Your Survivorship Care Plan

Once your treatment is complete, the focus of your care swiftly changes from therapy to healing, recovery, and prevention. One way to guide your care moving forward is through a document called a Survivorship Care Plan – a blueprint for managing your future care. Anyone can get a survivorship care plan, at any time, throughout their cancer journey.

web-card-graphic-1This document has two parts – an end of treatment summary and a care plan. The end of treatment summary condenses the history of your cancer and its treatments. This information is then used by your oncology team to create your care plan, which includes the recommendations for managing your health and cancer monitoring moving forward.

An end of treatment summary will be created by the oncology team that treated you. Some survivors have found it difficult to locate their treatment summary information further down the road, so it is important for you to request this once treatment ends, or soon thereafter.

web-card-graphic-2If you are no longer being seen by an oncologist, you may consider contacting the office or the hospital where you were treated to get a summary of the treatment you received. You may also consider obtaining a copy of your medical records – particularly your pathology report, a copy of the imaging reports, and a disk with your actual scans on them to attach to your entire Survivorship Care Plan.

Once you have your Survivorship Care Plan in hand, share it with other members of your healthcare team. Sharing this information will ensure your future health monitoring and preventive care moving forward.

Cancer Survivorship Care Plans: What You Need to Know

This video was created by the California Dialogue on Cancer, California Public Health, and Triage Cancer to help you understand the goals and elements of survivorship care plans. It provides a variety of ways to obtain a survivorship care plan.

On Your Own: Starting Your Personal Survivorship Care Plan

If you are unable to obtain a care plan from your oncology team, it is still important document your care and obtain a plan for life after cancer. Your first step is to get a summary of your treatments from your oncology provider. Choose and print one of the templates below, and begin to fill-in as much information as you can. Then, make an appointment with your oncology provider to review and complete the missing pieces. It is important keep a copy of your completed Survivorship Care Plan for yourself and to share it with the other members of your healthcare team. This gives everyone a better understanding  of how you will be monitored after your treatment ends. This information is powerful – the more you understand your plan of care going forward, the better prepared you are to enlist your entire team to help you heal, recover, and stay healthy.

What’s Next? Life After Cancer TreatmentWhat's Next

The Minnesota Cancer Alliance has created this Cancer Survivor Care Plan booklet to help you keep track of the details of your cancer treatment, talk to your healthcare provider about your symptoms, to understand the short and long-term side effects from your treatments, and manage your follow-up care. This booklet can help you develop a plan to take care of your physical, emotional, and practical needs and concerns related to post-treatment survivorship. You can order a free copy from the Minnesota Cancer Alliance here.

Journey Forward My Care Plan

My Care PlanAfter printing My Care Plan, fill in the general information and self-assessment to the best of your ability. Then, work with your oncology team to fill in the details of the Treatment Summary and Follow-up Care sections. Go to Journey Forward to learn more about the process and resources. Be sure to visit the Journey Forward Survivorship Library. The template is also available as a free mobile app (iOS and Android).

oncolinklife-logo@2xLIVESTRONG Care Plan powered by Penn Medicine’s OncoLink

This is an online tool you can use by completing questions about your cancer treatment experience, which are then used to create a survivorship care plan that you can print out and take to your oncology and primary care team to review. OncoLink has a large collection of the potential late and long-term side effects from treatment.

SGO Survivorship ToolkitThe Society of Gynecological Oncology (SGO) Survivorship Toolkit

The Society of Gynecologic Oncology has developed a number of resources for cancer survivors to help guide you on the next steps after treatment. They include care plans to download for survivors of cervical, endometrial, and vulvar cancers. General follow-up recommendations and post-treatment self-care plans for these cancers are also available.

These are meant to be printed and filled in to the best of your ability. They should be completed alongside your cancer care team, and used in addition to their follow-up and monitoring recommendations. Remember to share your Survivorship Care Plan with all of your healthcare providers.

