Home Critical Illness Plan - Stories Of Amazing Survivors This cancer survivor is tackling stigma head on with a social platform for survivors
This cancer survivor is tackling stigma head on with a social platform for survivors

This cancer survivor is tackling stigma head on with a social platform for survivors

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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.”

Comment(20)

  1. Yes we don’t speak frankly, still we have stigma. I am also a survivor and under constant check up, but living to full and I know it that I will, it is not end.

  2. i am a cancer patient. under gone the operation. currently undergoing the chemo cycles. i am in my twilight zone of my life. but i am very positive that i will come over this health hazard. i pray to GOD, to give you a long and healthier life. let your social work in this regard may help the cancer patients to overcome their mental agony. regards.

  3. My father expired on 03.12.2015 from squamous cell carcinoma, i know the pain. i have seen the tears. its the worst time of mine in my life. i pray no body should get this. At the age of 54 he left us. at his last breathe he hold my hands and was crying. Doctors were helpless.

  4. Yes, I am also a cancer survivor. I had a tumour in the rectum. but it has not spread to other areas. I was operated upon. One set of doctors said i donot require any radiotheraphy or chemo. but the doctor who operarated suggested i complete 25 cycles of radio theraphy which I did. Though there are some inconveniences after removal of a part of my rectum, i am managing it and came to normal life. I am 62 running and still attend to my office on very regular basis. I have gained my lost weight and now I am ideal at 71 kgs.
    I remain positive and want to enjoy the full life.

  5. Very positive Sushanth, keep it up
    My father is also a cancer patient and fighting for a life at 76 years of his age.
    He has registered himself in Apollo Hospital Noida.
    Do not know how long he will be able to survive though his both the lungs are not supporting!

  6. My grandfather will cause with cancer a 15cm tumour in above ouesophagaus he doesn’t take a food only juices now he join in good Samaritan hospital radiotherapy treatment is conducting plz give me details how to cure that carcinoma

  7. My wife was diagnosed with breast cancer our surgeon suggested to have chemo first without looking at biopsy..petct..MRI..report ..the chemotherapy doctor of a very reputed hospital also without seeing Petct…MRI..report gave us admission… My wife expired 3 months later…. If she had removed the breast in first place my wife would have been alive today..negilegence of greedy doctors and the patient pays with her life…..

  8. Today cancer is curable by natural means. All you have to do is find out from the Internet. Google it or just go to Youtube and type out Natural Cure for cancer, you will get it all. They cures may take a while but you have to persevere and stick to it. There is no quick fix in natural cures. So help yourself with these cures not symptom medicines that only harm you.

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