When someone learns they have metastatic breast cancer (MBC), also known as stage 4 breast cancer, it can be devastating and difficult to imagine what the next week, month or year will look like. Jake, Cyndi, and Julia are all living with MBC and spoke with Komen about what survivorship means to them.

MBC Doesn’t End 

There is currently no cure for MBC, so everyone’s path through survivorship is unique. Jake, a man living with MBC, was unfamiliar with the word ‘survivorship’ in the beginning. “Men are mostly on the outside of survivorship because they are not included in the mainstream breast cancer stuff,” he said. Jake now realizes that survivorship starts the day someone is diagnosed with MBC, because for those living with MBC, treatment will never end. 

When Cyndi was first diagnosed with MBC, she was surrounded by a community of support, rallying to cheer her on through treatment in those first few years. But as time went by, members of her community drifted away. “They did everything to support me in the early years,” Cyndi said. “But then I didn’t get really sick and I didn’t pass on. I’ve been stable.” Cyndi is still receiving treatment and still gets nervous before her scans, but she is also optimistic that she will get as much time as possible.  

Julia has been told she doesn’t look sick because others don’t understand what living with MBC can look like. “Just because I am smiling, doesn’t mean I am not in pain,” she said. 

Guilt and Gratitude Can Coexist 

Individuals living with MBC can experience an array of complex emotions that can change from day to day, including anxiety, depression, loneliness, grief and guilt. However, they can also experience peace, optimism, empowerment, and gratitude. 

Survivor’s guilt is common. The longer someone survives MBC, the more loss they’ll experience. Friends and fellow ‘cancer club’ members will pass away. Cyndi said she experiences survivor’s guilt when she makes it to certain milestones, and will ask herself, “Why am I still here?” 

Guilt and gratitude can coexist. While someone may feel guilty for surviving, they can simultaneously feel gratitude that they get another day. Likewise, someone may feel grief at the loss of a friend, but gratitude for that friendship. Coping with conflicting emotions can be another significant challenge in  living with MBC.  

Survival as Service 

Many people living with MBC survive and even thrive by helping others facing similar circumstances. Getting involved and finding community can be a great personal support while also providing the opportunity to connect with others.  

“Surviving with MBC is not something to apologize for,” said Julia. “Survivorship can feel complicated. I hope to be a support for others, because this mindset has helped me heal in a way.” Likewise, Jake finds that sharing his story is an important part of his journey. “I use my voice and platform so other people don’t feel afraid, and that’s the most important thing,” he said. 

When someone is ready, there are many options for them to get involved, and they may find renewed purpose, strength and empowerment by using their voice and platform to advocate for the MBC community.  

If you need emotional support or access to information and resources, please contact the Komen Patient Care Center for help. Call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465- 6636) or email helpline@komen.org if you need support. Se habla espanol.