Explore this robust resource bank of curated nationally available materials to support your metastatic breast cancer patients. To filter contents by care continuum stage (from first diagnosis of MBC through hospice) select a circle on the care continuum map below. Email resources to a patient or colleague by selecting the envelope icon in the bottom right corner. Want to recommend another resource? Found a broken link? Please email resources@accc-cancer.org with any comments or questions.
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Breastcancer.org
Breastcancer.org
Breastcancer.org
Breastcancer.org
Living Beyond Breast Cancer
Video Series
Cancer Finances
Triage Cancer
Discusses the common emotions, reactions and challenges of preparing for life changes. This includes a loss through death, change in relationship, financial implications and daily and behavioral changes that occur as part of coping with loss. While the focus on this webinar will be on End of Life, topics will be applicable to overall life changes due to a cancer diagnosis and how caregivers and loved ones can best prepare and care for themselves leading up to, during and following these changes. 1 hour.
NCBI
A conversation guide that reviews the six-step SPIKES (setting, perception, invitation for information, knowledge, empathy, summarize and strategize) protocol for giving bad news.
Cancer Support Community
Worksheet that helps patients: 1) get organized before medical appointments, and 2) write down goals for treatment.
Living Beyond Breast Cancer
Video Series
Sharsheret
Makeup and guides for your changing skintone and other side effects.
Sharsheret
A full, 24 page guide to bone health for patients with bone metastases from solid tumors.
Breastcancer.org
Topics Include: Facing the End of Life, Managing the Emotions of Breast Cancer, Personal Finance after an MBC Diagnosis, Living Well with Metastatic Disease, Sexual Health, Intimacy and Metastatic Disease, Quality of Life, Need for a Cure Not Awareness, Cancer Lifer, Living with MBC
Cancer Support Community
The Cancer Experience Registry is designed to help people impacted by cancer, particularly those living with metastatic breast cancer, to share their story, to learn about the experiences of others and to help transform the cancer experience. People who participate are connected to a network of support and resources. Findings from the Registry help us all better understand the social and emotional needs of people living with cancer and improve the ways in which care is delivered.
Cancer Legal Resource Center
The Cancer Legal Resource Center (CLRC) is a joint program of Disability Rights Legal Center (DRLC) and Loyola Law School, Los Angeles. The CLRC provides information and education about cancer-related legal issues to the public through its national telephone assistance line. The CLRC also conducts national education and outreach programs for community groups, employers and healthcare professionals, and it is actively involved in community activities to raise public awareness of cancer-related legal and public policy issues.
Cancer Support Community
Cancer Support Helpline Counselors provide resources and support to callers with various needs Monday through Friday from 9:00 a.m. - 9:00 p.m. ET. Helpline Counselors are also available online via the Live Web Chat.
Cancer Support Community
The Cancer Support Community’s mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthen by action, and sustained by community. This site offers information about metastatic breast cancer, practical support, treatment information, news and articles, featured organizations, patient and caregiver insights and provides a cancer caregiver toolkit.
Caregiver Action Network
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
CBS News
Metastatic Breast Cancer Alliance
Find MBC Trials
Young Survival Coalition
Info page with risks and benefits of participating in a clinical trial.
Patient Advocate Foundation
This guide delivers expert advice specifically for Metastatic Breast Cancer patients to help avoid common insurance and care barriers.
Cancer Support Community
This fact sheet describes concerns common to people with metastatic breast cancer, and offers ways to regain control and help you maintain the best possible quality of life.
Cancer Support Community
In this webinar a Social worker, meditation facilitator, and a patient with metastatic bladder cancer discuss how to participate in mindful meditation in order to reduce stress. 90 minutes.
Living Beyond Breast Cancer
Video Series
Breastcancer.org
MBC Dictionary
SHARE
In this webinar, Lidia Schapira, MD, Director of the Cancer Survivorship Program at Stanford University, shares her expertise to help you get the most out of your communication with your oncologist. Learn strategies to optimize your meetings with your health care team.