Helping You Move Forward

10 Tips to Help You Navigate Life After Cancer and the New Normal

Great tips from an article in Cure Today, written by the cancer support community, IHadCancer. The goal of IHadCancer is to make connections that prevent the feeling of isolation experienced by those who have been affected by cancer. In addition to offering the ability to connect with others who may be experiencing the same journey, there is an array of resources and articles written by survivors on survivorship topics.

FFLACTFacing Forward: Life After Cancer Treatment

The NIH National Cancer Institute has compiled this booklet for people who have finished their cancer treatments. The booklet is free and can be downloaded to print or to a tablet device, such as a Kindle. The information provides answers to questions and concerns patients and survivors might have to help them understand what life is like after cancer treatments end.

 

Journey Forward Survivorship Library for Survivors

Journey Forward has a collection of topics, including information on late and long-term effects and other survivorship care links to credible resources for patients and families.

Dana Farber – Living Well Beyond Cancer: Experts Speak on Adult Survivorship Topics

Dana Farber was one of the first hospitals in the nation to begin acknowledging survivorship as a true phase of the cancer journey. Individuals who have survived cancer may face many challenges resulting from their cancer and treatments. Dana Farber has brought together experts from many fields to talk about the variety of issues cancer survivors face. There are 21 different topics, including nutrition, the importance of follow-up care, physical exercise, learning about symptoms to report to your doctor, fear of recurrence, and creating a survivorship care plan. They also have wonderful Information Sheets for Cancer Survivors, and a Cancer Survivorship Blog with timely topics to help cancer patients and survivors stay on top of what’s new in the cancer survivorship realm.

Dana Farber – Health Library on Survivorship Topics

Dana Farber has a variety of webinars and videos designed to help you gain an understanding of the issues related to a healthy survivorship. These videos are an exceptional way to learn about the challenges you, as a cancer survivor, could now be facing.

The Pink Ribbon Survivors Network

The Pink Ribbon Survivors Network connects breast cancer survivors to the most important up-to-date articles, support groups, and websites related to cancer survivorship. This website was started by a physician and his team, who are intense advocates for good survivorship care. They also provide a multitude of articles in their Curriculum for Recovery Library.

A List of Specialized Survivorship Clinics 

There are clinics nationwide that have specific training, knowledge, and management skills for the late and long-term effects of cancer and its treatments. This resource from OncoLink helps patients and healthcare providers locate these clinics.

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Finding Support

Brother and sister sitting on a rock in a beautiful trail in the woodsOne of the most important gifts you can be given in the post-treatment phase of survivorship is a good understanding what your needs are. Getting the support for those needs is essential to heal your body, mind, and soul, and to move forward. Support from your family, friends, and physician is vital to help you cope with the emotional, practical, and financial obstacles, and the side effects of your treatments. Please talk to your healthcare provider so they can partner with you to find the help and resources you need.

CancerCare Post-Treatment Survivorship Support Group

This is a 15-week online support group for people who have completed their cancer treatment. It’s led by an oncology social worker, and participants support each other and share resources and information. You will need to complete an online registration process. Once you have joined the group you can read messages 24 hours a day, 7 days a week.

Cancer Support Community

An international non-profit dedicated to providing support, education and hope to people affected by cancer. They provide online emotional support, education, and a program called Open to Options™ which provides counselors who can help cancer patients organize and prioritize their questions, concerns, goals and values before oncology visits. This program is available in English and Spanish, and helps patients make informed decisions about their care.

CancerCare Survivorship Podcasts

CancerCare offers Connect Educational workshops and Podcasts about a variety of topics (scroll to the lower part of the podcast link to see them). These sessions are for people who have completed cancer treatment, and who are in the post-treatment survivorship phase. The topics include managing late and long term side effects from treatment, communicating with your healthcare team, caregiving, fear of recurrence, workplace transitions, chemo brain, managing stress, intimacy, and more.

