Resources for People Living With Metastatic Breast Cancer
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While living with metastatic breast cancer (MBC) can feel isolating, there are people with the disease who want to support you throughout your diagnosis, treatment, and beyond. The following resources put an emphasis on MBC education and advocacy, while also offering a community to help you navigate cancer care and life with metastatic breast cancer.
Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance strives to serve people with MBC by extending and enhancing their lives. The organization works toward this goal by advocating for more MBC research, improving awareness and access to clinical trials, and educating communities about the disease and available resources. People diagnosed with metastatic breast cancer can join MBC Connect — a free online tool to record your diagnosis and treatment information, find clinical research trials near you, and document your experiences. You can read more about the organization’s many other projects on its website.
MBC Alliance also offers guidance on how to find the right care team and decide on the right treatment plan for you. Additionally, you can find impactful personal stories, and stay up to date on the latest in MBC news and research on its blog.
Metastatic Breast Cancer Project
The Metastatic Breast Cancer Project (MBCproject) focuses its efforts on research. Backed by several well-respected breast cancer organizations — including the MBC Alliance, METAvivor, and Living Beyond Breast Cancer — MBCproject gives you the chance to join the fight against MBC.
If you choose to participate, MBCproject will connect with your healthcare team to collect your medical records and samples of your blood and tumor tissue to conduct DNA and gene research in order to get a better understanding of the disease. They’ll also send you an easy-to-use kit so you can collect a saliva sample and return it to them for their research. As they study your samples, they’ll give you regular updates on what they find, and how they can use your information to advance MBC treatment for people all over the world. You can learn more and opt to join the project on its website.
METAvivor
An organization focused solely on supporting those living with metastatic breast cancer, METAvivor offers information and support for those who are newly diagnosed with MBC, including advice on how to talk to friends and family about your diagnosis, as well as how to cope with the news yourself.
METAvivor also holds in-person peer-to-peer support groups all over the country. You can even apply to lead your own support group if there isn’t one in your area. METAvivor is the only organization in the country that exclusively funds research on MBC, per its website, and hosts several fundraisers throughout the year for this purpose, such as the Pittsburgh Metsquerade and the annual METAvivor Gala.
You can keep up with all these events on the website, as well as read personal stories from dozens of people living with the disease, with topics ranging from getting diagnosed to opening up to friends and family about the disease.
Living Beyond Breast Cancer
Living Beyond Breast Cancer is a nonprofit group that offers a community of support for people with any type of breast cancer. On its website, you can read up on metastatic breast cancer basics, covering MBC types, symptoms, and treatment options. If you’re in need of one-on-one guidance, or simply a listening ear, you can call the organization’s Breast Cancer Helpline and get matched with a trained volunteer who has also been diagnosed with breast cancer and knows what you’re going through, or you can join one of the online support groups on Facebook.
On the website, you can find and register for upcoming events, including the Thriving Together conference, which you can choose to attend virtually; the pickleball fundraiser, Dink Beyond Breast Cancer; and the 2024 Butterfly Ball, a fundraising event created to honor and celebrate those living with breast cancer. The blog features several stories by other breast cancer survivors, which you can filter based on cancer stage, type, treatment, and more. You can also check out the news section to discover exciting developments in research and newly available treatments.
SHARE Cancer Support
SHARE Cancer Support is an organization created for those who are diagnosed with breast cancer, metastatic breast cancer, and gynecological cancers. It offers MBC-focused support groups that meet virtually several times a month, on top of several educational programs and webinars covering topics from how to manage “chemobrain” to exercising with MBC.
If you have questions that need answers, or just want someone to talk to, you can access the Metastatic Breast Cancer Helpline by dialing 844-ASK-SHARE and pressing 6. There, you’ll be automatically connected with a peer who shares your diagnosis and experience. You can also join SHARE’s metastatic breast cancer online forum, where volunteers and others with the disease gather to share information and stories. Additionally, on SHARE’s website, you can listen to episodes of the organization’s podcast, Our MBC Life, which covers anything from traveling with MBC, to the importance of gratitude in the midst of an MBC diagnosis, to touching stories from those who’ve lost a loved one to the disease.
Young Survival Coalition
The Young Survival Coalition, an organization founded in 1998 by a group of young women who had each been diagnosed with breast cancer, offers an abundance of information on metastatic breast cancer, such as up-to-date MBC statistics, guidance on finding clinical trials near you, and a breakdown of common terms used when talking about MBC. On the organization’s site, you can access “Metastatic Navigator,” a free-to-download guide on all things MBC, covering topics ranging from diagnosis, to treatment, to living with the disease.
The organization offers peer matchmaking support for adolescents and young adults (AYA) with breast cancer, which partners you with another AYA cancer survivor with a similar experience. You can also connect with others living with this diagnosis both online and in person by joining one of the MBC virtual hangouts, or taking part in a Face 2 Face (F2F) support group near you.
CancerCare
CancerCare provides free support services to anyone with cancer, including metastatic breast cancer. The organization offers financial assistance to help pay for medical costs, transportation, and childcare. They also have counseling provided by oncology social workers to help you care for your mental health throughout your diagnosis and treatment. CanceCare’s telephone resource navigation is designed to walk you through the process of cancer treatment and alleviate some of the anxiety-inducing guesswork that can come with an MBC diagnosis. The counseling and telephone resource navigation services are available in both English and Spanish.
Through CancerCare, you can join others who are actively receiving treatment for MBC in either of two support groups centered on bringing community to those with this particular disease. Both groups are led by an oncology social worker, and encourage members to share their personal experiences, advice for living with the disease, and recommended resources.
If you’re looking for more education on MBC, you can check out CancerCare’s Connect Education Workshops, which you can filter by diagnosis and covers topics like advancements in treatment and quality of life for those living with metastatic breast cancer, and how best to manage treatment side effects. You can also read through an extensive library of MBC information, which offers information ranging from questions to ask your doctor after receiving your diagnosis, to tips on caregiving if your loved one has MBC.
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