SHARE
Caroline L. Bersak, Esq., from The Family Center's Legal Wellness Institute, explores your options for disability insurance in this webinar. Learn about Social Security Disability Insurance, Supplemental Security Income, and special rules and processes for people with metastatic breast cancer.
Social Security Administration
The disability planner will help you find out: how you can qualify and apply for benefits; what happens if your application is approved; who can receive benefits on your earnings record; what you need to know about receiving disability benefits; and when Medicare coverage starts for Social Security disability beneficiaries.
Metavivor and Eisai
The project gives people with MBC an opportunity to tell their personal stories through a series of unique pictures and inspiring videos.
Susan G. Komen
Explanation of current therapies and treatment options, including clinical trials.
Young Survival Coalition
Information about MBC for Young Patients in Spanish
Metastatic Breast Cancer Alliance
There will come a time when treatments no longer work and the patient needs to decide about hospice, end of life care and how we wish to die. Here are some helpful links.
Breastcancer.org
Sami Mansfield is a cancer exercise specialist, trainer, and CrossFit Level 1 coach with extensive exercise and nutrition experience. In this podcast, hear Sami discuss ways in which attainable “exercise snacks” can help people start exercising, the three exercises anyone can do safely at home, whether people with metastatic disease should “feel the burn” when they exercise, and how to talk to your oncologist about exercise. Running time: 32:05
Triage Cancer
Metavivor
FORCE
This page provides important information and resources for people diagnosed with metastatic breast cancer (MBC). People living with MBC may benefit from genetic testing, tumor testing, and targeted therapies. Results from testing may reveal new treatment options or opportunities to participate in research. The information and resources on this page can help you make decisions about your treatment, care, and well-being.
Sharsheret
Tools to record and organize financial information, guidelines.
SHARE
Explains the latest clinical trials for metastatic breast cancer and how to find them. How to identify appropriate clinical trials, determine eligibility and "must ask" questions for the researchers, and find strategies to determine best options.
Duke Cancer Institute
Study enrollment (paid) available for MBC patients to participate in online program that assists with decision-making and care planning. It is designed to help patients: Converse with healthcare professionals. Have a supportive conversation with family and friends. Explore spiritual beliefs. Explore inner reflection and personal quality time. This online program assists with decision-making and care planning for those with advanced disease. It is designed to help you: Learn skills to reduce stress, clarify your wishes and feel empowered. Share decision-making with your loved ones and healthcare providers. Understand available treatment options, including palliative care and hospice.
Cancer Support Community
Leaders in oncology discuss the latest medical information in an easy-to-understand format to empower patients and their families to make informed decisions about their cancer care.
Cancer Support Community
The purpose of this guide is to help patients find the information and support they need to better understand metastatic breast cancer and some of the aspects of managing the disease upon initial diagnosis and beyond. Chapters include: Empower Yourself, Understanding MBC, Treating MBC, Managing Symptoms and Treatment Side Effects, Quality of Life Considerations, Resources and Glossary.
Breastcancer.org
A clinical dietitian, social worker, and patient representative discuss coping methods for patients with metastatic breast cancer focusing on maintaining emotional and nutritional health. 60 minutes.
Cancer Support Community
Tune in Tuesday afternoons for Frankly Speaking About Cancer, an internet radio broadcast empowering listeners to live well with cancer. Hosted by Kim Thiboldeaux, CSC’s President & CEO, the show invites medical experts, opinion leaders, authors, caregivers and survivors to share information and advice on how to live a better life with cancer.
Breastcancer.org
Webinar and Supportive PDFs
FORCE
People who have been diagnosed with metastatic breast cancer may benefit from genetic testing to learn if they have an inherited mutation that caused their cancer. This page explains several benefits of knowing if the cancer was caused by an inherited mutation.
Body image and sexuality impact every stage of your breast and ovarian cancer journey – whether you are at risk, newly diagnosed, in treatment, a survivor, or living with metastatic cancer. Learn from our expert speakers, including a psychotherapist, sexual health expert, and also a plastic surgeon who address personal questions surrounding the safety of breast implants.
