18 April,2021 08:10 AM IST | Mumbai | Jane Borges
Puneet Sachdeva, CEO and founder of AaM Press, was diagnosed with blood cancer in 2018. Though he was declared cancer-free in March 2020, the disease resurfaced. Pic/Ashish Raje
A shooting pain in the joints rarely ever raises an alarm, especially in an arthritis patient, for whom experiencing inflammation, stiffness, and muscle weakness is routine. So, when the 78-year-old mother of a Goa-based writer started complaining of joint aches in the thick of the Coronavirus lockdown last year, it made sense to wait it out. "We miscalculated⦠I think we all did," he now admits.
A year ago, at this time, Goa had a strict lockdown in place. "There was huge paranoia then; we were mostly ignorant about how the virus travelled," recalls the writer, who requested anonymity. The advice, very plainly put, was to not visit doctors at hospitals because there was a high risk of contracting COVID-19 within the premises. He tackled the joints pain with more physiotherapy and pain-killers.
Earlier this year, after her condition worsened, the family rushed the septuagenarian to a hospital. "To our shock, we discovered that she had a severely metastasised colon cancer, which had spread into the bones. This not just makes it painful and difficult for my mum to move, but given her age, provides no chance of cure. The doctor said she has months, rather than years. She is largely bed-ridden now, and mainly, doing physiotherapy. But, she is stuck in a gruelling grind of chemotherapy, which at the end of it promises no recovery." In hindsight, he feels his mental block towards hospitals during the lockdown was unwarranted. "I definitely regret not doing something about it earlier."
According to a report in Cancerworld.net, the number of patients registered at the city's Tata Memorial Hospital dropped by more than 25 per cent, from 82,500 in 2019 to less than 60,700 in 2020. The resultant delay in timely diagnosis has led to more advanced, incurable cases of cancer emerging, making treatment a huge task for oncologists. "[This year] At least 25-30 per cent of my patients came in at an advanced stage. I have had to politely tell them, âSorry, we cannot do anything more'. Some of these cases are inoperable or not salvageable. It's been that extreme," said Dr Deepak Parikh, director, Asian Cancer Institute Cumballa Hill Hospital. "Among them, at least 70 per cent cases were of people who had been feeling something wrong for nearly a year, but held back due to the pandemic."
Jaipur resident Vishnu Dutta's father Durga's surgery was delayed by nearly a year, due to the pandemic. He was to be operated on in March 2020, and when they returned for surgery in September, he tested positive for COVID-19. A rather mutilating surgery had to be performed in January 2021, which his doctor says could've been avoided
The challenge is not a new one for India. The obstacle posed by COVID-19 aside, India's cancer mortality rate has always been high, primarily because most cases are detected in advanced stages. A 2015 paper by Shripad D Banavali in the Indian Journal of Medical and Paediatric Ocology revealed that 68 per cent patients with cancer die of the disease in India, as compared with 33 per cent in the US. The pandemic, if anything, has made the crisis worse.
For Mira Road resident Winston Fernandes, 22, the pandemic proved to be a major hurdle, not just with diagnosis, but prognosis too. Winston's elder brother Vinifred Fernandes, 27, says that a month after the lockdown was imposed in March 2020, Winston began developing mild fever. "It would keep coming and going," he says. "He also started coughing incessantly. But apart from that there were no real symptoms." Had it not been for COVID-19, he says his mum, wouldn't have relied on over-the-counter cough medicines for two months. "When that didn't seem to help, we spoke to a chest specialist, who suggested that we get an X-ray. It revealed a small mass in the chest," says Vinifred. After running a few tests, including a CT Scan, biopsy and PET Scan, Winston was diagnosed with Stage IV Hodgkin's Lymphoma.
The family immediately began with the chemotherapy cycle, and his body was responding well to it, but right before the second round of therapy, he was diagnosed with COVID-19. The family was eventually advised to get a Haematopoietic Cell Transplant, a type of bone marrow surgery, which would give Winston a fighting chance to survive. The doctors successfully performed the transplant and Winston was discharged earlier this month.
Vishnu Dutta's 73-year-old father Durga Dutta's surgery was also delayed by nearly a year. Durga, who lives in Jaipur, has been battling oral cancer for over a decade. He was being treated by Dr Parikh in Mumbai, when the lockdown was announced. "Five years ago, my father had a major surgery, known otherwise as a commando procedure, on the left side of the mouth. He underwent a similar procedure on the other side, the following year in 2017," says Vishnu, who works in the finance sector. "Last year, two days before the lockdown, we came for a follow-up, and at the time, Dr Parikh had suggested a third surgery. But with news about the impeding lockdown, we thought it would be safer to return later. We have no family in Mumbai," he adds in a telephonic chat. It wasn't until August that they could fly down and surgery was fixed for September. Unfortunately, his father contracted COVID-19 and was in the ICU for nearly 20 days. "Around 80 per cent of his lungs were damaged. When nothing seemed to work, he was given Remdesivir," his son says.
