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Life after cancer: Issues of cancer survivorship

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The number of cancer survivors is increasing worldwide, every year. Yet there is very little information on physical, social, financial, mental aspects of life after cancer. M Neelam Kachhap, looks at cancer survivorship in a new light to find new models of service and care

Cancer survivorship landscape is shifting. The number of people winning the battle against cancer is increasing. It is estimated that approximately 25 million people are living as cancer survivors worldwide. Having come through the maze of detection, treatment and management of cancer, these patients continue to face problems. It is also estimated that a large number of these patients require both medical and non-medical care and our healthcare system at present does not have adequate approaches to deal with these issues.

Cancer survivors

“Chances of recurrence depend on stage of cancer, site and type of cancer.”
Dr A K Dewan
Medical Director and Chief of Head & Neck Surgery, Rajiv Gandhi Cancer Institute

The cancer survivors are those individuals who live beyond cancer diagnosis and its therapy. They could be living a disease-free life or a cancer-free life. According to the National Coalition for Cancer Survivorship, US, “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”

Agreeing Dr AK Dewan, Medical Director and Chief of Head & Neck Surgery, Rajiv Gandhi Cancer Institute says, “Cancer survivor is someone who is living with or beyond cancer.”

The Indian survivors

There are many survivors in India. “The number of people conquering cancer is rising,” says Dr V Shanta, Chairman, Cancer Institute (WIA) Chennai. “It might surprise many to know that more than 4,000 patients, young and old, treated at the Cancer Institute (WIA), Chennai, for different cancers, have lived a normal life for more than 20 years after treatment,” she adds.

However, not everybody is as optimistic as Dr Shanta. Giving a different picture Dr BS Ajaikumar, Chairman, Healthcare Global (HCG), Bangalore says, “In our own study, we have found that 84 per cent of breast cancer patients treated at HCG, on average live up to six years and significant high number of patients live for long time.” “Survivors are increasing, leading good quality of life and cancer today is more of a chronic disease,” he adds.

Common cancers in India

“The social stigma around the disease (cancer) should be eradicated for the benefit the society.”
Dr Ajaikumar
Chairman,
Healthcare Global (HCG), Bangalore

Experts agree that lung, head and neck, cervix and breast are the common cancers seen in Indian population. “The common cancers in men are head and neck, lung, colorectal, prostate, and GI cancers and in women cervix, breast and GI cancers,” informs Dr Ajaikumar. “Cancer of the cervix has good survival rate and early stage diagnosis of breast cancer has good survival rate. There are good survival rates for head and neck cancers also. Poor survival is seen in lung cancers and advanced colorectal cancer cases,” he informs.

“Of the total diagnosed patients 25-30 per cent patients live a disease free life.”
Dr P K Das
Senior Consultant,
Oncology Indraprastha Apollo Hospitals

Concurring to his thoughts Dr P K Das, Senior Consultant, Oncology Indraprastha Apollo Hospitals says, “Among females, common cancers are cervix and uterus cancer (common in rural) and breast cancer (common in cities); in males, lung cancer, head and neck cancer.”

“Better survival rate is seen in lymphoma, gencell tumour, chronic leukaemia, paediatric cancers, and early stage breast cancer,” he adds.

Early detection is the key to survival

Cancer survival depends on early detection and therefore awareness plays a major role in survival. “Cancer is curable if detected early and treated early. Earlier the stage, better is the survival. Better survival is seen in some of childhood cancers (ALL, lymphoma, germ cell tumours) and few of adult cancers (CML, testicular cancer, breast cancer),” says Dr Dewan.

“Seventy per cent of cancer patients report late and majority of the time focus of treatment is palliation. But with modern methods of treatment, the cure rates have improved. About 40 per cent of all cancer patients may live beyond five years,” he adds.

Disease-free life

There is no set data on the number of patient living a disease-free life, but experts say a fraction of patients’ live disease-free life. However, it varies from individual-to-individual and the type of cancer. “Of the total diagnosed patients 25-30 per cent patients live a disease free life,” opines Dr Das.

“Each cancer has different survival rates and that is also based on the stage at which it is diagnosed.”
Dr Anil Heroor
Oncosurgeon, Fortis Hospital Mulund

On a different front, Dr Anil Heroor, Oncosurgeon, Fortis Hospital Mulund says, “Cancer is a group of diseases. Each cancer has different survival rates and that is also based on the stage at which it is diagnosed. If we go by rule of thumb then early stage cancers have a survival of 80-90 per cent and late stage cancers have a survival of 0-20 per cent.”