Living Beyond Breast Cancer
Young women talk about how they identify support people and what type of support they need. Psychologists Pamela J. Ginsberg, PhD, and Helen L. Coons, PhD, ABPP, provide tips on how to communicate well with family and friends.
Living Beyond Breast Cancer
Includes guides for the Newly Diagnosed, Managing Stress and Anxiety, Palliative Care, Financial Concerns, and Clinical Trials (online and printed copies available). Guide for the Newly Diagnosed is available in English: Spanish, Chinese, Vietnamese, Tagalog and French.
Young women living metastatic breast cancer often face many challenging decisions that involve difficult conversations with family members and friends. In this video, young women share their strategies for starting these conversations and psychologists Pamela J. Ginsberg, PhD, and Helen L. Coons, PhD, ABPP, give advice on how these dialogues can be helpful.
Living Beyond Breast Cancer
During this free webinar for healthcare providers, Pamela Ginsberg, PhD and Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Beth Caldwell will talk about exploring the unique psychosocial needs of young metastatic breast cancer patients; ways to offer support and resources specific to this population; common challenges for healthcare providers working with young women living with metastatic breast cancer; and national metastatic breast cancer resources. Audio and slides available.
Sharsheret
Have your patients order Sharsheret’s free kit designed for those women facing metastatic breast cancer. The Thriving Again customizable kit includes resources to assist your patients live healthfully, both physically and emotionally. It includes a cookbook, pedometer, care information and educational resources chosen by the patient.
This website can help pinpoint sources of strain for a caregiver and create a Personal Care Guide to help improve well-being.
Triage Cancer
This webinar will cover the basics of the Medicare system, including how to become eligible, the different “Parts,” and what to think about during open enrollment.
The thoughts in this brochure are intended to help you deal with the tension of dying and help patients to continue to live even though they are dying.
SHARE
A short video featuring patient interviews on how they learn about and use clinical trials.
SHARE
A short video featuring patient interviews on finding a support system once diagnosed with MBC.
SHARE
A short video featuring patient interviews on how their worked with their doctors to make treatment decisions
National Hospice and Palliative Care Organization
The National Hospice Foundation offers a series of six short videos that review the basics of hospice care. The National Hospice Foundation offers a series of six short videos that review the basics of hospice care. Understanding Hospice Care, An Introduction. 3 minutes What is Hospice Care? 2 minutes. Types of Hospice Care Services. 3 minutes. When to Begin Hospice Care. 3 minutes. Paying for Hospice Care. 2 minutes. Choosing a Hospice. 4 minutes.
Stanford Medicine
Asking patients how they would like to die is not a question that comes easy to most doctors. Not surprisingly, most of us – doctors and patients alike – prefer to avoid the topic completely. Read about a study on end-of-life conversations.
Metavivor
Map of in-person support groups throughout the U.S. MBC patients share advice, encouragement, challenges, compare treatments, learn about local resources, and simply enjoy the company of others who are on the same journey.
Metastatic Breast Cancer Network
A listing of in-person support groups that MBC Network members have shared.
Susan G. Komen
Helpline: 1-877 GO KOMEN (1-877-465-6636) provides free, professional support services to anyone with breast cancer questions or concerns, including people with metastatic breast cancer and their families. M-F, 9a-10p ET. You can also email the breast care helpline at helpline@komen.org.
Susan G. Komen
This page discusses metastatic breast cancer treatment and care. You can also find information on support for patients and their families.
Living Beyond Breast Cancer
Patients can talk by phone with a trained volunteer who has been diagnosed with breast cancer. They can provide them with emotional support, share practical information and give comfort. All calls are completely confidential. Women and men diagnosed with breast cancer and their caregivers are invited and encouraged to use the Helpline. Hours: Monday – Friday from 9:00 AM to 9:00 PM. (ET). At all other times, leave a message and your call will be returned within 24 hours or and often much sooner.
