According to the World Health Organization, cancer is one of the top two causes of death among people under the age of 70 years in most countries. 80% of the 15·2 million new cancer cases in 2015 needed one or more surgeries. In India, it is projected that nearly 1.5 million new cancer cases will be diagnosed per year by 2025. Access to safe and affordable surgical care, therefore, is crucial for patient care in otherwise fatal but often curable cancers.
Healthcare disparities only become worse in access to surgery between rural and urban areas in India. Similarly, nearly over 65% of the Indian people reside in rural areas that have only 5% of the country’s cancer care facilities. The COVID pandemic further worsened the access to surgical cancer care. “Because of the COVID lockdown, buses were not coming to our village. There was nobody to bring me to the hospital and I did not have the money to get a taxi,” told a 45 years old lady from rural Tamil Nadu who presented to the hospital emergency room in 2021 with a large ulcerated mass in the breast that had started as a small nodule 9 months ago.
The occurrence of breast cancer in particular has been steadily increasing and it is currently the most common cancer worldwide. Lack of awareness about cancer symptoms, the stigma associated with cancer, and poor family support are some of the barriers to care. Breast cancer, which ideally should be picked up early by women themselves, is still diagnosed at late stages in India. This coupled with the stigma associated with cancer further prevents people from seeking care as they try to hide the complaints as much as possible.
“A young lady in her early thirties who was a mother of two children came to our outpatient clinic with a large breast mass. She had ignored it till now as it was not painful. She came to us now, as it had grown rapidly and was no longer conceivable. Although her husband was supportive, ill-treatment by the rest of the family caused significant mental and emotional stress in the patient who even contemplated suicide. By the time she presented to us removal of the entire breast was the only option as the tumor was very large. She underwent the surgery and received radiation therapy,” told her surgeon working in a private tertiary hospital in south India. However, the story doesn’t end here. Women often face stigma even after achieving a cancer cure due to body image distortion. Fortunately, in the case of this woman, she underwent a breast reconstruction surgery that helped in avoiding stigma.
Affordability is another significant barrier to obtaining cancer surgery. People often are forced to migrate to far-off cities in search of good quality cancer care which worsens the financial toxicity for their households. “I had to sell my house to raise funds for my surgery,” told Mr. Abdul (name changed), a school teacher from Bangladesh who traveled 1800 km to Vellore to get treated for colon cancer. “I had heard that the quality of treatment was better here which is why I traveled to India to get treated. I think that my chances of having a successful surgery and surviving are better here.”
Oftentimes, despite presenting early with symptoms, some patients suffer delays in appropriate care due to misdiagnosis. This could be explained by a lack of expertise and infrastructure, especially in resource-limited hospitals. “The doctor told me I had tuberculosis and so I started on tablets which I took for 6 months. However, my symptoms did not resolve and I kept getting worse,” told a middle-aged man who was later diagnosed to have metastatic lung cancer.
Similarly, stomach cancer can often present as heartburn which can be treated using over-the-counter antacids. “I developed acidity 12 months ago. Initially, I used to feel better after taking oral antacids. However, over the next few months, the acidity worsened and I felt tired all the time,” told Mr Swami (name changed) from rural Tamil Nadu. As his initial ultrasound was normal, he was not advised to do any further investigations. Once his symptoms worsened, the only option he had was to go to a medical college and hospital that was 4 hours away. After multiple trips to that hospital and getting an endoscopy, he was diagnosed to have stomach cancer. The cancer had already spread to the nearby organs, deteriorating his chances of survival.
Dr. Nandakumar Menon, the director of ASHWINI Gudalur Adivasi Hospital which caters to the tribal communities of the Nilgiris district in Tamil Nadu says that cancers of the esophagus and stomach are the leading cancers among the tribals of the town of Gudalur. “The closest healthcare facility to perform upper GI endoscopy is 5 hours away and it is impractical to refer patients all the way just for an endoscopy test.”
However, Gudalur Adivasi Hospital has successfully addressed this gap in the healthcare system.“We set up an endoscopy suite in our 50-bedded secondary care hospital way back in 2011. For over 10 years, diagnostic upper GI endoscopies have been performed in our hospital by trained junior doctors and we have been able to diagnose a significant number of patients with cancers of the esophagus and stomach,” told Dr Menon.
The overburdened healthcare systems further add to delays in treatment. Specialized cancer care in India has been centralized to only major cities like Chennai, Delhi, and Mumbai. Hospitals in these places have gained patients’ trust which makes them travel across the country to seek care. Dr. Rajat Raghunath, a colorectal surgeon at Christian Medical College, Vellore in India says that over 60% of the patients who arrive at his department travel over 1500 km to seek healthcare. “The conditions range from minor ailments like hemorrhoids to advanced cancers. However, there is a long waiting list for surgeries, and unfortunately, some of the patient’s disease worsens and becomes inoperable,” told Dr Raghunath.
According to Dr. Neerav Aruldas, a general surgeon practicing in the remote parts of the hilly northern state of Himachal Pradesh for the past 2 years, the health system has to diagnose its problems first. “As most cancers now require chemotherapy first, the operation is delayed as the overburdened public health systems are not able to provide timely chemotherapy. Often patients who were referred for chemotherapy return without receiving proper chemotherapy. The delay and incomplete treatment lead to progression of disease where only palliative care can be offered to the patient who possibly could have been cured of the disease” told Dr. Aruldas.
Setting up multiple cancer institutes in the northeastern part of the country is a welcome move to reduce geographic disparities in access to cancer surgeries. However, building new infrastructure solves only a tiny part of the puzzle. “We have to send biopsy samples to Delhi due to a shortage of pathologists in our area. It takes 3 weeks for us to receive the biopsy results” told Dr Aruldas.
Cancer patients are among the most vulnerable patient groups that cannot seek surgical care when they need it due to unaffordability, delayed diagnosis or misdiagnosis, disparities in the ability to reach the hospital, and stigma among other issues. These stories tell us that the fight against cancer is impossible and incomplete without integrating surgical care at all levels of the health system.
About the authors
Royson Dsouza is a Global health associate editor- of BMJ case reports, a fellow in the Department of Colorectal Surgery, Christian Medical College, Vellore, and a writer for Nivarana.
Parth Sharma is a physician, public health researcher, writer, fellow in the Lancet Citizens’ Commission on Reimagining India’s Health System, and the founder and lead editor of Nivarana.
Siddhesh Zadey is a Researcher at the Department of Surgery at Duke University School of Medicine, a Co-founding Director of a non-profit think-and-do tank - Association for Socially Applicable Research (ASAR) based in India, and the Chair of the SOTA Care in South Asia Working Group of the G4 Alliance.
Artwork by Janvi Bokoliya
This article was originally published in Nivarana.