Tools for Talking About Depression with Your Doctor

U-M’s depression toolkit was created by the University of Michigan Depression Center. Talking with a doctor about what’s bothering you is the best way to identify the problem and take steps toward feeling better. Many people feel very frightened to talk about this health problem with their healthcare providers. Use these 13 tips for talking with your your physician about depression.

University of Michigan’s Depression Tools and Checklists

Here you will find a complete listing of the tools and checklists which can be downloaded from the University of Michigan Depression Center. Many can be used to assess how you are feeling and to communicate those feelings with your healthcare provider.  Examples illustrating how each tool can be used are also included. The website is packed with empowering information to help you share your concerns with your healthcare providers.

Finding a Therapist Who Can Help You Heal

Helpguide.org is a trusted source of mental, emotional and social help. This guide will help you choose an effective therapist to help you become stronger, more self-aware, and empowered as an active participant in your care.

Cancer Support Communities in Southwest Colorado & Northwest New Mexico

Though we are a group of small communities, we do have some supportive care programs for individuals who are going through different phases of cancer. Blueprints of Hope’s updated list of support organizations in our region includes support groups for grief and loss, caregivers, fertility, exercise, mentoring for hereditary cancers, and those which are specific to individual types of cancers. Building a community of supportive services for cancer survivors is a work in progress, so if you don’t find something that works for you, let us know.

 

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Healthy Living

Young woman on the marketFor many survivors, living a healthy lifestyle may lower the risk of recurrence and improve survival rate. Studies have not shown that healthy behaviors alone impact cancer survival, but they may help protect against other chronic diseases and cancers.  Following are guidelines, tools and booklets to help you work with your healthcare team to make healthy lifestyle choices. These choices include aiming for a healthy weight, eating healthy whole foods, getting regular exercise, keeping up with your immunizations, and not smoking.

Some insurance companies are now offering online health monitoring tools to help make it easier for their members to meet their personal health goals and develop a healthier lifestyle. Participating in these plans may not only help you set and achieve your goals, but they may lower your insurance premiums or qualify you for other benefits, including the services of a Healthy Lifestyle Coach. It may be beneficial to ask if that is a benefit available to you.

Guidelines for Nutrition and Physical Activity  

ACS Guidelines on Nutrition and Physical Activity for Cancer Survivors

The American Cancer Society (ACS) gathered a group of experts in nutrition, physical activity, and cancer survivorship to look at the scientific evidence and best practices related to optimal nutrition and physical activity after the diagnosis of cancer. This is a summary of their findings. These guidelines are written to provide healthcare providers with the best possible information with which to help cancer survivors. This is the simplified “ACS Nutrition and Physical Activity Guidelines – Patient Page.”

Nutrition

AICR’s Heal Well Guide

The American Institute of Cancer Research (AICR) has collaborated with Meals to Heal and the LIVESTRONG Foundation to produce this free, printable PDF resource. Adapted in part from AICR’s CancerResource and other sources, Heal Well (PDF) is a booklet that offers overall guidance to help you eat healthfully throughout and beyond your treatment. Making changes to your eating habits, living an active lifestyle, and aiming for a healthy body weight can help prevent cancer and lower the risk of some cancers returning. Please visit with your physician or a registered dietician if you need help mapping out your exercise or nutrition goals.

Rebecca Katz’s Website

Ms. Katz shares the love of whole healthy foods through her recipes, blog, and her book “The Cancer-Fighting Kitchen.” Her experience with cancer comes from cooking for her father while he was going through treatment. She works for Healing Kitchens at Commonweal, a program dedicated to training doctors and wellness professionals how to add cooking into the role of health and healing.

Gathered Table

Gathered Table is a healthy meal planning program that recommends the best recipes to match your food preferences. It is fee-based, but touts that meal planning will help you eat healthier homemade foods and less processed foods. They also state that you will save money and time worrying about what’s for dinner, as they will provide a grocery list to get everything you need with one visit to the market. Rebecca Katz contributes to the recipes on this website. There is a video on the website explaining how Gathered Table works.

