• MBC Patients Need More



    Blog by Jacqueline McKnight, Scientific Programs Specialist at Susan G. Komen

    Metastatic breast cancer (MBC), or Stage IV breast cancer, is different from early-stage breast cancers because it cannot be cured.

    People living with MBC transition from one treatment to a new treatment for the rest of their lives.  Metastatic Breast Cancer Network (MBCN) President, Shirley Mertz, wants that to change.  Her mantra, “Scan > Treat > Repeat: Stage IV Needs More” was printed on t-shirts, rally towels and power point slides at the Komen-supported  MBCN 8thNational Conference.  Advocacy was a major theme of the meeting: personal advocacy, patient advocacy and political advocacy were all highly encouraged.

    During the opening session, women and men living with MBC were asked to stand and then sit down as the years that had passed since their diagnoses were read aloud.  Those standing the longest had been living with the disease for 16 and 17 years. Approximately 75 percent of the attendees had never been to a MBCN meeting. Many had never spoken to anyone else who lives with the disease.  Learning that people can live and thrive with MBC was a powerful and emotional experience.

    Speakers shared their stories and offered advice. Cathy Spencer, a former car salesperson turned poet who didn’t think she would live to see her 50th birthday, received resounding applause when she said, “I’ve stopped living the life I had planned and am now living the life that is waiting for me.” Participants laughed together watching a video called “Dumb Things People Say to people living with Metastatic Breast Cancer,” cried together listening to survivor stories, and found encouragement during networking times relating to and understanding the journeys of their peers.

    The information provided by experts at this meeting included Komen Scholars Drs. Elizabeth (Claire) Dees and Lisa Carey, along with Brinker Award Winner Hyman Muss. These experts spoke on a variety of topics from clinical trials to the latest treatments to how to speak with your children. The sessions were not only of the highest caliber, but actionable and useful to attendees.

    It was my pleasure to represent Susan G. Komen at this impactful meeting.  Some people living with MBC feel lost at Susan G. Komen events, overwhelmed by the pink and by messages of survivorship.  Some question if they are welcome or belong anywhere in the continuum of Komen’s support network.  Many don’t know about all of the services, research and conference support that we invest for those living with MBC.

    Komen honors the memory of its namesake and all those who have been lost to MBC by providing travel scholarships to this conference for those who now live with MBC in the hopes of reducing their isolation and building knowledge about the medical advances that help people live longer with MBC. There is a place at Komen for those living with MBC and I am honored to have been among those who shared that message at the MBCN 8th National Conference!

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