We Deserve to Be Heard: Making an Impact for Metastatic Breast Cancer

February 5, 2016

Jean Burns reflects on her experience in our 2015 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program. Raise your voice and break the silence – apply to the 2016 program today.

A diagnosis of metastatic, or stage IV, breast cancer (MBC) in December 2013 left me reeling.  I was stage IV right out of the gate – de novo. I hadn’t seen that coming and I felt I had lost all control over my life. I would be in treatments for as long as I lived (median survival after an MBC diagnosis is 3 years – a statistic that has not significantly improved in more than 20 years.)

As most do, I turned to the Internet and researched everything I could find about MBC and what to expect. Once I had educated myself, I still felt this overwhelming sense of impotence.  I joined Facebook groups and reached out to MBC organizations to figure out how to cope. These provided me with both a sense of community and reminded me that I was not alone in this.  So many were in my same boat and had such great experiences and information to share.  I spent many hours on the Living Beyond Breast Cancer (LBBC) site, as it had so many resources that were useful and informative.

ACFWLWMBC2015 (110).JPG Jean Burns (right) with fellow Hear My Voice Volunteer Maura Bivens. 

I also signed up to go to LBBC’s Annual Conference for Women Living With Metastatic Breast Cancer held in Philadelphia in April 2015, because it sounded like a promising way to network with MBC healthcare professionals, patients, and advocates. I applied for the Hear My Voice: Metastatic Breast Cancer Outreach Program because I felt like this would be a chance for me to turn the feeling of impotence into something powerful and make an impact. The HMV program was new in 2015 and it promised the opportunity to get involved with promoting greater awareness around MBC, impact research funding for MBC, and generally put the reins back in my hands, so I felt I was doing something productive about my disease.

I participated in the day-long training for the HMV advocates the Friday before the conference.  It really provided a good foundation for what we wanted to do as a group. There were great brainstorming sessions and I soon realized that this group of advocates was a powerhouse that would have an important impact.

We learned how to leverage our current skills (are you a good communicator, a whiz at Twitter, can you review research grants, etc.?) to advocate for MBC patients. Everyone had a niche and everyone fit into a role of some type. Each role was equally important, too.  The exchange of ideas and information was breathtaking and gave me new energy and a sense of hope and inspiration.  Some people attended a “die-in” at the end of the conference to physically represent the 113 people that die of MBC each day in the U.S.  It was a powerful and poignant message.

I got to work right away after the conference and training. For me, I knew I wanted to blog about having cancer and how it impacted my life.  I started my blog, mylittlepinkmonkey.wordpress.com, as a way to communicate with people about the impact of MBC on me and my family.

I also was interviewed on the iHeartRadio show with Melanie Young – Fearless Fabulous You to discuss the impact of an MBC diagnosis and did a local television interview as well for our ABC affiliate, KMGH-TV Channel 7 in Denver, Colorado.  The interview I did for Channel 7 can be seen here . I participated in each interview with the hope of explaining MBC and focusing on the need for more research funding for stage IV breast cancer. Friends held a fundraiser among friends and family and we were able to raise approximately $15,000 for METAvivor to use toward MBC research grants – all 100% of the funds. I wrote to my state senators and representatives asking them to support better funding and the National Institutes of Health bill to inject much-needed monies toward researching disease.

The 2015 HMV group continued to meet via telephone conferences throughout the year, and it was amazing to hear what the different members were doing. Starting yoga programs, contacting various breast cancer organizations to discuss MBC and request better focus on MBC patients, coordinating another die-in in Washington, D.C. on October 13th (MBC Awareness Day), sitting on Department of Defense committees about research funding, and so much more.

My takeaway after being an HMV volunteer – there is no reason to let an MBC diagnosis steal your sense of empowerment.  If you are looking for a way to take back some control and contribute toward making MBC a chronic condition and one that will hopefully be cured in the future, sign up to be an HMV volunteer.  Your participation will only continue to help bring awareness to MBC and if we all work together to have a voice, that voice will be heard by the larger breast cancer community. We deserve to be heard – but we have to take the laboring oar ourselves. This is our lives at stake, and being an HMV volunteer is one way to stand up and let the world know how important your life is.

Jean is a 49-year-old wife and mother of 2 boys (14 and 10) who works in the legal department of a large healthcare IT company handling their intellectual property matters. A Colorado native who loves hiking and enjoys the serenity of nature. Jean enjoys watching her boys play sports and her husband coach!  

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