Living (and dying) with cancerthehealthsite.com

Nearly half of those diagnosed with cancer eventually succumb to it. Though cure rates in childhood leukaemia, lymphomas and breast cancer have dramatically improved, the overall survival in many other cancers has not changed significantly in recent times. For those dying of cancer, the final outcome is seldom quick and painless. Terminal cancer is a slow and painful process which can challenge the spirit of the strongest and bravest of individuals. Also Read - 5 most common cancers among women

Even family and friends can be severely tested during this period and, for this reason, the concept of hospice care for managing the terminally ill cancer patient is popular in the West and other developed countries. Hospice care is not well established in India and many other developing countries. It is not profitable for the private sector, and the government sector lacks resources. Most hospitals in India do not encourage keeping terminal cancer patients. Also Read - Ovarian cancer: A frequent and urgent need to urinate could be a warning sign

These patients are ultimately managed in their respective homes by close family members, for whom the experience of watching them suffer and die can be quite shattering. Once it is established that the cancer is incurable and the patient’s lifespan limited, acceptance and a philosophical attitude can make the grim situation more tolerable. This chapter recounts how two families came to terms with watching a dear one living (and dying) with cancer. Also Read - This is how smoking, tobacco use make you more vulnerable to COVID-19

‘Dr Nayak, isn’t surgery the best option for oral cancer?’ was Vimla Sriram’s perplexed query when I was discussing her father’s treatment one Sunday morning. Thanks to the Internet, Vimla had done her homework well.

Normally I do not see patients on Sundays, but agreed to make an exception, as she seemed desperate on the phone to see me urgently. Her father had just flown in from Delhi after being diagnosed with an advanced stage of oral cancer and advised surgery there. As a senior financial advisor to a leading private hospital in New Delhi, Mr Rajaraman, after retiring as deputy director of the Indian Oil Corporation, had turned around the fortunes of this hospital. The surgical oncologist there did not want any delay in his treatment and recommended immediate surgery. However, Rajaraman’s younger daughter, Vimla, who was in Hyderabad, wanted him to see me for a second opinion. There I was on a Sunday morning, discussing the treatment options for advanced oral cancer with them. One look at Rajaraman and I knew that this was not ‘just another oral cancer’. Decades of chewing had resulted in a form of oral submucous fibrosispan somasevereala that I could barely get his mouth to open a few millimetres to visualize what was going on in his oral cavity. The bulging of the soft tissues where the cancer was ready to ulcerate into the cheek skin was evidence enough to suggest that he had an advanced stage of oral cancer. I was surprised to know that he still did not have a confirmed biopsy. I scheduled him for a biopsy, as well as an examination under anaesthesia, to better assess his disease and answer Vimla’s query regarding the option of surgery. (Read: My personal tryst with cancer)

In the operation theatre, I discovered that in addition to the obvious large cancer bulging into his cheek, Rajaraman had two other smaller cancers, one on his palate and the other on his opposite cheek. The rest of his oral cavity was also abnormal and appeared as if it could throw up more cancers any time. Rajaraman had multicentric oral cancer.

Multicentricity is a well- known feature of tobacco-induced oral cancers as the carcinogens in the tobacco affect the oral cavity in its entirety. Commonly, these cancers develop at different intervals of time and are called metachronous cancers. Rarely, they may all arise at the same time or within a short period of time (less than six months) from each other and are then called synchronous cancers. Synchronous multicentric cancers, like in Rajaraman’s case, are very challenging to manage, especially if they are located at a distance from each other. There is also the added risk that once these cancers are successfully treated, more cancers can develop either in the treatment area or outside it.

With this in mind, I recommended to Rajaraman that as major surgery at three different sites would have serious implications on his function and cosmesis, and since a favourable final outcome was also doubtful, it may be more sensible to opt for the alternative of chemoradiation. Though not the first option for advanced oral cancer, chemoradiation would avoid the morbidity of surgery. This treatment involved radiation therapy, which would be given five days a week, interspersed with weekly chemotherapy injections. The entire treatment would last for seven weeks. Though the chances of the chemoradiation curing all three cancers were remote, even if it made the smaller ones go away, the larger one could still be tackled by surgery later. Reluctantly, Rajaraman agreed to this approach.

The last few weeks of chemoradiation were pure torture for Rajaraman. I was not around during the initial part of his treatment as I was visiting a hospital in London. By the time I got back, a month later, he had lost considerable weight and was being fed through a tube that had been inserted into his nostril. He went through the whole exercise bravely, hoping for that proverbial ‘light at the end of the tunnel’. But it was not to be.