NutritionFacts.Org

Michael Greger, MD is a licensed general practitioner, an author, and internationally recognized speaker on nutrition. He is a founding member of the American College of Lifestyle Medicine, and a specialist in clinical nutrition. This website provides short videos on the latest in nutrition research. The goal of Nutrition Facts is to “present you and your doctor with the results of the latest in peer-reviewed nutrition and health research” in an understandable way.

Environmental Working Group’s (EWG) Dirty Dozen

EWG is a great site to find clean products to eat, including fish with safer levels of contaminants and safer products to use on your skin and in your home. They created the 2017 Shopper’s Guide to Pesticides in Produce™ and the Shopper’s Guide to All 48 Fruits and Vegetables with Pesticide Residue Data.

Nutrition & Exercise

Managing Your Weight After a Cancer Diagnosis

Cancer.Net’s booklet can empower you to talk with your health care team about setting goals for losing weight and to find resources to help you reach those goals. The booklets is available in English, French and Spanish.

Healthy Weight and Diet for Breast Cancer – Susan Komen Foundation

These are recommendations for maintaining a healthy lifestyle for people who have experienced a breast cancer diagnosis. The discussion includes nutrition, exercise, lymphedema, and weight management.

Prostate Cancer Foundation’s Nutrition and Exercise Guide

Studies have shown that lifestyle – especially nutrition and exercise – can have a significant influence in cancer prevention and treatment. This guide was created by The Prostate Cancer Foundation to present information for men who want to maintain a healthy lifestyle that promotes prostate health.

Tools & Calculators

Your Prescription for Health – Exercise is Medicine®

Research has proven that exercise has a role in the treatment and prevention of more than 40 chronic diseases. Exercise is Medicine developed this Public Action Guide to help you discuss using exercise as “medicine” with your healthcare provider, and Exercising with Cancer as a guide to help begin an exercise program. They have also partnered with the American College of Sports medicine to provide an Exercise Time Finder, allowing you to fill in your typical week and look for blocks of time where exercise is an option.

The American Institute of Cancer Research (AICR) – Tools You Can Use

The AICR has compiled a group of tools you can use to help you to implement proper nutrition and exercise, understand what your risks are, and to make necessary changes to meet your healthy lifestyle goals. This includes healthy recipes, a nutrition hotline, BMI calculator, and “The New American Plate.” This is an excellent site that gives up-to-date science-based research related to the choices we can make to decrease our cancer risk.

Stay Healthy – Tools & Calculators by the American Cancer Society

Making healthy choices such as keeping a healthy weight, eating well, and including exercise and activity in your life helps to keep cancer risk down. This link includes fitness tools and calculators such as finding your target heart rate, your body mass index (BMI), and tips for sun safety and tobacco cessation.

NIH’s Aim for a Healthy Weight Body Mass Index (BMI) Calculator

The National Institutes of Health (NIH) has created this BMI Calculator as a useful measure of obesity, calculated from your weight and height. The higher your BMI, the higher your risk is for several chronic diseases, including certain cancers.

SuperTracker & NIH Body Weight Planner | Balancing Your Food and Activity

SuperTracker offers a variety of interactive tools to support individuals in making healthy lifestyle changes, such as eating well and beginning a fitness program. SuperTracker includes “ChooseMyPlate.gov” where you can get a personalized meal plan based on your caloric needs. It also has the Body Weight Planner, which helps develop a plan to reach weight management goals within a timeline. The tools are free and allow registered users to tailor their exercise needs to personal weight-management goals.

Blueprints  of Hope – Community Calendar

Join others through Live by Living Walks & Hikes, CancerFit, or for some restorative yoga. When we exercise with others it isn’t just exercise, it’s a social event that keeps us from feeling isolated.  Others come to expect to see you and you may look forward to seeing them.

