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Conference Notes

On November 18th the Metastatic Breast cancer Network (MBCN) held its first conference devoted solely to the concerns of people living with metastatic breast cancer.   The conference was a huge success with over 300 attendees from 19 states and Canada.   Given in conjunction with Memorial Sloan-Kettering and featuring prominent oncologists and researchers, the audience filled their auditorium to capacity. Along with medical presentations were testimonials from women living with the disease.   They described their struggles, triumphs, and coping mechanisms.

Many of the attendees expressed their gratitude to finally be at a conference that dealt with their concerns.

To quote Christine Sansone, one of the patients who offered her testimonial, “I have been to so many conferences where the focus was primary breast cancers and the topic of being metastatic was almost non-existent.  I would look around the room at all the women with mets and all I saw were blank stares.  What about us?  What do we do?  What new therapies can we look forward to that will help keep us, that might prolong our lives for a very long time?  How do I deal with this?  If we don’t get the attention that is deserved, how can we expect non- metastatic women and men to not fear us?  That chapter that no one wants to read; that door that no one wants to open.  That “something” that can potentially happen to you if you have been diagnosed with a primary breast cancer.  That “something” that changes your life, your family’s lives, and your friend’s lives forever.“

MBCN, a patient driven national network of and for people living with metastatic breast cancer, is committed to giving people with metastatic breast cancer greater visibility in the breast cancer community. 

MBCN’s goals:

To help to ease the isolation of living with metastatic disease

To expose misconceptions about the disease –misconceptions held not only by some patients, family and friends but also by some doctors …doctors who give up on metastatic patients too soon

And most important to fight for drugs to extend life as we search for the cure

Nina Schulman, cofounder of MBCN along with Jane Soyer of SHARE, said in her opening address, “the breast cancer advocacy community can’t just be about ‘survivorship.’ It also has to be about those of us who are still fighting and struggling with the disease, about those who may not survive.   And women with metastatic breast cancer are not a separate group. We are 30% of all women diagnosed with breast cancer and until we are recognized and included, we won’t achieve what we are all hoping for – good treatments, a cure, and life extending treatment for metastatic disease, a chance to make it a truly chronic condition.   MBCN believes that women struggling with metastatic disease need a voice and it is now up to us, all of us, metastatic and non-metastatic alike, to speak up.   We who are on the front line in the fight for the cure need everyone’s support.”

You are invited to join the organization and let your voices be heard.   Volunteers for conference planning, advocacy, a speakers bureau, a publications committee and outreach are being encouraged to email mbcn@mbcnetwork.org

 

 

 

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