Durga was discharged after an excruciating one month. Due to the extreme toll COVID-19 had taken on his health, no surgery happened that year. He finally returned in January this year. "But, the tumour had grown considerably by then, and hence, we had to do a more mutilating surgery," says Dr Parikh. Vishnu, 41, who lost his mother in his teens, says this experience has been his toughest yet. His father has started showing symptoms again. "We want to do follow-up, but
because of the current lockdown in Mumbai, it seems next to impossible." Vishnu believes that it is his father's will power alone that has helped see him through the
last one year.
With cancer, time is not just crucial, it is also a game-changer. When you broadly look at cancers, Stage I offers a 90 per cent survival chance, while Stage II, 75 per cent. Dr Parikh says, "The moment it goes to Stage III and IV, the percentage drops down to 40 and 20 per cent [respectively]. It means you have just a 50 per cent chance of survival. That's a quantum loss we are going to face, and the numbers [of cancer fatalities] are most likely to show up by the next year or so."
Dr Boman Dhabhar, consultant oncologist at Masina Hospital. speaks of a 75-year-old who recently came to him for a consultation. "The patient first started experiencing post-menopausal bleeding in March last year. Her doctor had suggested DNC [dilation and curettage, a procedure to remove tissue from inside the uterus], but she couldn't make up her mind. Then the lockdown happened, and the wait became indefinite. She panicked when she started bleeding heavily." Following a PET scan, she was diagnosed with endometrial cancer. The patient, he says, had to eventually undergo radiation, which was something she could have skipped, had she taken timely treatment. "Fortunately, for her, the cancer did not spread, but the nature of the disease is such that it grows and quickly. You cannot wait with blood cancer, for instance. It can get very aggressive. A month here and there, and everything is lost," says Dr Dhabhar.
What adds to the complexity is that its symptoms are subtle. In cases of breast cancer, a cancerous lump often doesn't hurt, and there's no fever, so people generally neglect it. A study by a regional healthcare centre in Kolkata has revealed that the average time for breast cancer diagnosis in a patient in India, is roughly about four months. A paper published in the South Asian Journal of Cancer in 2019, pointed out that a diagnostic delay of anywhere between three and six months for breast cancer, can lead to "poorer survival". "It's not for nothing that they say that the best time to treat cancer is âyesterday'," says Dr Anil Heroor, Head-Surgical Oncology, Fortis Hospital, Mulund and Hiranandani Hospital, Vashi. "But, cancer doesn't wait for COVID-19. It won't stop for the pandemic to end," says Professir Shailesh V Shrikhande, deputy director, Tata Memorial Hospital, Head of Cancer Surgery, Tata Memorial Centre, Mumbai.
Puneet Sachdeva is CEO-founder of AaM Press, a popular online news and views platform aimed at empowering the middle class. Diagnosed with what one of his doctors described as the "friendliest of blood cancers" in September 2018, Sachdeva, 46, a resident of Madh Island, was on heavy medication for nearly a year. After his condition got critical in 2019 during a work trip to Chandigarh, where his parents live, he decided to continue taking treatment at a government hospital there. "I had to constantly monitor my cancer factor, which is measured by a [genetic] test called BCR-ABL [that helps diagnose CML, a type of leukemia]. If my BCR-ABL report was below 1, it meant I was in the safe zone. When I was first diagnosed, it was 50. By the end 2019, it was somewhere around 7. This meant that the treatment was working. So, I went back to Mumbai, and returned to Chandigarh for a check-up on March 9 [2020]." That's when the doctor shared the good news with Sachdeva - his BCR-ABL was 0.4. He was almost cancer free. "For a cancer patient, it's like getting a new lease of life. It felt like a huge load was off my shoulders."
Back in Mumbai just before the lockdown, Sachdeva spent the next few home-bound months creating online content for his social media platform. A follow-up was due in July, but because he was already immunocompromised, he was wary of taking a flight. By September, his BCR-ABL also shot up to 13. "Meanwhile, I launched an online stock market programme, started taking care of my health and slept longer hours. This did help; my BCR-ABL dropped to 8 by November."