 

 

 

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Psychosocial Support

The transition from cancer patient to cancer survivor is difficult. Cancer changes lives and its treatment and consequential side effects influence every corner of our patients’ lives. It’s understandable that distress can be considerable through all stages of the cancer continuum. These resources are links to help you lead patients toward support services that can help them navigate and ameliorate the emotional, practical, and physical challenges they face.

Clinical Practice Guidelines for Psychosocial Oncology

Elderly couple holding hands outdoors.The American Psychosocial Oncology Society (APOS) lists the current Clinical Practice Guidelines for Psychosocial Oncology on their website.  Included are the NCCN Clinical Guidelines for Distress Management, Survivorship Guidelines, and a link to the NCCN Distress Thermometer and Problem Checklist tools to use to distress level of cancer patients and survivors.

This APOS link also takes you to the American Society of Clinical Oncology (ASCO) evidence-based clinical practice guideline for managing depression and anxiety in adult patients with cancer, as well as the National Comprehensive Cancer Network (NCCN) Survivorship Guidelines.

ASCO Guideline for Screening, Assessment and Care of Anxiety and Depressive Symptoms in Adults with Cancer

The American Society of Clinical Oncology has established this process for adapting to other organizations’ clinical practice guidelines. This article summarizes the results of that process and presents the practice recommendations adapted from the Pan-Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress (Depression, Anxiety) in Adults with Cancer.

OncoLink’s Distress Screening Response Toolbox (DSRT)

DSRT is meant to be utilized after a patient has been screened for distress (for instance, by using the NCCN Distress Thermometer and Problem List). It provides printable problem-focused tip sheets, video education, and webinars for patients to  empower them with strategies for the self-management of distress. All content is free of charge to patients, caregivers, and healthcare providers.

This short video tutorial created by Penn Medicine’s OncoLink teaches how to use the Distress Screening Response Tools.

Center for Communication in Medicine

Speak Sooner™ ask questions now, live the answers program approaches the treatment and management of serious illness conversations that must begin with the patient. The Difficult Conversations Workbook (free downloadable PDF) helps patients understand and communicate their questions, concerns, and priorities so they can become more effective partners in their care.

Cancer Support Communities in Southwest Colorado & Northwest New Mexico

Though we are a group of small communities, we do have some supportive care programs for individuals who are going through different phases of cancer. Blueprints of Hope’s updated list of support organizations in our region includes support groups for grief and loss, caregivers, fertility, exercise, mentoring for hereditary cancers, and those which are specific to individual types of cancers. Building a community of supportive services for cancer survivors is a work in progress, so if you don’t find something that works for your patients, please let us know.

 

 

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Becoming an Active Participant in Our Health Care

Portrait of the old woman on a green background

TONI ABBEY, RN, OCN | JUNE 24, 2016

Having the blessing of human body ownership brings responsibility and accountability (if only to ourselves) of keeping them well tuned. As is with our bicycles, regular maintenance is necessary if we don’t want to end-up with expensive repairs, to prolong its usefulness and maintain a semblance of quality of life as we age. If we refuse the maintenance responsibility of bike ownership, bikes can be replaced. For this body of humanness – replacement is not an option.

And so it goes, maintenance is the key to the smooth operation of our being. Participation in maintenance of our being means we are taking the steps to learn how to prevent disease, to develop an awareness of our body in its “normal” state of health, and to seek prompt medical care when we find something isn’t working as it usually has. Read More

Your Next Steps

SONY DSCPeople who have finished their cancer treatments find themselves crossing a bridge into a phase of their cancer journey commonly referred to as post-treatment survivorship. There are several ways of defining survivorship and its meaning to each person is as individual as a fingerprint. To understand more about this important phase of survivorship, please read the explanation and video presented by Cancer.Net here.

Gaining knowledge and learning new tips and tools about your survivorship can empower you to live well beyond cancer.

