‘Stage 4 cancer but despite drugs and side effects, I live, work and dance’

 ‘Stage 4 cancer but despite drugs and side effects, I live, work and dance’

 SURVIVOR STORIES  21.08.2024 

Urvashi Prasad I was fit and fine till around April 2022, when I started developing liver-related symptoms — loss of appetite, nausea, and so on. Soon, a low-grade fever started coming on. After many different tests to determine the cause, a PET scan and biopsy revealed it was an ALK-positive adenocarcinoma of the lung. In simpler terms, a kind of lung cancer. 

An ALK (anaplastic lymphoma kinase) gene is present in all of us but, for some unknown reason, it gets triggered in people who have a higher predisposition — especially women of South Asian and Southeast Asian descent. ALK-positive people are non-smokers and are often much younger than the average lung cancer patient. It’s not inherited, and I had certainly never heard of it before. I don’t think any of my doctors knew either because you can’t really screen it. You don’t expect something lung-related to happen to a non-smoker, that too, in their mid-thirties. My first reaction was shock that lasted for months. 

It was only when I was put on antidepressants that I started getting some of my daily life back. I don’t think the shock ever fully wears off. I still have moments when I’m wondering — is this the life I’m living? What’s unfortunate about this cancer is that it mostly gets diagnosed at stage four, when it has already spread quite a bit. It might have absolutely no symptoms in the beginning, but it’s an aggressive cancer and moves very quickly. Very little is understood about it. It’s not a doctor’s disease, it’s a researcher’s disease. We need a good amount of research — and that’s happening in certain parts of the western world — to identify why it happens to some people and not to others; and devise longterm treatment options. Right now, patients are put on these targeted oral drugs, but the cancer is very smart. It goes through some mutation and becomes resistant. 

With other lung cancers or cancers in general, you might have your regular chemotherapy, radiation or even surgery. But not for ALK-positive cancer. Currently, you only have limited drugs available. You can’t even keep switching once the cancer becomes resistant. Although the oral medicines help me lead a fairly normal and active life, there are many side effects  that require more drugs to manage. 

For instance, the meds immediately raised my cholesterol levels (I never had that issue before) and I had to be put on regular statins to balance that. The drugs also tend to raise your blood sugar, so you have to walk a lot. There is weight gain and fluid retention. It affects your joints — I’ve had knee issues for which I am getting physiotherapy. And then there are neurological effects — alternating between rage, anger and extreme sadness. You must also monitor the heart with regular ECG and ECHO tests. Even with all this, there’s a lot that I manage to do, whether it was my work as director of NITI Aayog, going out to meet people, doing public engagements, writing articles and so on. I also still dance, despite the weight gain and sleepless nights that the cocktail of drugs cause. Ultimately, what else do you do? If your choice is to want to live, then you have to find ways. People tell me the most bizarre and tone-deaf things — “How come you’ve not lost your hair?” or “How do you look so good?” or even “Doesn’t look like you have cancer.” 

Until you educate people, they will think they only gave you a compliment. That’s why I choose to write candidly about my disease on social media and other platforms. Being someone from public health, I am still working against the stigma associated with cancer treatment. People are still very hesitant to say we have this disease but it’s not our fault, and there’s nothing we could have done differently. Oncology today shouldn’t just be about giving someone chemo or radiation or a drug. It has to be more holistic care. I can still badger my oncologist and say, “You jolly well help me with XYX.” But what about other people? For a cancer patient, there’s so much that goes on mentally, emotionally, and with interpersonal relationships. 

For those in my peer group, this is a life they can’t relate to. My condition is incurable. It’s not over in five, six or nine months with chemotherapy. I have lost a lot of relationships in the bargain. Very few people have the ability to stand by someone who’s in a prolonged crisis