Through a grant from the Colorado Cancer Fund, we have been afforded the opportunity to offer this comprehensive patient navigation guide to individuals who are newly diagnosed with breast cancer in Southwest Colorado. Judy Kneece’s Breast Cancer Treatment Handbook includes 242 pages of critical information, with explicit illustrations, teaching step-by-step all things related to breast cancer, including pathology reports and treatment options. The navigation guide also provides worksheets to help organize thoughts and questions to help prepare for care visits with the oncology and surgery teams. All information is presented in a format to assist patients in making informed decisions about their surgery and other breast cancer treatment options.
Our goal is to increase the quality of life for those who are experiencing a breast cancer diagnosis. We have distributed treatment handbooks to many of the surgeons who work with breast cancer patients in Southwest Colorado. If you live locally, please contact us if you or someone you love could use one — we are so happy to share!
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.
This 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.
If 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 Treatment
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
After 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).
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.
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.
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.
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.
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 Blogwith timely topics to help cancer patients and survivors stay on top of what’s new in the cancer survivorship realm.
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.
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.
One 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.
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.
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 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.
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.
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.
For 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.
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. These guidelines are written to provide health and wellness guidelines to help them move toward a healthier lifestyle. “ACS Nutrition and Physical Activity Guidelines.”
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.
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.
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.
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.
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 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.
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.
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.
Join others through Live by Living walks, hikes and outings, CancerFit, Qigong, or for some 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.
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.
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.
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.
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.
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.
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