Voices Newsletter                February 2014   
Letter from the MBCN President
Shirley
Shirley Mertz
Greetings!,

 

For those of us who live with metastatic breast cancer, research does not move fast enough.  While patients focus on wanting more new, systemic therapies to stabilize our disease, we may not realize that some researchers and clinicians are looking at attacking metastatic disease using different approaches.

 

One such approach was discussed at MBCN's 2012 Metastatic Breast Cancer Conference in Chicago.  During a breakout session, Dr. Steven Chmura, Associate Professor of Radiation Oncology at the University of Chicago, discussed how he uses concentrated forms of radiotherapy to destroy 5 or fewer metastatic sites beyond the primary site in patients with oligometastasis which is characterized by a single or few detectable metastatic sites.

 

Radiotherapy was discussed publicly recently when six cancer centers across the United States each received $90 million from the billionaire-shipping magnate Daniel Ludwig to study metastatic disease.  One center receiving funds is the University of Chicago, which has been examining if there is a rational basis for optimism about curing some subsets of metastatic disease, like oligometastasis through radiotherapy. 

 

I invite you to view the video about the use of radiotherapy in metastatic diseaseIn it, Dr. Chmura discusses a young metastatic breast cancer patient whose life was transformed by this therapeutic approach.  If you listen carefully, she is still receiving regular "preventive" treatments, but is able to have a good quality of life without pain.

 

Finally, listen carefully to the opening statement by Dr. Ralph Weichselbaum in the video. He says, "It is the common view of many physicians, including oncologists, that it is all over if an adult has metastasis."  That kind of thinking is an obstacle to research that must change.  As patients, we must support those researchers and clinicians who are willing to "think out of the box" about different ways to treat metastatic disease.  Remember, "Informed patients make better doctors."

 

Let's all hope that March 20, the first day of spring, gets here very quickly.

 

Warmest regards,

 

 

Shirley

 
Calendar of Events
We believe it is important for the mbc community to be aware of all programs, webinars and information sessions available. Check our CALENDAR for activities from other breast cancer organizations that we feel would be of interest to you, including: a webinar on metastatic updates from San Antonio, programs in NYC and St. Louis,  healing retreats and the upcoming C4YW conference in Florida.
Thursday FEB 20 Webinar: Metastatic update from the December San Antonio Breast Cancer Symposium by SHARE Cancer Support
Friday FEB 21 Webinar: Understanding Chemo Induced Neutropenia(low white blood cell count)
Weekend FEB 21-23  Conference for Young Women
 
 Controversy on Pancreatic Cancer Action Ad Campaign
The UK based Pancreatic Cancer Action launched a controversial advertising campaign
where pancreatic cancer patients state: "I wish I had breast cancer" or "I wish I had testicular cancer."

Read more, as our MBCN secretary and PR chair, Katherine O'Brien explains the campaign and reaction to it in her blog post: 

 
 
Are you going to C4YW in Orlando?
 
                                                       

Any young woman with metastatic breast cancer who is planning on attending the Conference for Young Women in Orlando on February 21-23, please stop by the MBCN booth and say hello to Katherine O'Brien and Melanie Orme.

                                                                Look for our banner:      

 
Lynn's Story:  Faith and Meaning


Lynn's cancer recurred after 18 years, but she is "not done yet."

 

 
Kathy Coursey-Boes

Kathy with daughter Addie at the MBCN booth in 2010.
We mourn the passing of our dear friend and fellow advocate, Kathy Coursey-Boes.

Kathy was a member of the MBCN board from 2011-2012. She was also a member of the Lobby Day Team that went to Washington DC in 2009 to convince Congress to declare October 13 as National Metastatic Breast Cancer Awareness Day. She wrote of her experience in this

Sincere condolences to her family, especially daughter Addie, who accompanied Kathy to many conferences and events and has a special place in our hearts.
 
 
MBCN is a national, independent, nonprofit, all volunteer, patient-led advocacy organization dedicated to the unique concerns of the women and men living with metastatic breast cancer. We strive to help those living with metastatic breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.

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