late effects

New Therapies, New Late Effects – Survivorship in the Age of Precision Medicine

Posted on November 22, 2018 by Jamie Irvine

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Presentation Description:
Overall survival rates for childhood cancer survivors exceed 80%, thanks to new therapies and the evolution of pediatric cancer clinical trials. Chemotherapy and radiotherapy, in general, have the potential to cause late effects in childhood cancer survivors. The latest data show that 95% of survivors will have a late effect related to their cancer treatment by age 45 and of those, 80% will have a serious/disabling or life threatening condition. Screening for late effects in survivors is generally guided by the Children’s Oncology Group (COG) long term follow up guidelines. These guidelines provide evidenced based rationale for screening. The 5th version of these guidelines will be released in October 2018. Each guideline has been reviewed by a panel of experts to ensure the recommendations are in keeping with current evidence. Modern therapies such as monoclonal antibodies and tyrosine kinase inhibitors are increasingly being used in up front treatments, but the long term side effects of these agents at this time remain unknown. This presentation provides an overview of the major changes to the existing COG Long term follow up guidelines and highlights several new “late effect’” studies open in the COG. There will be a focus on the Late Effects after High Risk Neuroblastoma (LEARHN) study. This is one of the first protocols to prospectively study the late effects of modern neuroblastoma treatment which incorporates immunotherapy.

Speaker:
Eleanor Hendershot, RN(EC), MN, BScN, NP-Ped
Nurse Practitioner, Pediatric AfterCare Program
McMaster Children’s Hospital, Hamilton Health Science

Eleanor Hendershot completed her Master of Nursing in the Pediatric Acute Care Nurse Practitioner program at the University of Toronto in 2003. She received her BSCN from the University of Ottawa in 1994.

Eleanor has worked in pediatric oncology for the last 24 years starting at the Children’s Hospital of Eastern Ontario, then moving to The Hospital for Sick Children and currently works at McMaster Children’s Hospital. She is also cross appointed as adjunct lecturer in the Lawrence S. Bloomberg Faculty of Nursing at the University of Toronto. For the last 5 years, Eleanor has been working as a Nurse Practitioner in Aftercare initially at SickKids and Princess Margaret Hospital and now at McMaster.

Eleanor is a member of Outcomes and Survivorship steering committee in the Children’s Oncology Group. She has published multiple articles and book chapters on a variety of topics pertaining to pediatric oncology and pediatric oncology survivorship.

The Burden of Surviving Childhood Cancer – by Leanne Brown

Posted on June 13, 2018 by Kelly Zorzi

When I was 10 months old, I had persistent raspy breathing that everyone thought was a cold or allergies. Then one night I stopped breathing. I was rushed to the hospital, x-rayed and sent to The Hospital for Sick Children where they found a tumour the size of a grapefruit wrapped around two vertebrae in my upper spine—neuroblastoma was the diagnosis. I was rushed into surgery to remove the tumour and a large portion of muscle and tissue out of my back. My chances of surviving were 5 – 10% and my parents were told that if I DID survive, I would likely be paralyzed.

Leanne Brown with her children Greg and Beth

After cobalt radiation treatment, I went into remission at 18 months old and never relapsed. As I grew up, my doctors explained to me the side effects I was experiencing, those that might still come, my inability to have children, and the fact that my life expectancy was not the same as my peers. For the rest of my life, cancer and I will walk together in some form. That is my basic medical story, but it is not my whole story. While most childhood cancer survivors become well adjusted adults, many have an affected sense of self and some may experience depression, anxiety or other mental health issues.

Watch Straight Talk: Emotional Health After Childhood Cancer

One rarely discussed issue is something I have been through, and most survivors I know have experienced: survivor guilt. It’s a hard concept to wrap your head around until you understand where it originates.

Growing up, many of the children who were treated alongside me did not survive; including a
friend who was very special to me. For a long time after he passed I felt guilty for living, in fact
I still do sometimes when another life is lost. But the feelings of responsibility don’t end there.
Logical or not, many survivors feel guilty for the sacrifices our parents had to make, for the social
and emotional challenges our siblings went through, and even for being who we are, rather
than super humans doing extraordinary things. There is a burden to be better than “normal.”

As an adult, the feelings have never really gone away, but I have found ways to deal with them.
As a teenager and young adult, the guilt, coupled with the deeper understanding of my own
mortality and no one to relate to, was very isolating. That is why I try to address the topic with
other childhood cancer survivors, especially the younger generation. It has catalyzed many
interesting and emotional conversations, and in some cases, provided a space for people to
voice something they have never said aloud before.