A PET scan two months after the completion of the treatment showed that all three cancers were still there, though significantly shrunken in size. In desperation, Rajaraman and his daughter implored me to operate and take them out. Having burnt my fingers badly in similar situations earlier, I dissuaded them. I even recommended a second opinion. However, Rajaraman declined, saying that he fully trusted my judgement and would go by it.

This kind of absolute faith in one’s doctor’s opinion can prove to be both advantageous and detrimental to the patient’s interests. While it may boost the doctor’s confidence and encourage him to try harder, it can also add more pressure and responsibility. Medicine is at best an inexact science and it is not uncommon for even experienced doctors to be wrong about a diagnosis or treatment plan. The same disease treated in a similar manner can produce different outcomes in different patients. The more so in cancer. (Read: How Deepa survived thyroid cancer)

Why this happens is a matter of conjecture. DNA profiling in the future may possibly provide some answers to this.

I do not think a second opinion would have changed anything in the case of Rajaraman, except for reiterating to him the fact that his cancer was indeed incurable. To Rajaraman’s credit, he was quick in coming to terms with his situation. His friends and well -meaning relatives advised him different options— homoeopathy, ayurveda, holistic medicine and what not, but Rajaraman had a scientific temperament. He had decided not to waste his precious last moments in these unprofitable ventures.

Rajaraman survived a full year after being diagnosed with incurable, terminal cancer. Much of this time he spent all by himself in his daughter’s house, which was in the same locality where I lived. I would sometimes see him walking around in the neighbourhood, accompanied by his daughter.

He listened to classical music, something that both he and his wife loved. Being a sports buff, he also watched cricket on television. He immersed himself in taking care of minor household chores to keep his mind occupied and had long chats with his daughter, with whom he had always shared a special bond. Never once in his interactions with his daughter did he give her the feeling that he was counting his last days or show any signs of mental turmoil. Self-pity was never his forte.

He had accepted his fate with grace and dignity. He visited the hospital only when necessary, mostly for pain control. Pain is the primary reason why terminal cancer is so fearsome. The management of pain in terminal cancer involves the use of painkillers in a graded manner. Milder, non -habit-forming painkillers are used initially when the pain is less intense and stronger narcotic analgesics, such as morphine or its derivatives, are used in the later stages.

Advanced oral cancer can cause destruction and distortion of the face to such an extent that the sight can be extremely unpleasant and disturbing. Naturally, most patients shun social interaction and prefer to keep to themselves. Hospice care at this stage, if available, can be a boon to both the patient and his family members. A hospice facility provides an atmosphere akin to that of a nursing home, and caters to the medical and nursing needs of terminal cancer patients. It gives them an opportunity to die with dignity and, at the same time, avoid burdening the family with the responsibility and pain of watching them die.

I had the opportunity to visit the Trinity hospice, situated in Clapham in southwest London, which is one of first hospice centres in the UK. The facility, partly funded by the NHS, provides the ‘end of life’ service to over 750,000 people living in central and southwest London. Visiting the centre made me realize that a hospital where patients came to spend their last few weeks or months could be bright and cheerful, with a professional and caring staff. Surprisingly, the patients who came there were not all in a terminal stage of cancer. Even patients who had advanced cancers and had difficulty coping with their pain and other symptom were admitted and discharged after the symptoms were managed.

Read more about causes, symptoms, diagnosis and treatment of oral cancer.

Rajaraman never required morphine and managed his pain with a minimum of painkillers. His visits to the hospital became infrequent. The last time he saw me was when he needed to have a feeding tube inserted into his nose as he was too weak to take anything by mouth. The end came two weeks later. He suddenly announced to his daughter that he wanted to be taken to the hospital. En route to the emergency, he collapsed in the car. Though initially resuscitated and shifted to the ICU, he passed away peacefully the next day.

His family was by his side when he died. (Read: 10 brave celebs who fought cancer)

Excerpt from Dr Umanath Nayak’s book ‘Enduring Cancer – Stories of Hope’. Dr Nayak is a Head and Neck Cancer surgeon, Apollo Cancer Hospitals, Hyderabad. His book may be purchased online through Flipkart and can also be downloaded on Amazon Kindle.

For more articles on diseases and conditions, check out our diseases & conditions section and for videos, check out our YouTube Channel.

Published : September 25, 2013 4:40 pm | Updated:June 13, 2014 2:43 pm

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