As Mumbai started opening up in December, Sachdeva says he considered going to Chandigarh one time too many. "But, I am paranoid. I can't afford to get COVID-19," he says. Only recently, he arranged for a driver to take him home. "And just then, the second wave hit us. Now, I have no idea when I can leave."
According to Dr Heroor, the logistical issues posed by the pandemic, have only compounded the problem. "While a lot of urban educated Indians were generally fearful about the virus, the difficulty in travelling and lack of public transport in the lockdown meant they were venturing out lesser." Cancer patients in the rural parts of the country were worse hit. "I had a patient, who knew she had a lump in the breast, but the family was finding it difficult to bring her from their village. In no time, her lump, which was the size of a lemon, spread to the entire breast. Her cancer had become advanced," he says.
At Tata Memorial Hospital in Dadar East, the objective was clear at the onset of the pandemic - cancer is an emergency and no surgeries can be delayed. The team even published a first-of-its-kind paper in June 2020, sharing the outcomes of elective cancer surgery conducted between March 23 and April 30, 2020. They had conducted 423 surgeries during that time - 371 without a COVID test and 84 per cent surgically complex procedures. There were no deaths.
"In 2019, we did about 8,641 major operations in the department of surgery. These operations went down to 6,002 in 2020. This means we did around 2,400 less surgeries," says Dr Shrikhande, the hospital's deputy director, while dipping into hospital records. "But, this is still a big number, because Tata is one of the few hospitals that chose to continue operating as a cancer hospital, rather than getting converted into a COVID hospital," he says.
Most private hospitals didn't have this choice. The situation has only worsened with the second wave. Dr Parikh says that a lot of their hospital resources were dedicated to COVID-19 patients. "Most cancer patients, post-operation, require ICU care for the first 48 to 72 hours, at least. So, there were instances where we had to check for bed availability before taking them in for surgery," he says, adding, "Right now too, it's likely that minimal resources will be dedicated to non-COVID-19 patients, so we are likely to be staring at another crisis, if things don't get better."
In a move that, however, came as a relief to many, oncologists at both public and private hospitals made themselves available for online video consultations. Dr Parikh says that this, however, isn't the best option, when you have to examine the operated area, or the tumour. "[Physical check-up] cannot be replaced by an online one, but we were trying to be there for them [patients], as much as possible," he says.
The financial burden on caregivers and families of cancer patients has only exacerbated in the pandemic.
Viji Venkatesh, region head, India and South Asia at The Max Foundation, which organises the annual Chai for Cancer to raise funds to support cancer survivors, says that even before the pandemic it took a lot of effort on the family's part to bring the patient to the hospital. "There is discrimination depending upon the age, and the gender of the patient. If the patient is a senior or a woman, families consider how expendable they are or not, before deciding whether to go ahead with the treatment," she shares. "With the pandemic, all these constraints multiplied to unimaginable limits, making it difficult for patients to access good treatment." Last year, Chai for Cancer was held virtually on the second Sunday of May, and though Venkatesh got the patients and doctors to hold âaddas' to create awareness, their collection dropped by 40 per cent. "Because we had back-up funds from the previous years, we didn't stop any of our work. But, I am determined to raise as much as possible this year."
Anita Peter, executive director, Cancer Patients Aid Association, faced another kind of problem too. "We used to have a cancer insurance policy for those registered with us. But, many of them submitted their claims so late due to the lockdown that it became tough for us to do anything. The rule is that you have to submit the policy within three months [of the treatment]." In January, the NGO had to pull a plug on their cancer policy. "It's one of the many activities that had to close down, because we didn't get enough donations." They had to direct their limited funds for other important cancer initiatives.
Venkatesh says that despite the impossible hurdles, medical practitioners have done their best. "Yes, it hasn't been easy for patients. But, doctors and hospitals have gone out on a limb to be there for them. They have changed their administrative capabilities and SOPs, and made themselves available 24x7 on phone, so that people suffer less."
2400
Dip in number of surgeries from 2019 to 2020 at Tata Memorial Hospital
. People need to make conscious lifestyle changes, especially when it comes to chewing tobacco and smoking, because they contribute significantly to some of the cancers today
. If you do show any kind of symptoms - like a swelling or ulceration - consult a doctor if it doesn't settle within a week or two
. When you sense something amiss, don't be in denial. Do not bury your head like an ostrich in the sand, and tell yourself, that you cannot get the disease
. Once diagnosed, never skip a follow-up. Like COVID-19, cancer also has doubling time, so you can't afford to wait, before it gets worse
Dr Deepak Parikh, director, Asian Cancer Institute Cumballa Hill Hospital
