The Stigma of Cancer

Apollo Doctors Talk

AB is a beautiful, happy and playful child of 5 years, with an enthusiasm about life that only innocence brings forth. One day, his parents take him to the doctor for fever which they suspect could be viral (like every other condition which we do not have a clue about). The doctor finds his liver and spleen to be enlarged, gets him investigated and evaluated. His parents come for follow up completely unmindful of the fact that their lives and their child’s life areprobably going to change forever. After some small talk and making them feel at ease, the doctor tells them what no parent would ever wish to hear your child has cancer!!!

Cancer! What does the word mean? Does it mean abnormal proliferation of cells as defined by medical text books? Does it mean a disease which can be potentially life threatening, yet can be treated and cured? Or does it mean that the family has faltered and now has no possible way to surpass the crisis?

Parents conclude that they are at fault and have let the child down. The mutual blame game begins in parallel to the fear of revealing the diagnosis to the child and to the rest of the world. What will the children think about themselves? Will they think less of themselves as compared to their peers? Will the child have a normal life if at all they are cured? Will the child marry and have a family? Will the elders in the family blame it on poor parenting? Or worse, will the child blame the parents and fail to re-establish a bond with them for the rest of their lives?

With technological advances, cancer is no longer an incurable disease. Several treatment modalities are available. The overall survival has increased manifold over the last few decades. It was way back in 1971 that the paper was published claiming that childhood leukaemia can be cured. Today, cure rates of up to 90-95% can be achieved for childhood acute lymphoblastic leukaemia. Why then is there still a social stigma that goes along with the diagnosis of cancer?

The diagnosis of cancer is seldom disclosed to children or discussed with them after completion of chemotherapy. In the department of Pediatric Hematology, Oncology and BMT at Apollo Speciality Hospital, we conducted a study to understand and estimate the extent of this stigma among our parents. A retrospective oral questionnaire was done on parents of children treated at our centre over a ten year period between 2002 and 2012. The children who were less than 7 years old during therapy and were in remission over 3 years were chosen as our study population. The parents were questioned on 3 parameters discussion of the treatment of cancer with the child, attitude towards follow up care and fear regarding long term side effects of the treatment.

A total of 59 parents were interviewed for the study. The diagnosis was Acute Lymphoblastic leukaemia in 37 children, Hodgkins lymphoma in 5 and non Hodgkins lymphoma in 10 children. Only two parents had discussed the diagnosis of cancer with their child (3.4%). Follow up was not offered for fear of sensitive questions from the children in 83% of children and only 10 children have been coming for regular annual follow up since discharge. All parents – 100% expressed fears about delayed side effects from the chemotherapy especially on pubertal growth and fertility but did not wish to discuss this issue with the child. Separate appointments were made to perform a chart review in 12% patients by the parents to address this issue of late side effects.

What does this tell us? There is a definite fear among parents with regards to mentioning the word cancer to their children. There are also concerns regarding long term outcomes. However there are several lacunae within the system on how best to deal with this situation.

Parents and the family needs to know and believe that there is HOPE! The diagnosis in itself does not mean the end of the road. Yes, there are a percentage of patients who do not respond to any treatment. However, there are also greater percentagesthat do. We need more COPE programs (Creating Opportunities for Parent Empowerment) which will help with disclosing the diagnosis to the child and help them deal with chemotherapy and side effects. Regular follow up post chemotherapy is essential in order to monitor for late side effects and provide early intervention. As children start growing up, the condition and whatit entails for the future can be gradually explained with the combined team of parents, doctors, counsellors and friends. It is also essential for parents to treat the child as any other; with a combination of care and discipline so as to ensure that the child has as much a normal childhood as possible.

In this day and age of internet, smart phones and social networking, it is naive to believe that the truth can be withheld from the child for long. Gone are the days when children could be cocooned and protected from the outside world. This is the age of fast track news and intense media exposure from all corners of life. Imagine the situation where the child finds out about his condition and treatment from an unknown source and feels betrayed by his loved ones for not having taken him into confidence. Open discussions with children and letting them know that there will always be someone to provide them a shoulder is necessary.

We have come a long way in this battle against cancer so much so that 1 in 1000 children will be a cancer survivor!We are currently in an era where there is tremendous research happening across the globe to improve outcomes and decrease late effects in childhood cancer. It is important to believe that cancer is curable and all our energymust be focussed on dealing with removing the stigma and preventing late side effects.