Why I Became a Cancer Advocate: Amy

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Why I Became a Cancer Advocate: Amy

by Amy Mattes, LIVESTRONG Leader
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#LIVESTRONGLeader Amy Mattes lost a loved one to #cancer, and used it as fuel to advocate on their behalf. Join her: http://bit.ly/1NobEks
Tuesday, May 10, 2016 - 7:00am

CAMPAIGN: LIVESTRONG Changing the Cancer Care System


Walking out of a friend’s funeral that had lost her battle with leukemia, and watching her three young daughters, husband, family and community grieving, felt very unnecessary. In addition, her twin sister had stage IV lymphoma.  I was forever changed that day.

I vowed to use my experience and knowledge and advocate in the fight against cancer.   As a cancer registrar, I have witnessed almost every aspect of cancer. A very insightful aspect of my job has been participating on a multidisciplinary team of physicians, nurses, social workers, and pastoral care staff. We discuss our patient’s needs not only at the medical level, but a psychosocial level as well.  I came to understand the impact of cancer beyond the diagnosis. Specifically, that cancer, a mass that metastasizes to other parts of the body, takes over physically and mentally.

In 2007, I started my advocacy work by joining Team LIVESTRONG on RAGBRAI.  (Not having ridden a bike since I was 10) I bought a bike, shoes and gear; clipping in for the first time that Sunday morning I immediately tipped over.  I got back up, and by the second day I was keeping up with the big boys.  A group of strangers became a family committed to riding for cancer. During the week long trip across Iowa, my LIVESTRONG jersey opened the conversation of cancer. I was touched by so many amazing stories from people all over the world.  I soon was volunteering, holding events, speaking in public forums, providing not only guidance and resources, but hope and light.  I volunteered as a LIVESTRONG leader on the Iowa Cancer Consortium; and engaged in numerous other ways.

1 in 3 women and 1 in 2 men will be diagnosed with cancer.  Those odds became reality in our family when in 2011, I was diagnosed with thyroid cancer. At that time, my husband and I were both in our 30s, and my three children were under the age of 10. I was able to provide comfort and reassurance to my family and friends.  I knew that thyroid cancer had a 95% survival rate for the diagnosis and stage; and the treatment was minimal.   The thyroid controls most of your bodies’ functions, so I absolutely feel my diagnosis every day in terms of weight gain, hair loss, fatigue, skin issues, etc. I am not physically the person I was before cancer, but I am stronger in many ways.  When it comes to cancer, I am thankful for the hand I was dealt.

Cancer is a social phenomenon in our culture today; no one goes untouched. Through this phenomenon we have reached a tipping point of how cancer is viewed, researched and managed. I was introduced to OVAC by the LIVESTRONG Foundation.  OVAC has given a voice to so many when they felt they had none.  Sharing their stories keeps a personal aspect to our advocacy for cancer funding.    My hope is that if there are not cures for cancer, then our efforts will lead to it becoming a chronic disease.  This will be my third year participating in OVAC since 2009.   I am so thankful and proud to be a part of this wonderful group and collaboration.