Living Beyond Breast Cancer
LBBC’s “Let’s Talk About It” video series covers health topics relevant to young women. These unique videos combine the perspectives of young women affected by breast cancer and their healthcare providers. We also have a series of videos that focus on issues specific to young women living with metastatic breast cancer.
Sharsheret
Free kits and materials tailored for patients, including webinars, podcasts, and brochures on bone health.
Young Survival Coalition
Resources for young women to learn how to live well with MBC, take control of their health and treatment, and connect with other young women facing similar challenges.
CURE Magazine
Article in CURE Magazine
Breastcancer.org
In this section, you can read about ways to live with metastatic breast cancer, manage feelings, get support, and talk to family and friends.
Lotsa Helping Hands
A painless way to organize help. With the Help Calendar, you can post requests for support - things like meals for the family, rides to medical appointments, or just stopping by to visit. Members of your community can quickly find ways to help, and Lotsa will send reminders and help coordinate logistics automatically so nothing falls through the cracks.
SHARE
Dr. Kit Cheng presents this 53 minute webinar.
MBC Alliance
MBC Connect is an interactive, web and mobile friendly patient registry, where patients can share their MBC disease history, experiences, and quality of life information through brief, easy-to-use surveys. Information is encrypted and personally identifiable data is removed before it is released or shared. Designed by patients, for patients. The app also offers custom-tailored insights like MBC news, events, and clinical trial opportunities.
Young Survival Coalition
Connect online with young women with MBC
Broad Institute of MIT
A data collection program run by the Broad Institute of MIT and Harvard for MBC patients that shares consenting individuals’ tumor samples, medical information, and voice with the goal of speeding up development of future therapies.
SHARE
Those living with Metastatic Breast Cancer often struggle with additional negative feelings during Breast Cancer Awareness Month. Dr. Dizon speaks to women with MBC to offer encouragement and coping strategies specifically tailored for October-related issues.
Triage Cancer
This webinar will cover the basics of the Medicare system, including how to become eligible, the different “Parts,” and what to think about during open enrollment.
Living Beyond Breast Cancer
Improving quality of life, new research directions and how to make informed decisions about care.
Metastatic Breast Cancer Alliance
Phase 1 Report. Developing the Prototype. A guide for practitioners and their patients. To enable all people living with metastatic breast cancer to understand the disease itself and the implication of it, so they may fully participate in decision making around their treatment.
SHARE
SHARE Cancer Support offers free educational programs conducted by innovative researchers, prominent surgeons and oncologists, and inspired complementary health practitioners. They have a full calendar of programs where you can learn what's happening with breast from the leading experts in the field. Live programs, in person and by webinar, are presented in a clear, user-friendly way, with Q&A sessions at the end.
Young Survival Coalition
The Metastatic Navigator presents the most up-to-date information on MBC including: treatment options; quality of life issues; communicating with healthcare providers, family and friends about your disease; lists of questions to ask your doctors; and resources available for additional assistance.
Young Survival Coalition
Presents the most up-to-date information on treatment options; quality of life issues; communicating with health care providers, family and friends about the disease; a list of questions to ask your doctors; and more.
BreastCancerTrials.Org
Metastatic Trial Search is a clinical trial matching service designed specifically for patients with metastatic breast cancer. Developed by BreastCancerTrials.org in collaboration with five breast cancer advocacy organizations. Providers can use Metastatic Trial Search to find trials for patients or refer patients to use it on their own.
Tigerlily Foundation
Guidebook focused on meeting the needs of young women living with MBC, diagnosed under the age of 45 years old.
Tigerlily Foundation
Helps you understand important things about MBC in order to understand your diagnosis and make treatment decisions.
National Coalition For Cancer Survivorship
Marlene King discusses living with metastatic breast cancer and collaborative decision-making with her oncologist.
Metastatic Breast Cancer Network
Starter page for what MBC means; connects to resource pages.
Metavivor
Support page for the newly diagnosed to find both validation and hope. For the non-patient family, friend or caregiver to gain a sense of what it means to be someone just beginning to live with stage IV breast cancer. Research and support pages.
