Thank you for your input!

January 25, 2012

Many thanks to those who responded to “Share With Shirley” in which I asked MBCN website users to identify metastatic breast cancer patients’ needs which, if met, could change outcomes in the clinic.  The responses, from email and posts to this blog, were very articulate and thoughtful.

Know that I will share your messages strategically with various breast cancer organizations, researchers and scientists in 2012.

On January 26-27, I will be participating in the “Komen Roundtable for Metastatic Breast Cancer “ in Dallas. Texas.  Komen seeks suggestions from invitees to help the organization formulate and institute ways to help those who have metastatic breast cancer.   As many of you have said, we want large breast cancer organizations to work together and to share with the public the “whole story” about breast cancer—especially metastatic breast cancer.  And, we want the percentage of funds that goes to research that will turn metastatic breast cancer into a truly long term chronic disease increased dramatically.

Stay tuned….more to come!

In the meantime, I urge each of you to be open to sharing your story and the needs of metastatic breast cancer patients with others wherever you are.  We CAN change outcomes of metastatic disease if we speak up clearly, strongly and often.

Let me know what you are doing so we can collaborate.

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Share with Shirley

January 5, 2012

As a Board Member and Advocacy Chair for the Metastatic Breast Cancer Network, I want the new year– 2012– to be an important milestone for the metastatic breast cancer community.  We deserve to have better outcomes in the clinic, as those with early stage breast cancer have experienced.  I am not talking about a cure.  Rather, I am talking about each of us having access to targeted, personalized treatments for our particular type of metastatic breast cancer so that we can live many years with a good quality of life.  Put another away, if we cannot be cured, then we deserve research that develops treatments which transform the disease into a truly chronic disease, like diabetes or HIV-AIDs.

HOW DO WE MEET THIS CHALLENGE?

One way is to articulate clear requests to those who can improve or transform our lives. 

WHAT WOULD YOU SAY…

if someone were to ask you “What are the needs of metastatic patients so that there would be a change in the outcome of metastatic breast cancer?”  Could you share 3 or 5 unmet needs that would make a big difference, if they were met?

I INVITE YOU TO SHARE…

what you would ask some or all of the following groups to do differently to change and improve the lives and futures of metastatic breast cancer patients.  Please post your response below or email to s.mertz@mbcn.org. We will compile all responses and summarize. Thank you!

WHAT WOULD YOU ASK OF…

Your oncologist
Your local cancer center
Your family members and/or friends
Your local congressperson or senator
The President
Pharmaceutical Companies
Researchers and scientists
US Food & Drug Administration (FDA)
Breast Cancer Organizations
Early stage breast cancer survivors
Yourself