Living with metastatic breast cancer (MBC), also known as stage 4 breast cancer, can be isolating. Whereas other people with breast cancer may be more focused on treating and eventually curing (hopefully) the disease, people with metastatic breast cancer have different goals and needs.
It’s important to know, though, that you aren’t alone. There are many people who want to support you, from diagnosis through treatment and beyond. The following resources emphasize MBC education and advocacy and offer a community that can 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.
The organization champions projects such as the Marina Kaplan Project, which aims to accelerate research on breast cancer brain metastasis. The Alliance also hosts educational webinars, such as Black Wo(men) Speak, which promotes the voices of members who are focused on serving Black communities. You can read more about the organization’s many other projects on their website.
The 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 their blog.
METAvivor
METAvivor focuses solely on supporting people with metastatic breast cancer. The organization offers information and support for those who are newly diagnosed with MBC, including advice on how to talk to friends and family about the 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 funds research on metastatic breast cancer exclusively, per their website, and hosts several fundraisers throughout the year for this purpose, such as the annual Stage IV Stampede in Washington, DC.
You can keep up with all of these events on the website, as well as read personal stories from 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 their website, you can read up on metastatic breast cancer basics, types, symptoms, and treatment options.
If you need one-on-one guidance or simply a listening ear, you can call the organization’s Breast Cancer Helpline at 888-753-5222 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 private support groups on Facebook.
On the website, you can find and register for upcoming events, including the annual Thriving Together conference, which you can choose to attend virtually, and the Butterfly Ball, a fundraising event created to honor and celebrate people living with breast cancer. Past events have included a pickleball fundraiser and masquerade ball.
The blog features several stories by 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 people diagnosed with breast cancer, including metastatic breast cancer, as well as gynecologic cancers. They offer MBC-focused support groups that meet virtually several times a month, as well as several educational programs and webinars covering topics from how to manage “chemo brain” to exercising with MBC.
If you have questions, or just want someone to talk to, you can access the Metastatic Breast Cancer Support Line by calling 844-ASK-SHARE (844-275-7427) and pressing 6. There, you’ll automatically be 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 traveling with MBC, the importance of gratitude in the midst of a metastatic breast cancer diagnosis, touching stories from those who’ve lost a loved one to the disease, and more.
Young Survival Coalition
The Young Survival Coalition, founded in 1998 by a group of young women who had been diagnosed with breast cancer, offers an abundance of information on metastatic breast cancer, such as up-to-date 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 guide on all things MBC, covering topics ranging from diagnosis and treatment to living with the disease.
The organization offers peer matchmaking support, which partners adolescents and young adults with breast cancer to young cancer survivors who’ve had a similar experience. You can also connect with others living with this diagnosis online or in person by joining one of the MBC virtual hangouts or taking part in a Face2Face 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 from diagnosis through treatment. CancerCare’s free 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 services are available in both English and Spanish.
Through CancerCare, you can join others who are actively being treated for MBC in either of two support groups centered on fostering a community for people 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.
For more information on MBC, you can check out CancerCare’s Connect Education Workshops, which you can filter by diagnosis. They cover topics such as advancements in treatment, how to manage treatment side effects, and quality of life for those living with metastatic breast cancer.
You can also read through an extensive library of publications that offer information on everything from questions to ask your doctor to understanding treatment options.