SHARE
This engaging and culturally sensitive tool is an illustrated guide for Latinas with metastatic breast cancer and their loved ones. Offered In English and In Spanish.
Metastatic Breast Cancer Alliance
Speech given by Lila Romeo at a press briefing for the Global Advocacy Working Group.
Sharsheret
Education for parents on the impact of a diagnosis on children. Starter set of games and activities to occupy children during or post-treatment.
Comprehensive Blood and Cancer Center
Slide deck. See this cancer center's model for partnering with their local hospice organization.
Inc.
PSI is a national non-profit organization whose caring staff is committed to supporting people with expensive chronic illnesses and conditions through locating solutions with health insurance and assisting with premiums and prescription copayments to facilitate positive health and well-being.
SHARE
HELPLINE: 844-ASK-SHARE (844-275-7427). Trained metastatic peers ranging in age from early thirties to eighty. Some have been living with metastatic disease for many years. Available to answer patient questions, and give realistic hope and support. Fill out a form and have someone call you back, or you can reach them via email at helpline@sharecancersupport.org
Breastcancer.org
This section covers the financial, legal, practical, and physical issues to consider if you’re thinking about stopping treatment for metastatic breast cancer. You’ll find information about organizing your finances, managing symptoms and staying comfortable, and the support that hospice care can offer.
Cancer Support Community
Patients can complete this worksheet to help you talk with their health care team about symptoms, treatment options, side effects, and getting the emotional and practical support they need
Triage Cancer
This webinar will cover the various documents that can make up an estate plan, things to consider as you begin the process of creating your plan and options available to individuals to protect their medical decision making rights.
Triage Cancer
This webinar will cover the various documents that can make up an estate plan, things to consider as you begin the process of creating your plan and options available to individuals to protect their medical decision making rights. 40 minutes.
Triage Cancer
Triage Cancer
Breastcancer.org
Info page on building your medical team, molecular testing, research, etc.
Breastcancer.org
FORCE
A filterable database (by stage and type) of research studies focused on hereditary cancers (such as BRCA, HER2, etc.) that may be enrolling patients.
Rethink Young Women's Network
Young women with metastatic breast cancer connect with others. Education for the public and healthcare community about the unique needs of young women with MBC. Tips and tricks to handle difficult conversations and situations, plan for the future and balance stress and anxiety. Rethink Young Women’s Network (RYWN) is a closed, online group comprised of young women across the country that have personal experience with breast cancer. Members ask questions, post relevant blogs & articles to discuss, and initiate meet-ups in their city.
Young Survival Coalition
A series of three webinars tackling topics related to end of life.
Sharsheret
Patients may contact this clinical team of trained skilled mental health professionals and genetic counselors to speak privately at any point in their cancer journey. Confidential, psycho-social support and information to empower women and families to better understand individual circumstances, cope with unique challenges, and make informed decisions about treatment.
The Oncologist
A step by step approach to disclosing bad news – for the practitioner.
Patient Advocate Foundation
List of information on the resources available for Social Security Disability (SSD, or SSDI) and Supplemental Security Income (SSI): Social Security American Cancer Society How to Choose Credit Counseling Agency Hardin Benefits Group, Inc HeatShare Hill-Burton Program Managed RX Medical Information Resources Medicare National Association for the Terminally Ill National Association of Hospital Hospitality Houses, Inc Needy Meds Patient Advocate Foundation’s Patient Assistance Program www.patienttravel.org Salvation Army National Headquarters U.S. Department of Health & Human Services Utility Assistance (LIHEAP) Veterans Administration
Sharsheret
Train your staff about the culturally-relevant concerns of your Jewish patients facing breast cancer. We offer a brief webinar with our clinical staff to introduce some of the unique genetic, cultural, and religious issues that affect Jewish families.
SHARE
SHARE offers 10 telephone support groups each month specifically for those living with metastatic breast cancer. There is a specific group for young women and Spanish language support as well.
Susan G. Komen
Online forums for people with metastatic breast cancer to share their experiences with others.
