Urvashi Prasad was living a healthy life, with no signs of illness or visible symptoms, when she started experiencing liver-problem-related issues, like loss of appetite, nausea, weight loss, vomiting, and more. Several tests were conducted but none yielded any conclusive results. A biopsy and a PET scan suggested by a doctor diagnosed her with the stage four ALK-positive lung cancer. As a young non-smoker, Urvashi had never imagined in her wildest dreams that she’ll be diagnosed with lung cancer.
“For a few months after my diagnosis, I was in a state of complete shock,” said Urvashi, Director at NITI Aayog. “Stage four meant it was now in a metastatic stage, that is, the cancer had spread from its point of origin.”
According to the American Lung Association, ALK-positive lung cancer accounts for 4% of lung cancers globally. A study conducted in India, diagnosed 318 ALK-positive patients during November 2011–December 2017. The median age of these patients was 50 years (23-77 years); out of which 189 patients (59.4%) were male and 129 (41.6%) were female and only 57 (17.9%) were smokers.
OnlyMyHealth reached out to Dr Minit Jalan Shah, MBBS, MD, DM Medical Oncology (Gold Medallist), and Assistant Professor, Department of Medical Oncology and Hematology, Tata Memorial Hospital, Parel, Mumbai. His insights are under the ‘doctor speaks’ section in relevant parts of this article.
This feature is part of our series ‘Survivor Stories’, featuring people who’ve combatted or are living with various terminal diseases or ailments. We combine their personal experiences with inputs from experts and specialised doctors, ensuring that you get credible and authentic information.
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What is ALK-positive lung cancer?
ALK is a gene present in all of us, she explained. However, for some unknown reasons, the gene gets activated in some people, leading to them developing ALK-positive lung cancer. It is commonly referred to as ‘non-smokers cancer’ too.
Doctor Speaks:
Non-small Cell Lung Cancer (NSCLC) is the most common type of lung cancer accounting for 80-85% of all lung cancer cases. A number of genetic alterations, also called as mutations, result in the transformation of normal lung cells to cancer producing cells. These genetic alterations drive cancer cell growth leading to uncontrolled cell proliferation and independence from growth factors which normal cells depend on. ALK (Anaplastic Lymphoma Kinase) gene fusion, seen in 8-10% of NSCLC patients, is one such genetic alteration responsible for the transformation of normal lung cells to cancer producing cells. ALK fusion positive non-small cell lung cancers most commonly occur in young females (30-50 years) who are never or light smokers.
“This type of cancer almost exclusively happens to non-smokers. Women have a higher predisposition towards it. On top of this, those of Asian or South-Asian descent, have an even higher probability of getting it,” explained Urvashi. “Unfortunately for me, I happened to tick a lot of those boxes,” she added.
The treatments depend on individual patients and Urvashi is on targeted cell therapy, requiring her to take oral tablets every day, indefinitely.
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“This is a rare form of cancer, and unfortunately, there’s no cure for it. Even though we say it is rare, the numbers are increasing day-by-day, which is why we need more research around it,” she said. She added, “I am also aware that sometimes when people are on lifelong medications, the cancer becomes immune to that medication, and medicines need to be changed. To prolong the lifespan, more options need to be available, and thus, more research is definitely needed.”
Why the gene gets triggered and becomes “turned on” is still unknown altogether.
Doctor Speaks:
ALK positive NSCLC often presents as metastatic, i.e., it has spread beyond the lungs, in medical terms called as metastatic disease. When restricted to lungs, patients experience cough, shortening of breath, blood streaked sputum, and these symptoms usually do not settle with Over-the-Counter (OTC) medications. If the disease has spread to other organs, then symptoms will correspond to the affected organ. For example, when the disease spreads to the bones, it usually results in bone pain and fractures. Similarly, disease that has spread to the brain, it will cause headache, confusion, altered sensorium, or seizures.
In affected individuals, ALK gene alteration usually occurs as a new event in the lung cells and are not inherited from parents (rare exceptions possible), so there is no risk of transmission from parents to their children.
