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Survivorship Simplified: Tools and Resources Across the Continuum
Thomas P. Sellers, MPA12-Year Cancer Survivor
President and CEO National Coalition for Cancer Survivorship
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Objectives
Identify different and changing needs across the survivorship continuum
Learn about existing resources for people diagnosed with cancer
Understand how to access and use these resources
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
National Coalition for Cancer Survivorship
Founded in 1986 by a diverse group of leaders in cancer care, research, support, and advocacy
Began by defining the terms survivor (anyone with a diagnosis of cancer and for the remainder of life) and survivorship (living with, through, and beyond cancer)
Published Imperatives for Quality Cancer Care: Access, Advocacy, Action & Accountability, leading to the establishment of the NCI Office of Cancer Survivorship in 1996
Co-Chaired 2005 Institute of Medicine Lost in Transition report
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
National Coalition for Cancer Survivorship
MISSION: To advocate for quality cancer care for all people touched by cancer.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Simplifying Survivorship Resources for patients/survivors Trainings and materials for health care
professionals Information on survivorship issues to key
opinion leaders Advocacy and advocacy tools
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Survivorship Continuum
Post DiagnosisPre-Treatment
During Treatment
Transition:End of Life
Transition:Post-Treatment
CommunicatingFinding InformationMaking DecisionsStress
New health needsLong term and late effectsPost-treatment care
CommunicationMaking Decisions
Insurance EmploymentSolving ProblemsNegotiating
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for the Newly Diagnosed
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox®
Free, award-winning audio (CD) program
Self-learning program that teaches advocacy skills to help navigate a cancer diagnosis
Teaching a person to fish vs. giving them the fish
Survivor experiences told through vignettes using real situations
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival ToolboxBasic Skills
Communicating Finding Information Making Decisions Solving Problems Negotiating Standing Up for Your
Rights
Special Topics First Steps for the Newly
Diagnosed Topics for Older Persons Finding Ways to Pay for
Care Caring for the Caregiver Living Beyond Cancer Dying Well – The Final
Stage of Survivorship Blood cancers (multiple
myeloma, NHL, CLL, CML, transplant)
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:Programs for the Newly Diagnosed Communicating
letting someone else know clearly what you think and feel and also learning what the other person thinks and feels
Finding Information being able to use many of the different resources
available to find information that will help you understand your kind of cancer and its treatment.
First Steps for the Newly Diagnosed information that needs to be gathered and the
decisions that need to be made in the initial days and weeks after you are diagnosed with cancer
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Teamwork: The Cancer Patient’s Guide to Talking With Your Doctor Coping with a
diagnosis Biopsies and tests Pain relief Fatigue Clinical trials Transitions when
treatment ends End-of-life issues
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
You Have the Right to Be Hopeful
Hope is complex Hope is defined
differently Hope is flexible There is no such thing
as false hope
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for People In Treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:Programs for People In Treatment Solving Problems
being able to follow the steps needed to solve a difficult situation in your life or daily activities
Finding Ways to Pay for Care designed to help underinsured or uninsured people who
are having difficulty finding and getting the care that they need
Caring for the Caregiver developed specifically to provide resources and support
for cancer caregivers to help them address the issues they face on an ongoing basis.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
What Cancer Survivors Need to Know about Health Insurance
Understand types of insurance
Know your rights related to health insurance
Learn about important resources
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Working It Out: Your Employment Rights as a Cancer Survivor
Most cancer survivors want to be able to perform their jobs and return to work after diagnosis
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Self-Advocacy: A Cancer Survivor’s Handbook
How to become your own best advocate
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for People Post-Treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:Programs for People Post-Treatment Living Beyond Cancer
Cancer survivorship is a day-to-day, ongoing process that begins with your diagnosis and continues through the rest of your life. Living Beyond Cancer discusses a number a important issues that are specific to life beyond the diagnosis and initial treatment of cancer.
Making Decisions Being able to identify how you make decisions, how your
style of decision making can work or be improved, and how you can weigh the pros and cons of deciding about cancer treatment
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:A Free Cancer Care Planning
Program
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:A Free Cancer Care Planning Program
The user can add as many additional, custom contacts as they wish.
All contact fields haveauto-complete so users can select from a list of previously entered contacts.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward:A Free Cancer Care Planning Program
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The form contains a number of drop-down lists to minimize the amount of data inputting that the user needs to do.
Journey Forward:A Free Cancer Care Planning Program
The table of chemotherapy agents is displayed automatically, based on the regimen selected.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Journey Forward Survivorship Library: Searchable database Information from trusted sources,
i.e., ACS, ASCO, NCI Specific survivorship issues (e.g.,
fatigue, hair loss, fertility) Cancer specific articles’ www.journeyforward.org/library
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Resources for End of Life
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
The Cancer Survival Toolbox:Program for People with Advanced Cancer
Dying Well: The Final Stage of Survivorship Choices and control Managing expectations Whether to continue treatment Symptom management Dealing with grief
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Summary
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Summary Survivorship needs change over time.
Patients should be engaged in the decision making process and be actively engaged with the health care team across the continuum.
Care planning is a vehicle for improving care through communication and coordination from diagnosis through the balance of life.
The resource presented today help equip survivors and professionals with skills and tools to effectively work together in a patient-centered way.
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
Thank You!
Thomas P. Sellers, [email protected]
www.canceradvocacy.org 301-650-9127
© 2011 National Coalition for Cancer Survivorship. All Rights Reserved. This material may not be reproduced, displayed, modified or distributed without the express prior written permission of the copyright holder. For permission, contact [email protected]
