2015 POGO/Ooch Survivor Conference


On October 16-18, 2015, Camp Oochigeas and POGO presented the 3rd Life After Childhood Cancer Survivor Conference, a gathering for survivors of childhood cancer aged 19 and over.  More than 70 adult survivors of childhood cancer joined us at Camp Oochigeas in beautiful Muskoka for a weekend of connecting with other survivors, learning about managing their health and living well after childhood cancer.

Scroll down to view the Survivor Conference slide presentations that POGO was granted permission to share. If you are interested in a specific subject, click on a subject tag at the bottom of a post to view all the slides or videos that cover that subject.

NOTE: The content of each presentation captures the unedited information and opinions presented by the speaker. Please note that the information contained in the presentations was current at the time it was presented – there may be further information in subsequent literature. Listed speaker credentials were current at the time of presentation.

PLENARY SESSIONS

We Are All Storytellers: Discovering the Power of Knowing and Sharing Your Story
Michael Lang, MSc
Raymund Ong

Managing Your Fertility: Current Options, Practical Strategies
Sara R. Cohen, LL.B.
Karen Glass, MD, FRCS(C), FACOG

All in the Family:  Talking to Siblings about Childhood Cancer
Norma D’Agostino, Ph.D., C.Psych.
Shamata, sibling of childhood cancer survivor
Kevin Wang, MD/PhD student

Beyond Survival:  Emotional Equilibrium After Cancer
Christopher Recklitis, Ph.D., MPH

WORKSHOPS

Communicating with Family and Friends
Norma D’Agostino, Ph.D., C.Psych.

Common Workplace Issues:  Tools and Strategies
Lori Otte, BA, RRP

Genetic Testing for Cancer Survivors – Who and When
Nikki Parkinson, MSc, CGC


We Are All Storytellers: Discovering the Power of Knowing and Sharing Your Story


Presentation Description: 
"Facts lead to knowledge, but stories lead to wisdom." - Dr. Rachel Remen

Many childhood cancer survivors may not realize that they are living an amazing story or know how to begin telling it. This fun and interactive session drew on Mike Lang's and Raymund Ong's own personal experiences, as well as short digital stories and murals created by other cancer survivors, to explore the idea of storytelling as it relates to cancer and our lives in general. The goal of the session was to empower and inspire survivors to tell their stories so that the wisdom they have gained from their painful (and incredible) life journey can be shared with others who need it.

Telling Their Story: Video from the 2015 Survivor Conference
Five attendees of the 2015 Ooch/POGO Survivor Conference shared their perspectives on survivorship; the challenges and obstacles they faced, the effect their diagnoses had on their lives and how they've found hope, inspiration and fulfilment. These individuals shared their stories in the hopes that they will resonate with other childhood cancer survivors, who in turn may choose to tell their own.

Video Credit: Michael Lang, Survive & Thrive Expeditions Ltd.

Speakers:
Michael Lang, MSc
Executive Director, Survive & Thrive Cancer Programs
Specialist, Person Centred Care Integration, AHS CancerControl
Research Assistant, University of Calgary

Raymund Ong
Founder, C4 Murals


Managing Your Fertility: Current Options, Practical Strategies


VIEW THE PRESENTATIONS

Presentation Description: 
This session presented a brief overview of options for fertility preservation in female and male survivors of childhood cancer. Mostly, the session reviewed the options for survivors who are unable to conceive post treatment.  The session discussed the options for building a family using third party reproduction.  The practical and legal perspectives were discussed for surrogacy, donor eggs and donor sperm

Speakers:
Sara R. Cohen, LL.B.
Fellow of the American Academy of Assisted Reproductive Technology Attorneys
Adjunct Professor, Osgoode Hall Law School

Karen Glass, MD, FRCS(C), FACOG
Reproductive Endocrinologist, CReATe Fertility Centre
Director, Oncofertility Program
Assistant Professor, University of Toronto.


All in the Family: Talking to Siblings about Childhood Cancer


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Presentation Description: 
When a child is diagnosed with cancer, the focus automatically tends to fall on that child and how their disease will affect them.  People rarely think about how the disease will affect their entire family, especially any siblings they may have.  Whether the sibling is older or younger, at the hospital every day or away at school, having a sibling with cancer will inevitably not only change the dynamic with their brother/sister, but the family as a whole.  This presentation looked at the disease through a less heard of, but equally important point of view: the sibling. The panel included the voices of an older brother, a younger sister, and a summary of relevant research presented by a health care professional.

Speakers:
Norma D'Agostino, Ph.D., C.Psych.
Clinical Health Psychologist, University Health Network
Lecturer, Department of Psychiatry, University of Toronto

Jenna Shamata, BAH
Sibling of a childhood cancer survivor

Kevin Wang, BHSc, MD/PhD Candidate
Hospital for Sick Children
University of Toronto
Sibling of a childhood cancer survivor


Beyond Survival: Emotional Equilibrium After Cancer


VIEW THE PRESENTATION

Presentation description:
Childhood cancer can be an intensely stressful experience that may have emotional affects even years after treatment.  While cancer can contribute to personal growth in some ways, it can also lead to emotional and social vulnerabilities later in life.  This session explored common developmental challenges for survivors, highlighted the relationship between emotional and physical health, and considered the different ways survivors make sense of their cancer experiences as they move into adulthood.

Speaker:
Christopher J. Recklitis, Ph.D., MPH
Senior Psychologist
Dana-Farber Cancer Institute
Assistant Professor of Pediatrics
Harvard Medical School


Workshop B - Communicating with Family and Friends


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Presentation description:
This workshop provided participants the opportunity to have small group discussions about challenges around communicating with family and friends about the hard things. Topics addressed included: a) When to tell people about your cancer history? b) How to explain to others that “It is not over” and c) Learning to ask for help when you need it. Through the discussion helpful strategies and techniques were identified and compiled. The goal was for participants to leave the workshop with increased confidence and comfort in their ability to tackle the difficult conversations with family and friends.

Speaker:
Norma D'Agostino, Ph.D., C.Psych.
Clinical Health Psychologist, University Health Network
Lecturer, Department of Psychiatry, University of Toronto


Workshop C - Common Workplace Issues: Tools and Strategies


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Presentation description: 
Working from “Rethinking Disability in the Private Sector,” a Government of Canada Report from the Panel on Labour Market Opportunities for Persons with Disabilities, this workshop explored the reasons why qualified people with disabilities are good employment prospects. Myths surrounding hiring people with disabilities are discounted. The pros and cons of disclosing disability status are discussed, as well as types of accommodations and what the employee can take responsibility for in the accommodation process.

Speaker:
Lori Turner-Otte, BA, RRP
SAVTI Counsellor
Pediatric Oncology Group of Ontario (POGO); London Health Sciences Centre

 


Workshop E - Genetic Testing for Cancer Survivors: Who and When


VIEW THE PRESENTATION

Presentation description:
Genetics and genes are two words that we hear all the time in the news, especially when there are new discoveries in cancer.  What do these words really mean in relation to cancer?  And what do these words mean for survivors of childhood cancer?  Workshop participants discussed some common genetic predisposition syndromes and what we can do to determine is a family has a genetic predisposition to cancer.  Participants also discussed the pros and cons to having testing done for some of these conditions and discuss how some of these genetic tests are done. 

Speaker:
Nikki Parkinson, MSc, CGC
Genetic Counsellor, Division of Clinical and Metabolic Genetics;
Coordinator, Molecular Genetics Laboratory, Division of Molecular Genetics, DPLM
The Hospital for Sick Children
Lecturer, Department of Molecular Genetics
University of Toronto