Childhood cancer can be beaten research leading to more personalized treatments

Jordan Petingalo of Sault Ste Marie Ont was just shy of his third birthday when his parents realized something was wrong The toddler was experiencing flulike symptoms and within weeks was having trouble walking and was bothered by sound and light After several trips to the emergency room doctors ordered a CT scan Within hours Jordan was flown to Torontos Hospital for Sick Children where his parents were told the devastating news their little boy had a malignant tumour called medulloblastoma the most common childhood brain cancer

It shocked me says Lisa Petingalo Jordans mother It felt like it was not real like I was watching someone else get the bad news All I could do at the time was cry

Jordan spent six weeks in hospital for several rounds of radiation and chemotherapy He then went home where he continued chemotherapy at the local hospital and returned to the Hospital for Sick Children every few months for followup Given the type of cancer he had the treatments were intense and left him with serious side effects The nerves of his feet are damaged making walking and jumping difficult and hes small for his age He also has learning disabilities and attends a community school focusing on life skills

Today Jordan is a cheerful teenager who has a passion for the Pittsburgh Penguins and loves to watch hockey with his Mom Though his journey has been arduous he has been cancerfree for a decade

No one wants to hear he has cancer For parents its even more devastating watching their child suffer But childhood cancer can be beaten and many children go on to live happy and productive lives According to the Canadian Cancer Society 1310 Canadian children between birth and 19 years develop cancer annually with 82 of them surviving at least five years after diagnosis The most common types of cancer in children are leukemia cancers of the central nervous system and lymphoma

Research has led to new and more effective treatments for childhood cancers In 2010 the Canadian Cancer Society invested 37million in research to outsmart childhood cancer Among the discoveries is that medulloblastoma is not one but four different diseases a finding that could lead to more personalized treatments and allow some children to avoid the longlasting side effects of aggressive treatment

Usually the more treatments you give the higher the survival is but the lower the quality of life says Dr Michael Taylor a pediatric neurosurgeon at the Hospital for Sick Children and recipient of the Canadian Cancer Societys 2009 Young Investigator Award for his cancer research As things move forward were probably going to be giving less therapy to the children who have a wimpy medulloblastoma and experimental therapy to those who have a very aggressive medulloblastoma

Whatever treatment is necessary its important for everyone involved to adjust to the new normal David Brownstone a social worker with the Hospital for Sick Childrens pediatric brain tumour program says its challenging for parents to look after their sick child while also managing other childrens questions and expectations work responsibilities the home especially if the hospital is out of town and ongoing daytoday life stresses Those who have a support network through family friends or school are fortunate he adds Those who dont can tap into community programs such as hospital cancer units and summer camps to connect with and learn from other parents and children experiencing similar issues

Lisa Petingalo gets together with likeminded parents in her hometown several times a year and connects with others when she drops off Jordan at Camp Quality in Sudbury Ont every summer She says the Canadian Cancer Society has been a huge comfort by answering her many questions directing her to support groups and helping with flights hotel stays and taxis for Jordans hospital visits The family also participates in the Societys annual Relay for Life raising thousands of dollars for the cause Petingalo calls it therapeutic

Make sure you dont close yourself off she says Its very easy to get that way because youre situation becomes so different from the people and friends around you that you tend to pull away But you need that support and that involvement with everybody And speak to other families going through it Theyre the best people to release your fears and questions to and get their support Its so important to getting through this process

Contemporary cancer care involves the whole person not just the disease

Support for cancer patients must begin the minute they are told they may have the disease says psychosocial oncology specialist Margaret Fitch PhD head of oncology nursing at the Odette Cancer Centre at Torontos Sunnybrook Health Science Centre

All health care professionals need to acknowledge that receiving the diagnosis of a disease like cancer is a shock says Fitch the winner of the 2011 Canadian Cancer Societys 2011 Award for Excellence in Medicine and Health There will be emotional responses to that information so support of patients really has to start from the very moment there is suspicion of cancer and continue through the diagnostic period when they are having tests and finally a confirmed diagnosis

We must recognize that for most individuals hearing that they have cancer is a lifealtering moment

The goal of the health care professionals from that point forward should be to fulfill the patients most pressing needs and concerns she says

One person may be worried about finances the next about how to tell their children and another may be unsure how to manage from an emotional point of view Its really a matter of having conversations so that the professionals can identify where they can help and connect cancer patients to the kinds of services and programs that exist

Psychosocial oncology involves professionals from a wide range of disciplines including nursing psychology psychiatry and social work It is a customized wholeperson approach to cancer care and Fitch has earned widespread respect for her work which includes being codirector of the patient and family support program at the Odette Cancer Centre and an associate scientist at Sunnybrook Research Institute

Dr Fitch has dedicated her career to improving the patient experience says Donna Czukar the senior director of support programs for the Ontario division of the Canadian Cancer Society Her work has informed the Societys information and support programming and people who are living with cancer experience better quality of life as a result of her direct efforts in communities and institutions

A tool such as the supportivecare framework model that Dr Fitch has created is very important says Costa Rican psychologist Rodbin Campos who is in Canada to study the Canadian approach to psychosocial oncology I am here to learn how the team practises and I am finding it very helpful

Margaret Fitch is one of the architects of psychosocial oncology and she has contributed at every level for many years says social worker Diane Manii the clinical manager of the psychosocial oncology program at the Ottawa Hospital and a member of the board of the Canadian Association of Psychosocial Oncology Canada has one of the strongest psychosocial oncology networks because of people like her and her leadership Her focus has been particularly on navigation in the system as well as distress screening and moving the patient voice to a place that is loud and clear

In addition to focusing on emotional stress and anxiety some programs deal with physical issues says Fitch whose background is in nursing People could have pain nausea or fatigue which could be sources of distress so pain management would be included in their care

Its important to recognize the growing demand for this type of care from patients and families she says They have said the access to information and kind of support we give makes all the difference in their ability to cope with the disease Certainly the surgery chemotherapy and radiation are critically important but if you dont have the other you can end up feeling more suffering or bearing a grating burden

Patients want information They want to be able to plan How the information is presented is also important It depends on the individuals learning style coping style and personality so a clinician has to do an assessment up front about the patients readiness to hear detail and understand different concepts Its about having a conversation so that people get information relevant to their concerns

Date : 30 Mar, 2012
Reference : http://life.nationalpost.com/2012/03/29/childhood-cancer-can-be-beaten-research-leading-to-more-pers

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