MBC is breast cancer that has spread from the breast to other parts of the body, such as the liver, lungs, brain, or bones. It’s also known as stage 4 breast cancer.
Many people who develop MBC have already been treated for breast cancer in the past. Months or years after their original treatment, breast cancer cells may spread and grow in other parts of their body.
Receiving a diagnosis of MBC can be “hugely overwhelming,” Hope Wohl, CEO of the nonprofit organization Breastcancer.org, told Healthline.
“Everyone experiences it in their own unique way, but people often feel a loss of control. There’s a lot of fear and stress that comes up. There can be anger, depression, confusion, loneliness,” Wohl said.
“They are also figuring out how to navigate this with family, friends, employers, and their healthcare team. Suddenly, there’s a whole lot of people to communicate with about something that they themselves are just starting to wrap their mind around,” she continued.
To help people cope with the flood of emotions, questions, decisions, and challenges that can come with MBC, Breastcancer.org offers a variety of information and support services.
We spoke with Wohl to learn more about how her organization is helping people manage this disease.
When someone learns they have MBC, they may have many questions about the condition and their treatment options. It can be difficult to know where to find the answers and support they need.
“Every one person’s diagnosis of metastatic breast cancer has its own unique variables, and really helping people sift through and understand that is a key piece of helping them gain some sense of control,” Wohl said.
“One of the core tenets of Breastcancer.org is that we want to empower people with knowledge. Knowledge is power,” she continued.
To help people gain a greater sense of understanding and control, Breastcancer.org provides medically vetted information about the signs, symptoms, diagnosis, and treatment of MBC. It also offers tips for managing cancer care, communicating with loved ones, finding emotional support, and navigating daily life with the disease.
“We have medically vetted content about metastatic breast cancer, we have research news, we have blogs, we have podcasts, and we have videos, which are often helpful for hearing people in similar situations talk about their experiences and how they’ve gotten through it,” Wohl said.
“Then we of course have our peer-to-peer digital community of people in our discussion board, where metastatic breast cancer is one of the very most active forums,” she added.
Breastcancer.org’s community discussion board offers a space where people with MBC can share practical tips and life stories, and seek emotional and social support.
“It’s always moving to me when I go in and watch how people support each other. You know: How did that test go? We’re with you. We’re thinking about you,” Wohl said.
“We hope that most people are fortunate enough to be surrounded by people who care and love them, but it’s a very different kind of experience to get support from someone who is walking more in your shoes and understands it,” she added.
Wohl told Healthline that many people with MBC feel the need to stay strong for their children, spouses, or other members of their communities.
The community discussion board provides a place where they can openly express how they’re feeling among others facing similar challenges.
“It’s a place where they can really just be, and share whatever’s going on, and know that others will be there to help them through it,” Wohl said. “I think that’s really important.”
The treatment process for MBC can feel like a marathon rather than a sprint.
People with MBC may need to try a variety of treatments to slow the progression of the disease and manage their symptoms. Although MBC is rarely cured, new treatments are allowing many people with the disease to live for longer than ever before with a higher quality of life.
“People who are diagnosed with metastatic breast cancer come to understand that they’re going to have to keep learning and dealing with this for the rest of their lives,” Wohl said.
“So they have to take it step by step. Try to unwind the enormity of it bit by bit, and be as gentle with themselves as they can be as things come up that may surprise them,” she continued.
As a person’s condition or life circumstances change or new treatment options become available, they may face new opportunities or challenges. Their support needs may also shift.
“There may be a point at which all someone needs is a virtual hug. That’s all. They don’t want to learn anything,” Wohl said.
“Someone else, it might be quite the contrary. They’re like, ‘Just tell me what’s going on and we can deal with the emotions later,’” she continued.
Breastcancer.org strives to meet people where they are by providing a wide range of information and support resources to help them through every stage of the process — from diagnosis, to early treatment, to clinical trials, to end-of-life-planning, and everything in between.
Although MBC isn’t an easy condition to manage, there’s reason for hope.
“Metastatic breast cancer is not hopeless,” Wohl said, “and people are living longer and longer with it, some with quite extraordinary quality of life.”
Breastcancer.org and other patient advocacy organizations may help people find the information and support they need to understand and manage MBC, while connecting them to other community members who are going through similar experiences.
“Find people and resources that you can really trust and feel safe with. Find a team that can support you, both from an informational and an emotional point of view,” Wohl advised.
“And like we do with so many things in life, find a few people who can be your real go-to, be they others with metastatic disease, friends, family, or healthcare professionals,” she added.