Wendy Harpham Podcasts – On Healthy Survivorship

Wendy Harpham, MD is an internal medicine physician, an author, and national keynote speaker about healthy cancer survivorship. She is also a 25-plus year survivor of multiple recurrences of cancer. She is known as “a fierce advocate and mentor for helping patients become healthy survivors,” and having been on “both sides of the stethoscope” truly understands the survivorship journey. For timely articles written for survivors and providers, please visit her Healthy Survivorship Blog.

OncoLink – Cancer Survivorship: Navigating Life after Cancer

This webinar from Penn Medicine’s OncoLink regarding cancer survivorship provides information, tips and resources to help you transition from cancer patient to survivor and make the most of life post-treatment.

Dana Farber’s Living Well Beyond Cancer – Experts Speak on Adult Survivorship Topics

Dana Farber was one of the first hospitals in the nation to begin acknowledging survivorship as a true phase of the cancer journey. Individuals who have survived cancer may face many challenges resulting from their cancer and treatments. Dana Farber has brought together experts from many fields to talk about the variety of issues cancer survivors face. There are 21 different topics, including nutrition, physical exercise, fear of recurrence, and creating a survivorship care plan. They also have wonderful Information Sheets for Cancer Survivors, and a Cancer Survivorship Blog with timely topics to help cancer patients and survivors stay on top of what’s new in the cancer survivorship realm.

NCCS Cancer Survivor’s Toolbox® – Special Topic:  Living Beyond Cancer

This is a special topic of a series that was produced through collaboration between the National Coalition for Cancer Survivorship (NCCS), the Oncology Nursing Society, and the National Association of Social Workers with a grant from Genentech, Inc. Living Beyond Cancer encourages individuals to take an active role in their care and discusses a number of issues specific to life beyond cancer. Its goals are to teach skills to help survivors adapt to their new life and to help them be as healthy as possible. The Toolbox is available in English and Spanish.

FFLACTFacing Forward: Life After Cancer Treatment

The NIH National Cancer Institute has compiled this booklet for people who have finished their cancer treatments. The booklet is free and can be downloaded print or to a tablet device. The information answers questions and new concerns patients and survivors might have to help them understand what life is like after cancer treatments end.

 

 

ASCO Answers Cancer Survivorship.pdfASCO Survivorship Section on Cancer.Net

The American Society of Clinical Oncology (ASCO) provides information about all things related to survivorship for cancer survivors and their friends and families. They also created ASCO Answers Guide to Cancer Survivorship, which is free and can be downloaded as a printable PDF in English or Spanish from this page. This website’s information is for anyone facing a cancer diagnosis and is oncologist-approved.

 

 

Life After Treatment The Next Chapter in the Survivorship JourneyACS – Life After Treatment: The Next Chapter in the Survivorship Journey

The American Cancer Society (ACS) displays up-to-date information related to all phases of cancer survivorship. This booklet is published by the ACS as a guide for American Indians and Alaska Natives to discuss their care after treatment, and is a free PDF download.

 

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Holding Courage Retreat

Ghost RanchTONI ABBEY | ONCOLOGY NURSE NAVIGATOR | JUNE 7 2016

Over the weekend we visited the Ghost Ranch to experience some of the awe-inspiring spiritual geology where Georgia O’Keeffe lived and painted in her lifetime. While there we discovered an incredible resource at Ghost Ranch specifically for cancer survivors – “Holding Courage Retreats,” which are designated as a week-long haven for women who are experiencing cancer.  Their goal is for women to “spend time in a positive process that melds inner reflection and creativity with spirituality through group discussion and sharing, guided mediation, massage, yoga, body and breath work, and art and music therapy.”  The program ends each day with a refreshing, star-filled sky of earned sleep within the majestic canyons and mesas which surround the Ghost Ranch.  For more information, please see Ghost Ranch Holding Courage Retreats or contact Deena and Maureen at HoldingCourageRetreats@gmail.com. The next retreat is August 21-August 27th 2016, and they will hold two more retreats in November of 2016.

What a wonderful gift to share with survivors in our region! Thanks Maureen and Deena for all your work to provide this wonderful experience for cancer survivors.