienced odd health problems, such as gynaecomastia (enlarged male breast tissue) and a painful mass in the breast.
“After I came here (Mumbai) my health started deteriorating,” says Sushanth.
A specialist put him on hormone replacement therapy while at TISS, but he continued to experience low-grade fever, weakness and lethargy through his first semester. He also lost 13 kg within that period.
He was eventually admitted to hospital, where doctors found a 21 cm tumour in the cortex of the adrenal gland (the outer tissue of the adrenal glands that produces important hormones such as adrenaline).
Although doctors couldn’t tell if the tumour was cancerous, as a precaution, they removed one kidney and the adrenal gland on top of it in December 2011.
“Being a rare case, obviously there’s not much expertise in the doctors. I was not exhibiting the usual symptoms of a carcinoma,” says Sushanth.
After the surgery, tests revealed the tumour was, in fact, adrenocortical carcinoma, an extremely rare form of cancer affecting only a few thousand people worldwide. At the time of surgery, Sushanth’s weight had dropped to 45 kg. It took him three to four months to recover.
“Post my surgery, all my symptoms got reversed,” he says. But psychologically, Sushanth entered a dark period. For a year, he believed his life was over after cancer.
“I refused to engage with my friends, my normal life or anything, because I was aloof, I was keeping to myself because I didn’t see any hope for my future,” he says.
After struggling with severe depression, he experienced an epiphany, brought about entirely by a change in attitude.
“I felt like, ‘What am I doing?,’” says Sushanth. “‘Maybe I’ll die, but how long can I live like this? I can’t keep on feeling sad about what has happened.’ So I had to move on.”
In 2013, he embarked on a solo cross-country train journey that took him to Ajmer, Jaipur, Pushkar, Delhi, Chandigarh, Dharamsala, and other regions for a month.
“I felt liberated after that journey,” he says. “You see you’re not the only person who’s going through such a tough period. And the moment you start realizing, you start looking at the bigger picture of life.”
He also went back to his studies, graduating in 2014. Since then he’s begun the most fulfilling journey of all – starting unCancer India, a social platform to connect cancer survivors.
“There’s nobody to guide people who are diagnosed with cancer,” says Sushanth. “Many people don’t know what to do after that.”
“Creating a network of cancer survivors across the country would be the way to solve this problem. They’ve gone through an experience already, they know what to expect, what’s coming, what all challenges to expect.”
Since graduation, Sushanth and a small team have dedicated his time solely to unCancer India. He’s supported by fellowships and some capital, but hopes to find more backers to build the platform. It’s been a challenge.
“Culture-wise Indians don’t like to talk about these things,” he says. “There are knowledge gaps, there are attitudes that are really far off. So although the intentions are right, people don’t know what advice to give to a newly diagnosed cancer patient. The patients don’t know what to ask or seek help for. Even if they do seek help, mostly it’s financial support.”
Fortunately, Sushanth has remained healthy. He undergoes regular radiological scans to ensure there is no new cancer, each costing almost Rs 25,000. He no longer needs one every quarter, but estimates he’s spent about Rs 3 lakh out of pocket on the scans in total – as much as the cost of surgery.
The financial impact of dealing with cancer is only one aspect UnCancer India hopes to address. The website is currently being reworked, with plans to add more content and bolster the social aspect of the site.
“Unless we have such a strong network of people, and they start talking about cancer, we can’t hope to bring about a change in this country, because all the social stigma associated with cancer, all the misconceptions will remain,” says Sushanth.
“The best people who can fight those perceptions are the survivors themselves,” he adds. “They should be very open about their disease, because you never know where you’ll get help from. There’s no point in hiding this disease.”