No One Should Face Metastatic Breast Cancer Alone: Why Finding Your Community Matters

For someone living with metastatic breast cancer, support can mean much more than having someone to talk to.

It can mean finding a person who understands the fear before a scan. Sometimes, it means learning what questions to ask an oncologist. Other times, it may mean getting help with transportation, insurance, treatment side effects or everyday life.

That need for metastatic breast cancer support is showing up in conversations across the country.

A social listening report of U.S. conversations found about 177,547 online conversations about metastatic breast cancer, or MBC, over the past 12 months. Those conversations generated more than 1.5 million likes, comments, shares and other engagements. Isolation, support groups, peer support and community were prominent themes.

The conversations reveal something important. People with MBC are not simply looking for encouragement. They are looking for people who understand what it means to live with metastatic disease.

Metastatic breast cancer is also called stage 4 breast cancer. It means the cancer has spread to another part of the body, such as the bones, liver or lungs. About 5% to 6% of women with newly diagnosed breast cancer already have metastatic disease when their cancer is first detected, according to the National Cancer Institute.

Treatment can slow the cancer and control symptoms. Some people live for years with MBC that is well controlled. However, treatment may need to change when the cancer stops responding to a drug.

That can make uncertainty a regular part of life.

Metastatic Breast Cancer Support Goes Beyond Emotional Support

Fear, anxiety, grief and uncertainty appeared repeatedly in the social listening report. Patients also discussed “scanxiety,” a term often used to describe anxiety around cancer scans and waiting for results. The National Cancer Institute also recognizes scanxiety and financial concerns among the challenges people face when living with metastatic cancer.
But patients were talking about more than fear.

They asked how to find the right support group and manage treatment side effects. They discussed insurance, financial assistance and transportation. They also talked about communicating with loved ones and setting boundaries.

Consider a mother who works while receiving treatment and caring for her family. Her loved ones may provide tremendous support. Still, another person living with MBC may understand some parts of her experience differently.

That person might know what it feels like to wait for scan results. She might have questions to suggest for an oncology appointment. She may know about transportation help or financial resources. Most importantly, she may understand without needing a long explanation.

That type of connection can matter.

Living Beyond Breast Cancer recommends MBC-specific support groups as one option for people who want to connect with others facing similar experiences. The organization also points patients toward oncology social workers, mental health professionals and peer support. Its Breast Cancer Helpline connects people with trained volunteers who have lived experience with breast cancer.

Not every breast cancer support group will be right for someone with metastatic disease.

A person who completed treatment for early-stage breast cancer may be focused on life after treatment. Someone with MBC may be preparing for another scan or another round of ongoing treatment.

Both experiences deserve support. But they are not the same.

Living Beyond Breast Cancer advises patients to keep looking if the first support group they try does not meet their needs.

Sometimes, finding the right community means finding people who already understand the difference.

ALSO READ: Showing Up for Community: NMQF at the Living Beyond Breast Cancer Conference

For Women of Color, Finding the Right Community Can Matter Even More

The need for metastatic breast cancer support exists alongside major racial disparities in breast cancer.

The American Cancer Society reports that Black women have a breast cancer death rate about 37% higher than White women, despite having lower breast cancer incidence. The disparity has remained relatively consistent since the mid-2000s.

These differences cannot be explained by one factor.

Access to high-quality care, early detection and treatment can influence outcomes. Black communities also face broader barriers across cancer prevention, diagnosis and treatment.

The social listening report shows how some of those challenges can enter everyday conversations about MBC.

Patients discussed transportation, insurance, language and access to culturally relevant resources. Black women and other underserved communities also expressed a desire for culturally sensitive support and peer-led groups.

Think about a Black woman who is newly diagnosed and searching for support online. She may want information about treatment. But she may also want to talk with women who understand her family, culture and experiences within the health care system.

Another patient may live far from a major cancer center. Driving to a weekly support group may not be realistic. A private online community could give her another way to connect from home.

The social listening report found that patients want communities that offer empathy and practical help. They also want current treatment information, cultural sensitivity, privacy and opportunities to learn from other patients.

Online communities can help remove some geographic barriers. Living Beyond Breast Cancer, for example, offers online communities and other resources that allow people to connect outside an in-person meeting. The organization also recommends asking a cancer care team about local MBC support groups and oncology social workers.

NMQF is creating another space specifically for people living with metastatic breast cancer.

The MBC Support Group is a private community for MBC patients only. The network is designed to give people living with metastatic breast cancer a protected space to connect with others who understand the experience, exchange knowledge and build community.

It is not a general breast cancer group and is not open to the public. The community is specifically for people living with MBC.

For someone facing metastatic breast cancer, joining a community will not remove every difficult part of the diagnosis. It also does not replace medical care or advice from a cancer care team.

But it can mean having someone to ask when a question comes up. It can mean hearing from another person who has faced a similar decision. And on the difficult days, it can mean knowing there is a community that understands.

No one should have to navigate metastatic breast cancer alone.

To connect with other people living with metastatic breast cancer, learn more about joining NMQF’s private MBC Support Group. Membership is limited to people living with metastatic breast cancer.