Rare tumour reveals a rarer person

Neuroendocrine tutors are now increasingly being detected during scans for other problems, which means that they are not as rare as we think.

Sanjay Nagral
May 1, 2020, Mumbai Mirror

There was very little similarity between them except being famous in their own way. One a rooted and simple Bollywood actor who essayed a variety of roles, many characters ordinary people, and crossed over to Hollywood with ease. The other, a famous whiz kid from Silicon Valley, a tech genius entrepreneur, ambitious and brash who wanted to be on top of his field. Both suffered from a rare ‘neuroendocrine’ tumour and succumbed to it in the prime of their life. Both openly talked about their disease. One faced it with equanimity and grace, the other with a certain trademark go-getter approach.

‘Neuroendocrine’ tumours are named after the type of cell they originate from. They are rare on the scale of other common tumours. When I trained as a surgeon, they were almost unknown. Now I see at least ten patients every year. It doesn’t imply that they have suddenly appeared on the scene. It means in the past we didn’t have the means to identify them.

So, what’s special about them? They can be very slow growing. They peculiarly remain small but simultaneously metastasise to other parts. They are now increasingly being detected during scans for other problems, which means they are not as rare as we think. It’s not uncommon for routine health check-ups to show small innocent neuroendocrine tumours. They are amenable to a wide variety of treatment modalities.

One important lesson these tumours have taught us is that unlike usual types of cancer, it is not just the size and spread that determines prognosis but the tumour’s ‘biology’ or the innate level of aggression. Thus you can have a large neuroendocrine tumour with spread to other parts of the body remaining idle for years. Some survive long, even with tumours riddling their body. Steve Jobs survived eight years.

When first informed about his diagnosis, Jobs chose to use alternative therapy for a year, including acupuncture, diet therapy and special juices. When the tumour progressed, he underwent surgery. He came back to Apple continuing on his workaholic style to launch a series of new products. When it recurred in the liver after a few years, he underwent a transplant in what was a controversial decision. Transplantation in such cases is controversial because the tumours tend to come back with increased ferociousness.

We don’t have details on Irrfan’s precise tumour and treatment except that he underwent chemotherapy in London. We don’t need to. But Irrfan was courageous enough to go public in an industry where illnesses are usually kept secret. He also bounced back for some time after treatment to resume work. He approached his illness with composure much like some of his characters. It was almost as if his characters had given him an insight and wisdom to deal with his illness.

I have personally been a fan of the early Irrfan, partly because of the nature of the movies he chose to be in. Whether it was ‘Maqbool’, ‘The Namesake’, ‘Salaam Bombay’ or a lesserknown film called “Ek Doctor ki Maut’. Irrfan was the perfect fit for these movies which did not need a classical hero to tell their story. His piercing and yet lost look and the ability to underplay a character coincided with the arrival of a new realism in mainstream cinema, which challenged an audience addicted to a formula.

Irrfan and Jobs were people with a certain privilege. They could travel to any centre in the world to access treatment. For the large majority of our people, cancer means something else. From my time at Tata Memorial, I remember patients arriving from farflung corners of the country covering what were large fungating oral growths, which announced themselves by their odour before they entered, only to be tersely told to go back. Though things have changed, the diagnosis for the majority still means long travel, endless waits, financial ruin and a painful death. Someone like Irrfan would have been acutely aware of this reality.

When celebrities talk about their disease it is double edged. It can raise awareness about the disease like nothing else can. Their personal struggles inspire patients to fight on. Many have gone on to raise money for patients and even research. The Dutt family supported Tata Memorial Hospital in a big way after Nargis’s demise. But sometimes the stories of important people seeking care in centres abroad can be a rude reminder to many that there is a possible cure they cannot even dream of.

Rare tumours are a source of excitement and discovery for doctors and scientists for research, academic publications and career progression. But I wonder what this means to the person suffering. I think for them the feeling that they are being cared for and that they have meant something to people around them is far more important.

In the midst of another enormous crisis, our public space is full of welldeserved tributes to a great actor. But for someone who said “Life has no obligation to fulfil all your desires”, I wonder whether he would be uncomfortable with too much hagiography. We will remember Irrfan not for the rare tumour but as a rare person.