Enumerating yet another figure, Dr Ajaikumar says, “64 per cent of the patients diagnosed early and if treated properly can be disease free. In advanced stages it depends on the site of the cancer. 60 to 70 per cent of breast cancer patients live a disease free life and 30 to 40 per cent in lung cancer.”

The fear of recurrence

While living through cancer is a traumatic experience many patients fear recurrence. The period following treatment in which the risk of cancer recurring is relatively high is also very traumatic for patients.

“In early stage cancers, there are only 15 to 20 per cent chances of recurrence. In advanced stages it depends on organ specific and recurrence rate is 40 to 60 per cent. In most of the cases everything depends on the organ site and advanced stage of the disease,” informs Dr Ajaikumar.

Agreeing Dr Dewan informs, “Chances of recurrence depend on stage of cancer, site and type of cancer. For most solid tumours chances of recurrence are about 10 per cent – 20 per cent for stage I cancer and 90 per cent for stage IV disease. Some cancers are highly curable with newer chemotherapy drugs and targeted therapy. ALL, testicular tumours, Hodgkin’s disease and childhood cancers have high cure rates.”

Issues of cancer survivors

As soon as the topic of cancer survivors is broached one gets a feeling that they only have psychological problems. However, for some it’s a life defining experience and therefore they need 360 degree interventions. Experts believe that within the existing health care system, the cancer care models are largely focused on diagnostic methods, treatment aspects, cure, and disease failure and survival rates. There is very little research and intervention approaches for the after-effects of cancer diagnosis and treatments for an individual cancer patient. Cancer survivors are at increased risk of developing various physical and psychosocial conditions, which require to be identified and attended within the cancer care system. “Cancer survivors often have medical and psychological problems and needs. These needs vary from person to person and change over time,” informs Dr Dewan.

“Cancer survivors feel fatigue related to disease and treatment. Survivors may have various disabilities related to organs which have been removed like jaw or stomach, rectum or bladder removal. Chemotherapy, radiotherapy may affect cognitive function and growth of children. Survivors of childhood cancer have life expectancy 28 per cent shorter than general population,” he adds.

He further explains that some survivors even when cured struggle with the emotional trauma of having experienced a life–threatening disease. About 10 per cent of survivors develop major depressive disorders and others experience adjustment disorders. Many survivors are anxious about any minor symptom unrelated to cancer. Many of the survivors suffer from post traumatic stress disorder. They may face adjustment problems with spouse, other family members, as well as at working place.”

Cancer survivorship has been looked through the glass of psychosocial anomalies giving rise to the field of psychosocial oncology. “At HCG, we have psycho oncology department, which counsels the patients, motivates them and takes out the fear. We give a lot of importance to good counselling,” says Dr Ajaikumar.

Most of the hospitals in India have support groups. For example, Tata Memorial Hospital (TMH), Parel has After Completion of Therapy (ACT) clinic for childhood cancer survivors. However, increasing number of patients are living full-lives and therefore we need to look beyond the old concepts of adaptation or adjustment. As survivors are living longer productive lives, there is a need for new concepts, measures and interventions to maximise this outcome. Innovative models of cancer survivorship and care need to be advanced.

Acknowledging this Dr Dewan says, “A cancer survivor is a cancer fighter. He/she is a fighter after the diagnosis is established. Delhi must have a “survivorship centre” for working to help improve health outcome for cancer survivors. It may assist in development of services, as well as promoting research and education. It may address issues of employment, insurance, medical benefits to cancer survivors.”

The social stigma related to cancer can be fought if proper survivorship approaches are in place. “It’s a myth to call cancer a killer disease. It’s curable if diagnosed and treated at the right time and right way,” emphasises Dr Das.

Cancer can also be treated and people should not fear the disease. “Cancer should be now considered as a chronic, lifestyle disease. With advancements in technology and knowledge, we are able to deliver better medical outcomes and control the disease. The social stigma around the disease should be eradicated, which will benefit the society at large,” reiterates Dr Ajaikumar.

Today, there are advanced diagnostic and therapeutic options available for the management of cancer in our healthcare system, however very few approaches are available to deal with issues related to cancer survivorship.

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