Triage Cancer
Understanding how federal and state laws, employer policies, and disability insurance work together is key to being able to take time off work, maintain an income, and protect your job and employer-sponsored health insurance coverage. There are also options for caregivers who need to take time off work. This session will cover the Americans with Disabilities Act, the Family & Medical Leave Act, state leave laws, and disability insurance options, and explain how they can work together for you.
TEDTalks
Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.
BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified graceful end of life for his patients.
Metastatic Breast Cancer Network
List of national support groups
SHARE
SHARE offers 10 telephone support groups each month specifically for those living with metastatic breast cancer. There is a specific group for young women and Spanish language support as well.
West Virginia Public Broadcasting
This is a one-hour program which examines end-of-life care options and the need for advance directives including a living will, a medical power of attorney, and a POST form (Physician Orders for Scope of Treatment. The Last Chapter focuses on empowering individuals in having the last word on how they life at the end of their lives.
The Legacy Project
The legacy project provides a structured way to collect, save, and store family history information with stories, events, photographs, audio and video recordings, a family tree, and a scrapbook with stories, articles, pictures and documents. This can be a practical way of capturing a family's history and make a family legacy of many of the memories and precious events which represent a person's and family's life story. It also provides guidance on how you can plan your personal, financial and end-of-life care to help simplify necessary family duties and decisions so that your wishes are carried out.
Underbelly
A support blog for breast cancer patients that illuminates breast cancer’s darker side. Categories include Mastectomies, LGBTQ, Mental Health, Sex and Relationships, and more.
Underbelly
A candid, personal interview with a different MBC patient each week highlighting their legacy, goals, and commentary about life with MBC.
Video Series
Metavivor
Provide training for the patients with MBC who are interested in becoming Peer Leaders and starting their own support groups.
Cancer Support Community
This booklet covers treatments for metastatic breast cancer. Learn what you need to know right away to begin to move forward and make the best decisions for your care and your life.
Triage Cancer
Triage Cancer helps survivors, caregivers, health care professionals, and advocates to navigate cancer survivorship though educational events, a national Speakers Bureau, and online tools and resources.
Triple Negative Breast Cancer Foundation
The Triple Negative Breast Cancer Foundation has partnered with Cancer Care to offer free, professional support services to patients, families and health providers coping with a diagnosis of triple negative breast cancer. The helpline is staffed by experienced oncology social workers with specific knowledge of triple negative disease. Helpline: 877-880-TNBC (8622) M-Th, 9a-7p ET, F 9a-5p ET. Or email: TNBCHelpline@cancercare.org.
Triple Negative Breast Cancer Foundation
See the most recent information on Triple Negative Breast Cancer
Tigerlily Foundation
Resources on patient rights, disability, finances and insurance, work, dating, family, creating a support group, blog, social media, etc. for young women
Sharsheret
2 sided fact sheet
Dana-Farber Cancer Institute
Highlights from the annual forum on October 21, 2017, sponsored by Dana-Farber's Susan F. Smith Center for Women's Cancers and EMBRACE (Ending Metastatic Breast Cancer for Everyone).
FORCE
FORCE’s eXamining the Relevance of Articles for Young Survivors (XRAYS) program is a reliable resource for breast cancer research-related news and information. XRAYS reviews new breast cancer research, provides plain-language summaries, and rates how the media covered the topic. XRAYS is funded by the CDC.
Living Beyond Breast Cancer
Video Series
Young Survival Coalition
A collection of recordings of educational material for young women on a variety of topics, including research, living with breast cancer, practical matters and more. Some of the topics offered are: Breast Cancer and Young Women Breast Cancer by Type Treatment, Surgery and Reconstruction Treatment Side Effects Genetics and Personalized Medicine Clinical Trials Nutrition and Physical Wellness Emotional Wellness Family, Dating and Relationships Navigating End of Life Issues Family Planning and Pregnancy All of You: Sex, Intimacy and Body Image Handling the Details: Practical Matters, Career and Finances Breast Cancer and the Environment Advocacy, Policy and Telling Your Story Co-Survivors: Supporting Her and Caring for You