Leanne Brown has been a speaker at the biannual POGO Survivor Conference and POGO AfterCare Education Day. Although she was told she would never have the physical strength and endurance of her peers, she embraces life by skiing, running, hiking, camping and canoeing, and she even completed a half marathon in 2013. Leanne lives with her two children in Ottawa.

When Your Tumour Leaves You With a Disability – by Noah Severino

Posted on April 4, 2018 by Kelly Zorzi

Noah Severino

I was 9 years old when I was diagnosed with late stage rhabdomyosarcoma. I had been experiencing chronic fatigue, migraines and tingling in my face for over two months, but none of the doctors could find anything wrong. Then one morning I woke up and I was completely blind in my right eye.

The ophthalmologist found no reason for me to lose my sight so he ordered an emergency CT scan. I remember the pediatrician on call coming out of the viewing room and saying to my mom, “You need to get to SickKids Hospital right now; they are waiting for you.”

A tumour had basically encapsulated my brain and was moving; the doctors thought I was 24 – 48 hours away from dying. They started me on emergency chemo and radiation before they could even put a name to what I had. All in all, I had a total of 50 rounds of chemo and 30 rounds of radiation over the course of a year. Radiation caused third-degree burns on my cheek, head, in my mouth and down my esophagus, so eating was a real challenge. I used to drink coffee creamers to keep my weight up and because my mouth was so raw.

My tumour was so aggressive and advanced when I was diagnosed, that doctors wondered whether I would be able to overcome it. They wondered if I would be functional or articulate after such intense treatment, but here I am, 13 years later, a university graduate and am thankfully cancer-free.

Anyone who knows a childhood cancer survivor knows that life doesn’t just return to normal when you are declared cured. The tumour severed my optic nerve and I am completely blind in one eye. The radiation permanently damaged my thyroid and my pituitary gland, and for a long time my tear ducts and salivary glands were not functional. I still live with daily headaches that range from two to nine on the pain scale.

I have annual checkups at my POGO AfterCare Clinic. They are monitoring me for secondary cancers (because of all the radiation) and cardiac issues that may arise due to the type of chemotherapy I had. I get regular MRIs to look for brain tumours and I am thankful that my results have been clear.

As you can imagine, a brain tumour, radiation to the head and a year out of school can put a kid at a disadvantage academically.

I was luckier than other childhood cancer survivors in the same situation in that a neighbour who was a retired teacher offered to be my private tutor to help me catch up—I was actually working at a higher level than my peers at one point. Still, I find school challenging (albeit a welcome one) and use special accommodations, like a note taker to help supplement my own notes in case I experience writing fatigue or a migraine.

Watch Straight Talk: Assistive Technology after Childhood Cancer

Counsellors in POGO’s Successful Academic and Vocational Transition Initiative (SAVTI for short) work one-on-one with survivors like me to help us achieve our academic and employment goals. A HUGE challenge for me has been disclosing my disability when applying for a job. No one wants to hear that a potential employee isn’t going to be able to type quickly, or won’t show up for work some days because of the headaches and chronic pain he has to deal with.

SAVTI is funded entirely by donations from the private sector. DONATE TODAY.

Between some of the workshops I have attended, help from my family and talking one-on-one with my counsellor, I have the tools I need to advocate for myself. It is very intimidating to put yourself out there, but I have gained the confidence I need to say, “I’m a childhood cancer survivor and as a result of my treatments this is what I have to deal with, but I promise you I’m a hard worker and you will be happy with what I can do.”

I can honestly say that if I could go back in time and take away my cancer experience, I don’t think I would. It has shaped my goals and made me who I am. My hope is to one day work with other childhood cancer survivors or kids with serious illnesses to help them grow and be the best they can be.

Through his work with his POGO Counsellor, Noah received a number of post-secondary scholarships and graduated with a (Honours) Bachelor of Humanities from Carleton University. Noah was recently accepted into the Masters of Management program at the Schulich School of Business at York University.

Todd Cunningham, PhD: Assistive Technology After Childhood Cancer

Posted on April 4, 2018 by Kelly Zorzi

Assistive Technology After Childhood Cancer

While the survival rate for childhood cancer is 82%, approximately 60% of these young survivors will experience long-term effects because of their cancer or treatment. The late effects that affect the brain and learning and cognition can range from mild to severe and can include cognitive impairment resulting in learning difficulties that can affect a young person’s success at school or in the workplace. Assistive technology is any technology that allows someone to use their natural strengths to overcome an area of weakness. Todd Cunningham explains that new technology exists to help with cognition, like reading and identifying important parts of the text. With artificial intelligence, the software can analyze a document and highlight the most important bits of information for the reader, cuing them to pay attention to that passage. Assistive technology reduces the cognition load, allowing you to pay attention to what’s really important and relevant.