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Living With Cancer: The Mental Health Journey
Urvashi describes that when someone is diagnosed with cancer, the physical manifestations are all people talk about - symptoms, treatment, lifestyle, etc., and its mental health implications are often overlooked.
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She explained, “Socially, all your relationships and life as you know it, is completely turned on its head. I was unable to even understand what had hit me. I was in severe depression and of course had anxiety and even suicidal ideation. You’re hit with this out of the blue, and you’re suddenly staring at the prospect that your life could be over at any time! I did have to take anti-depressants, to even live life for whatever duration I have,” she added.
There is nothing about her diagnosis or her mental health medication that she’s ashamed of. “Social stigma is still a common problem, and often the reason people hesitate before seeking help. One does need help with their mental health when hit with such a tornado of a disease and seeking and accepting help is nothing to be ashamed of,” she added.
Doctor Speaks:
Diagnosis of cancer is said to be the most significant and life-changing event in the life of any individual. It brings along emotional stress, significant financial and caregiver burden, reduces morale, and in those with poor social support may even lead to anxiety and depression. 50-60% patients with NSCLC belong to the geriatric age group (In India, defined as those aged more than or equal to 60 years of age). Patients in the geriatric age group have a number of other vulnerabilities apart from cancer, such as significant comorbidities (diabetes mellitus, high blood pressure, cardiac problems), poor social support, higher rates of anxiety, cognitive dysfunction, and a number of other issues related to ageing (decreased vision, difficulty in urination and passing stools, and decreased hearing).
Urvashi also added that cancer treatments can be financially draining as well. The cost of medicines, multiple tests and scans, and doctor visits can become a significant burden. Even though she manages to cope with these expenses, she adds that someone from a lower socio-economic background would likely find it extremely hard. “Whether through private insurance or government policies, we need to do better, to provide support and care for cancer patients, especially for those from less privileged backgrounds,” she said.
Doctor Speaks:
If treated timely and appropriately, ALK fusion positive lung cancers have one of the best prognosis. There are a number of highly effective targeted therapies available today for these mutations. After three years of follow up, more than 60% patients are still deriving benefits and continue with the medication..
Living Life to the Fullest, Every Day
“All I try to do is live every day as well as I can and I just take it day by day. I have no long-term plans,” said Urvashi.
Apart from holding a prestigious post on the work front, Urvashi is also a trained Salsa, Bachata, and Belly dancer. She likes to keep her daily life as normal as possible, as constantly discussing her condition doesn’t really help her.
She mentions that society still seems to be uncomfortable around the disease, and people often don’t know what to say or what to do. “More than offering words of solace, we just need to be able to sit with people in their moments of grief and listen to them sans offering any judgement or solutions,” she added.
She states that the crux of friendship often lies in going through uncomfortable situations, sitting through the discomfort of not knowing or feeling helpless, as life isn’t always happy or rosy.
For primary caregivers, it’s an equally challenging battle. They may not be suffering physically, but the emotional and psychological impact of seeing a loved one go through something like this, is extremely mentally taxing. “I would tell caregivers to also take care of themselves. Their instincts tell them to do everything for one person, but they shouldn’t end up neglecting themselves,” she added.
Doctor Speaks:
Improvement in lung cancer molecular testing has led to a greater number of patients being diagnosed with ALK fusion positive NSCLC. As discussed previously, these mutations account for 8-10% of cases of metastatic NSCLC. Despite having one of the best prognosis and potential for long term control, the cost of targeted therapy is usually beyond reach for many such patients. Mobilising funds for timely initiation of treatment is a major task as the general condition of these patients deteriorates quickly without treatment. Improvement in patient assistance programmes and adequate government funding for procurement of these drugs would greatly benefit these patients. Also, financial support would be needed for performing molecular testing to enable more patients of NSCLC being detected with these mutations.
Social media platforms should create awareness about early identification of symptoms of lung cancer, this will enable identification of patients at an early (possibly curative) stage.