Being educated about one’s disease is a key step for patients to advocate for themselves within the health care system. The first place to start is with your health care professionals and the psychosocial department of your hospital. Next, many metastatic breast cancer and breast cancer organizations provide excellent education and information resources.
Metastatic Breast Cancer Network’s 13 facts everyone should know about MBC
Guides for the Newly Diagnosed
Canadian Breast Cancer Network, Living Beyond Breast Cancer and Metastatic Breast Cancer Network have worked together to publish a Canadian version of a Guide for the Newly Diagnosed.
Ce guide est aussi disponsible en francais - Guide pour les patientes ayant reçu un diagnostic récent
Cancer Support Community - Frankly Speaking About Cancer - Metastatic Breast Cancer
National Comprehensive Cancer Network - Guidelines for Metastatic/Stage IV Patients
Anne Loeser, a metastatic breast cancer patient, has compiled a comprehensive collection of her layperson research on treatments, cutting edge research and dealing with side effects entitled “The Insider’s Guide to Metastatic Breast Cancer” that she is willing to share with others. She can be contacted at email@example.com
Living Beyond Breast Cancer hosts webinars and conferences on MBC issues
Metastatic Breast Cancer Network provides background and educational resources on MBC
British Columbia Cancer Agency provides information on cancer drugs and protocols
Canadian Cancer Trials has a search engine with Information on clinical trials in Canada
SHARE Cancer Support - provides telephone support groups and educational programming for breast and ovarian cancer, has MBC specific programming
Memorial Sloan Kettering Cancer Center has a database of herbs, botanicals and supplements
Canadian Virtual Hospice - provides information on palliative and end-of-life care
Metastatic Breast Cancer Canada is a new information and advocacy website for Canadians
Connecting with Others
The Canadian Cancer Society/Canadian Breast Cancer Foundation has expanded its telephone support services to have include team members who are living with metastatic breast cancer and are specially trained to provide emotional support. Call 1.888.778.3100 or follow the link.
(groups include advanced cancer and caregiver support, contact them regarding the upcoming schedule)
For those with bone metastases
The Cancer Cancer Society provides information, research funding, and supports programs and services across the Canada. Examples include the provision of volunteer drivers to doctors appointments and treatments and a free wig service. To find your local branch, start here.
Wellspring – provides programs to support people with all cancers at several locations in southern Ontario and Calgary and Edmonton.
Inspire Health in B.C. - provides programs and services to enhance quality of life, health and well-being of people living with cancer and their families. It offer practical and personalized exercise therapy, stress management, nutrition and counselling services. Some of its services are available to out-of-province cancer patients.
Cancer Support Community / Gilda’s Club - a welcoming place for anyone touched by cancer - adults, children and teens as well as their families & friends.
Saskatchewan Breast Cancer Connect - an advocacy group that empowers and connects those affected by breast cancer (all stages) in Saskatchewan.
Inpower Regina - For people in Regina who have had a breast cancer diagnosis (all stages) and are looking for strength, education, and empowerment from others. Their facebook page is here. Inpowerregina@gmail.com
B.C. Cancer Agency has a very useful site that summarizes the practical supports available in B.C.
Hope and Cope is a Montreal agency that provides psychosocial support and practical resources to those touched by cancer.
In person support groups:
For information on provincial and other financial resources, please contact your hospital's social worker/psychosocial department. Many hospitals also have a drug access coordinator or patient navigator.
Wellspring's Money Matters programs can provide individual guidance and assistance on financial issues such as disability, insurance, return to work, and drug coverage.
Canadian Breast Cancer Network (CBCN) - individual metastatic patients can connect with CBCN to discuss access points and how they can advocate for access to treatments and drugs. Call 613-230-3044
Disclaimer: The organizations and links above are intended as resources and not medical advice. The websites are provided and maintained by third parties, thus MBCAC cannot take responsibility for their content.
Last updated September 26, 2018