Todd Cunningham, PhD, C.Psych is a psychologist with Ontario Institute for Studies in Education, University of Toronto, Toronto, ON. He spoke at POGO’s 2013 Survivor Conference: Life after Childhood Cancer where he presented these and other ideas.

Download a PDF of Todd’s full presentation

Straight Talk about Childhood Cancer is POGO’s series of video shorts featuring the insights of experts whose leading-edge work impacts the care, treatment and quality of life of childhood cancer patients, survivors and their families.

Is Overprotective Parenting Linked to Anxiety and Depression?

Posted on January 30, 2018 by Kelly Zorzi

#BellLetsTalk #mentalhealthawareness

Ms. Amanda Sherman, BA, MA, PhD(c), discusses her POGO-funded research study.

Your study looked at overprotective and overcontrolling parenting. Can you give us some examples of these two parenting styles?
I would define overprotection as a style of parenting that does not allow the child or emerging adult to experience stressful things. These parents might try to reduce harm even where the situation doesn’t require it. An overprotective parent might call their child’s friends to solve a problem or insist on driving them to destinations where they can easily walk or ride a bike. It is excessive care. Overcontrolling parenting has more to do with discipline and getting a child to behave in a specific way. A parent might say, “You can’t go out tonight because I don’t like some of your friends.” It is excessive control.

What is non-productive coping?
Coping strategies that are not effective in helping that person feel better (worrying, swearing,
avoidance and isolation, for example) are nonproductive because they may lead to more distress and anxiety. In children, one correlate of the development of anxiety disorders is overprotective parenting.

Are childhood cancer survivors more at risk for depression and anxiety?
When looking at levels of depression, we did not find that our sample differed significantly from normative populations; but we did find that anxiety levels were markedly higher than the general population—participants’ scores on our questionnaire were within one standard deviation from the mean score of people with anxiety disorders. That was surprising to me and something we don’t yet know how to account for. Maybe for this population so much of their childhood was focused on getting better, that learning to cope with stress was less important than getting by and managing their illness. Now they are emerging adults and they are facing the potential late effects of their childhood disease, as well as regular life stresses, and perhaps they are less equipped to cope. These are hard questions to answer.

Amanda Sherman, BA, MA, PhD(c)

Ms. Amanda Sherman, BA, MA, PhD(c) was the recipient of the 2013 POGO Fellowship Award. Her research focused on maternal overprotection/overcontrol and its relationship to coping strategies, anxiety and depression in survivors of childhood cancer. Her study looked at 109 survivors aged 18-30 attending the POGO AfterCare Clinic at Princess Margaret Cancer Centre. POGO AfterCare Clinics monitor survivors at regular intervals so that potential long-term effects of treatment can be identified as early as possible.

You are doing your PhD in psychology. How did your career path lead you to study childhood cancer patients?
I did a practicum placement with Norma D’Agostino at Princess Margaret, where I was doing therapy exclusively with young adult survivors of childhood cancer. We noticed that problems with lack of autonomy, separating from parents and non-productive coping strategies kept coming up.

What can we take away from this research?
Now that we have this evidence that says overprotective parenting and anxiety are an issue in this population, we can target those parents and teach them how to socialize coping in their children. Even the oncologist can spend five minutes asking the parents and children a few targeted questions to
determine if there is a bigger issue, flag it, and refer the family to a psychologist to help them develop better coping skills.

What do you hope will come from your study?
This is preliminary research but even posing the question is opening doors and people are looking for potential issues when perhaps they weren’t looking for them before. Next steps from a research standpoint: our measure of overprotective and overcontrolling parenting needs to be validated and the study needs to be replicated with a non-cancer control group. I want to disseminate this research any way I can.

What does this POGO Fellowship Award do for your career?
This grant has allowed me to have time, space and community to do research. What I have enjoyed so much about POGO is how open minded everyone is about psychosocial issues, and psychosocial development. It has been nice to be accepted and encouraged for studying these kinds of issues, and working with medical professionals has helped provide a different perspective. It has been humbling, rewarding and encouraging at the same time.

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