How to Find Your Community When Living With Metastatic Triple-Negative Breast Cancer

When you have metastatic triple-negative breast cancer (mTNBC), mainstream breast cancer messaging can sometimes leave you feeling like you don’t fit. Pink ribbon campaigns, survivor celebrations, and phrases such as “beating cancer” don’t reflect what it’s like to live with metastatic cancer.

“The messaging you’re hearing sometimes does not match up to your own cancer experience,” says Monique James, MD, a psychiatrist at Memorial Sloan Kettering Cancer Center in New York City.

If you’ve ever felt like you don’t quite fit into traditional breast cancer spaces, you’re not alone. Whether it’s connecting with others who have metastatic triple-negative breast cancer, leaning on loved ones, or finding support in your everyday life, there are ways to build a support system that feels right for you.

Meanwhile, many breast cancer awareness campaigns focus on early detection, screening, and survivorship. Those messages are important, but they don’t reflect the reality of living with metastatic triple-negative breast cancer and the significant emotional burden that comes with it.

The good news? “Once you’ve adjusted, most people learn not to take [mainstream media breast cancer campaigns] too personally and find what works for them,” says Mary Dev, a senior social worker/counselor at The University of Texas MD Anderson Cancer Center in Houston.

The goal isn’t to avoid breast cancer awareness altogether. Instead, it’s to find spaces and people who understand what your experience is actually like.

Just keep in mind that not every source of support will be a perfect fit for you, says Dev. “Don’t be afraid to try everything and see what lands.”

Lean On Your Care Team

Start by reaching out to your cancer care team, says Dev. “Ask internally what resources are available in your health system that can help you. There are social workers, therapists, psychologists, [and] peer-match programs — so many avenues that offer that one-on-one connection.”

If you don’t know where to start or what to ask for, use these prompts as a guide:

• Want to talk about treatment and side effects? Ask about disease-specific peer groups.
• Want a one-on-one connection? Consider peer matching programs.
• Want anonymity or flexibility? Try online communities.
• Want emotional support? Talk to an oncology social worker or therapist.
• Want normalcy? Seek out friends, family, or coworkers, or try a hobby.

Research Support Groups

If you’re looking for a larger group setting, your cancer treatment center may host a support group for people dealing with metastatic or triple-negative cancer or recommend other local groups, says Dev.

You can also connect with national organizations for metastatic triple-negative breast cancer support:

• Triple Negative Breast Cancer Foundation offers free support services at 877-880-TNBC (8622) or by emailing TNBCHelpline@cancercare.org.
• Breastcancer.org hosts a virtual support group for people with metastatic triple-negative breast cancer on the first Wednesday of every month, along with other metastatic breast cancer groups that may be helpful to join.
• Metavivor can link you up with local peer-led support groups designed specifically for people with metastatic breast cancer.
• Metastatic Breast Cancer Network can connect you with trusted telephone networks, peer match programs, online communities, and regional in-person meetings for people with metastatic breast cancer.
• Share Cancer Support offers access to online support group meetings, community boards, and peer-match programs specifically for metastatic breast cancer.
• The Breasties offers online virtual meetups, as well as an annual Camp Breastie event to connect with others in the metastatic breast cancer community.

Make Noncancer Connections

Find time to stay socially connected outside of the cancer community, too, says James, “whether it’s watching horror movies with a friend, complaining about your commute with a coworker, or whatever it is that keeps you connected on a human level, not just this cancer-world level.”

Set the Tone for Support

The words people use to talk about cancer can also shape how supported — or misunderstood — you feel. Some people embrace terms such as “survivor.” “You are a survivor: You are surviving the disease,” says Dev. Others may prefer language they feel better reflects their experience. “Many people have adopted the word ‘thriver’ instead,” says James.

Be Clear on Boundaries

You can also adjust who you lean on based on how these conversations go. For example, you might decide not to discuss treatment side effects with someone who frequently responds with unwanted advice, says James. Instead, she recommends giving people specific ways to support you, whether that’s checking in on how you’re doing, driving you to appointments, helping with daily tasks, or simply watching a movie together.

And remember, “You don’t have to do this alone,” says Dev. “It’s always easier when you can ask other people for help.”