Survivorship Handbook Everything you need to know to create a more confident cancer journey. Brought to you by PearlPoint Cancer Support Download at MyPearlPoint.org © 2014 PearlPoint Cancer Support. All rights reserved. Sign up for a FREE, personalized dashboard on My PearlPoint to find more resources like the ones in the Cancer Handbook. 1. Go to http://my.pearlpoint.org/sign-up. 2. Fill out your profile by answering a few simple questions to receive personalized resources. 3. Use your dashboard to save resources and information you find helpful, track your well-being, and print additional worksheets. What else will you find at My PearlPoint? Nutrition and side effects management Recipes Survivors stories Videos from cancer experts and survivors Clinical trial locator Cancer resource locator Want more resources on the go? Download the Cancer Side Effects Helper app for FREE at Google Play and iTunes. The app provides nutrition tips to help you manage side effects from cancer treatment. Follow us on Facebook, Twitter, Pinterest, and YouTube. mypearlpoint.org 1 Table of Contents Introduction .............................................................................................................................. 4 About The Survivorship Handbook ......................................................................................... 4 Survivorship Navigation Team ................................................................................................ 4 Survivorship and Wellness ..................................................................................................... 6 Follow-Up Care ....................................................................................................................... 6 Recommended Screenings, Tests, and Exams ............................................................... 7 Maintenance Therapy/Adjuvant Therapy ....................................................................... 10 Risk Factors for Recurrence and Secondary Tumors .................................................... 12 Signs of Recurrence and Secondary Tumors ................................................................ 14 Genetic Counseling for You and Your Family ................................................................ 15 Healthy Behaviors for Prevention and Recovery ................................................................... 16 Survivorship Nutrition .................................................................................................... 17 Food Safety ................................................................................................................... 19 Smoking Cessation ........................................................................................................ 20 Immunizations ............................................................................................................... 23 Sunscreen ..................................................................................................................... 24 Emotional Health ................................................................................................................... 25 Emotional Support Programs......................................................................................... 27 Fear of Recurrence ........................................................................................................ 28 Side Effect Management ........................................................................................................ 31 Introduction to Treatment Toxicities ...................................................................................... 31 Bowel and Bladder Control ................................................................................................... 31 Cardiac Issues ...................................................................................................................... 31 “Chemo Brain” (Cognitive Issues) ........................................................................................ 33 Dry, Itchy Skin ....................................................................................................................... 35 Fatigue .................................................................................................................................. 37 mypearlpoint.org 2 Gastrointestinal Issues .......................................................................................................... 38 Insomnia and Difficulty Sleeping ........................................................................................... 41 Lymphedema ........................................................................................................................ 44 Menopause Symptoms ......................................................................................................... 46 Neuropathy ........................................................................................................................... 47 Pain ....................................................................................................................................... 48 Sexual Side Effects and Functioning..................................................................................... 51 Female Sexual Side Effects........................................................................................... 51 Male Sexual Side Effects ............................................................................................... 55 Trouble Swallowing ............................................................................................................... 59 Weight Gain .......................................................................................................................... 59 Weight Loss .......................................................................................................................... 61 Practical Concerns ................................................................................................................. 63 Financial Consequences of Cancer ...................................................................................... 63 Financial Tips for Cancer Survivors ...................................................................................... 64 Insurance Options ................................................................................................................. 65 Social Security Disability Benefits ......................................................................................... 68 Returning to Work ................................................................................................................. 69 Parenting ............................................................................................................................... 71 Marriage/ Partner Relationship ............................................................................................. 73 Worksheets ............................................................................................................................. 76 My Follow-Up Care Plan ....................................................................................................... 77 My Medical History ................................................................................................................ 79 Immunizations Record .......................................................................................................... 85 My Healthcare Team Contact List ......................................................................................... 86 Calendar ............................................................................................................................... 89 Appointment Planner............................................................................................................. 91 Additional Resources ............................................................................................................ 93 mypearlpoint.org 3 Introduction Welcome to the Survivorship Handbook presented by PearlPoint Cancer Support. About The Survivorship Handbook You’ve just finished cancer treatment, but you may be asking yourself what comes next? Survivorship brings with it new challenges and questions. Use PearlPoint Cancer Support’s Survivorship Handbook as your guide. The “new normal” is a phrase used by many cancer survivors to describe life after cancer treatment as they create and settle into new routines that no longer revolve around treatment and appointments. Once your treatment plan is complete, you might expect life to return back to the way it was before you were diagnosed with cancer. However, your cancer journey doesn’t always end when treatment ends. It takes time for you and your family to recover, physically and emotionally. In this handbook, you’ll learn how to stay healthy and well during survivorship through follow- up care and make healthy lifestyle changes. You will learn strategies to help prevent recurrence and secondary tumors. You will also learn how to care for your emotional needs such as managing fear of recurrence. Even after treatment ends, you may experience new or long-term side effects, but most side effects are manageable. It’s important to know what to expect. This handbook will walk you through the possible side effects and tips for managing them. The Survivorship Handbook also addresses the practical issues of life after cancer treatment such as health