1. Survivorship Simplified: Tools and Resources Across the Continuum Thomas P. Sellers, MPA 12-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 info@canceradvocacy.org

2. Objectives n Identify different and changing needs across the survivorship continuum n Learn about existing resources for people diagnosed with cancer n 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 info@canceradvocacy.org

3. National Coalition for Cancer Survivorship n Founded in 1986 by a diverse group of leaders in cancer care, research, support, and advocacy n 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) n Published Imperatives for Quality Cancer Care: Access, Advocacy, Action & Accountability, leading to the establishment of the NCI Office of Cancer Survivorship in 1996 n 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 info@canceradvocacy.orginfo@canceradvocacy.org

4. National Coalition for Cancer Survivorship n 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 info@canceradvocacy.orginfo@canceradvocacy.org

5. Simplifying Survivorship n Resources for patients/survivors n Trainings and materials for health care professionals n Information on survivorship issues to key opinion leaders n 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 info@canceradvocacy.org

6. The Survivorship Continuum Post Diagnosis Pre-Treatment During Treatment Transition: End of Life Transition: Post-Treatment Communicating Finding Information Making Decisions Stress New health needs Long term and late effects Post-treatment care Communication Making Decisions Insurance Employment Solving Problems Negotiating © 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 info@canceradvocacy.org

7. 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 info@canceradvocacy.org

8. The Cancer Survival Toolbox® n Free, award-winning audio (CD) program n Self-learning program that teaches advocacy skills to help navigate a cancer diagnosis l Teaching a person to fish vs. giving them the fish n 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 info@canceradvocacy.org

9. The Cancer Survival Toolbox Basic Skills n Communicating n Finding Information n Making Decisions n Solving Problems n Negotiating n Standing Up for Your Rights Special Topics n First Steps for the Newly Diagnosed n Topics for Older Persons n Finding Ways to Pay for Care n Caring for the Caregiver n Living Beyond Cancer n Dying Well – The Final Stage of Survivorship n 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 info@canceradvocacy.org

10. The Cancer Survival Toolbox: Programs for the Newly Diagnosed n Communicating l letting someone else know clearly what you think and feel and also learning what the other person thinks and feels n Finding Information l 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. n First Steps for the Newly Diagnosed l 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 info@canceradvocacy.org

11. Teamwork: The Cancer Patient’s Guide to Talking With Your Doctor n Coping with a diagnosis n Biopsies and tests n Pain relief n Fatigue n Clinical trials n Transitions when treatment ends n 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 info@canceradvocacy.org

12. You Have the Right to Be Hopeful n Hope is complex n Hope is defined differently n Hope is flexible n 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 info@canceradvocacy.org

13. 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 info@canceradvocacy.org

14. The Cancer Survival Toolbox: Programs for People In Treatment n Solving Problems l being able to follow the steps needed to solve a difficult situation in your life or daily activities n Finding Ways to Pay for Care l designed to help underinsured or uninsured people who are having difficulty finding and getting the care that they need n Caring for the Caregiver l 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 info@canceradvocacy.org

15. What Cancer Survivors Need to Know about Health Insurance n Understand types of insurance n Know your rights related to health insurance n 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 info@canceradvocacy.org

16. 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 info@canceradvocacy.org

17. 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 info@canceradvocacy.org

18. 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 info@canceradvocacy.org

19. The Cancer Survival Toolbox: Programs for People Post-Treatment n Living Beyond Cancer l 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. n Making Decisions l 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 info@canceradvocacy.org

20. 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 info@canceradvocacy.org

21. Journey Forward: A Free Cancer Care Planning Program The user can add as many additional, custom contacts as they wish. All contact fields have auto-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 info@canceradvocacy.org

22. 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 info@canceradvocacy.org The form contains a number of drop- down lists to minimize the amount of data inputting that the user needs to do.

23. 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 info@canceradvocacy.org

24. Journey Forward Survivorship Library: n Searchable database n Information from trusted sources, i.e., ACS, ASCO, NCI n Specific survivorship issues (e.g., fatigue, hair loss, fertility) n Cancer specific articles’ n 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 info@canceradvocacy.org

25. 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 info@canceradvocacy.org

26. The Cancer Survival Toolbox: Program for People with Advanced Cancer n Dying Well: The Final Stage of Survivorship l Choices and control l Managing expectations l Whether to continue treatment l Symptom management l 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 info@canceradvocacy.org

27. 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 info@canceradvocacy.org

28. Summary n Survivorship needs change over time. n Patients should be engaged in the decision making process and be actively engaged with the health care team across the continuum. n Care planning is a vehicle for improving care through communication and coordination from diagnosis through the balance of life. n 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 info@canceradvocacy.org

29. Thank You! Thomas P. Sellers, MPA tsellers@canceradvocacy.org 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 info@canceradvocacy.orginfo@canceradvocacy.org