BY GUEST BLOGGER | SEPTEMBER 28, 2012
Shortly after I was diagnosed with metastatic breast cancer in 2009 at age 43, the Chicago Tribune published a series of articles highlighting breast cancer awareness month. I was extremely upset that there was no mention whatsoever to the risk of recurrence or any acknowledgement of stage 4 breast cancer. Posting some comments in the online reader response section made me feel better, but even as I hit the "send" button I reflected that no one would ever read my lone response tucked away in the massive archive of a major metropolitan newspaper.
But Ellen Moskowitz did. Within minutes, she contacted me to thank me for my comments and to encourage me to get involved with the Metastatic Breast Cancer Network (MBCN), an all-volunteer patient advocacy group. It was the first of many such emails. Using Google, Ellen, then the president of MBCN, kept a close eye on metastatic breast cancer developments. She was quick to pounce on any misinformation or misrepresentation of this often neglected patient population. Sometimes I wished she weren't quite so zealous, as her crusade resulted in many writing assignments for me.
In October 2010, I met Ellen in person at MBCN's Fourth Annual Metastatic Breast Cancer Conference at Indiana University's Simon Cancer Center. I went to the conference with some trepidation--would it be worth giving up my weekend and driving to Indianapolis? What if the presentations were boring? What if the attendees were all older people? What if the food was bad?
Well, I needn't have worried. The conference was fabulous, to use one of Ellen's favorite words. Prior to attending the conference, I hadn't met anyone with metastatic breast cancer. To be in an auditorium surrounded by people of all ages and backgrounds, all dealing with a metastatic breast cancer diagnosis, was amazing. The presentations were uniformly excellent. Dr. George Sledge, then president of ASCO, was among the speakers and to this day I continue to refer to his remarks on the tempo of metastatic breast cancer. It really helped me understand what I was dealing with. The food was awesome, too!
A person living with metastatic breast cancer introduced each expert speaker by sharing her own MBC story. That was so incredible to hear other people's experiences. Some were funny; all were very informative and inspiring.
If you have metastatic breast cancer, I hope to meet you in Chicago on Oct. 13. Because I will be among the hundreds of people coming from across the U.S. and Canada for the 2012 Metastatic Breast Cancer Network's (MBCN) Conference at Northwestern University's Robert H. Lurie Medical Research Center. The conference is open to all--people with MBC, family, friends and caregivers. A $35 registration fee covers the costs of two receptions and all meals. Some scholarships are available for hotel and travel costs.
Expert speakers will address the basics of MBC. Specific sessions are dedicated to hormone-positive, HER2-positive and triple-negative disease. There are also sessions detailing bone mets, brain mets and pain management as well as panel discussions on living with metastatic breast cancer. Attendees will hear about the latest research and learn how to find clinical trials.
My friend Ellen died earlier this year after living with metastatic breast cancer for almost 10 years. I know that she would be so very proud the 2012 conference is being held on October 13, National Metastatic Breast Cancer Awareness Day. (MBCN lobbying efforts paid off in October 2009 when the Senate and House each unanimously passed a resolution to support the Oct. 13 designation.)
The first MBCN conference was held at Memorial Sloan-Kettering Cancer Center in 2006. Subsequent conferences have been held at M.D. Anderson, Dana-Farber, Indiana University's Simon Cancer Center and at Johns Hopkins. Chicago is my hometown and I am honored MBCN is meeting here next month.
"Over the years I developed incredible admiration and respect for all of us who do what we have to do to stay alive ... and I continue to marvel at the warmth extended between all members of our metastatic community," Ellen wrote in a 2011 email introducing her successor, current MBCN president, Michele Przypyszny. "So much has changed for us since I was diagnosed. We need to keep this awareness growing. We need to keep ourselves educated--our conferences are always FABULOUS! We need to continue to be connected and we need to step up to the plate and empower ourselves!"
Amen to that.
I know where I will I be on Oct. 13. I hope you will be in Chicago, too! For more about MBCN and the annual conference, see mbcn.org.
Katherine O'Brien volunteers with the Metastatic Breast Cancer Network. She has been living with metastatic breast cancer since 2009. Contact her via MBCN at firstname.lastname@example.org.
Highlights of the 2012 MBCN Conference include:
>Understanding MBC, How It is Followed in the Clinic and When to Use Standard Care vs. Clinical Trials (Dr. Virginia Kaklamani)
>Hormone Positive MBC (Dr. Ruta Rao)
>HER2 Positive MBC (Dr. Virginia Kaklamani)
>Triple Negative MBC (Dr. Funmi Olopade)
>Acupuncture and Chinese Herbology (Virginia Burns)
>Living with MBC for those 40 and Younger (Roz Kleban)
>How Do I Find a Clinical Trial? (Elly Cohen)
>Role of the Caregiver (Dr. Sarah Rosenbloom)
2012 MBCN Conference at a Glance
Saturday October 13, 2012 from 8 am to 5:30 pm EDT
Robert H. Lurie Medical Research Center
303 E. Superior Street
Chicago, IL 60611
Metastatic Breast Cancer Network
888-500-0370 (voice mail)