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Wednesday, April 5, 2017

Guest Blogger: Steve Hentzen

My name is Steve Hentzen, and when I was 46-year-old, as a single father of my son Joel, who is 13, I tried to go to a Boy Scout camp that required a medical release form. But my doctor insisted on doing a physical before signing it. Because of this, a life-saving PSA test was given. A PSA of 19 led to a biopsy, which discovered a Gleason score of 9, and I had to tell my son that I had prostate cancer.

After surgery found clean margins, I felt I could embrace my second chance at life, but Joel struggled with not believing his dad was okay. It was a tough year, but we marched on.

One year later, prior to a routine screening, I met with a pastor who had been thinking of us and had an idea that my doctor could put on a staged doctor’s appointment for Joel to explain to him that his dad was fine, and they hoped this would help alleviate Joel’s anxiety and help him move on. But then, my doctor called to tell me that Joel’s worries were confirmed because my cancer was back.

And, on that same day, a nurse handed me a flyer for a Cancer Support Community affiliate called Gilda’s Club of Kansas City.

I knew that we couldn’t go through this journey again alone and turned to Gilda’s Club Kansas City, where Joel ended up being one of the first kids they ever helped. During my daily radiation treatments for 8 weeks, Joel and I leaned on Gilda’s Club. Eventually, we got the news that the treatment was successful!

During my time at Gilda’s Club, I met other prostate cancer survivors which sparked the idea that we needed a place for others facing prostate cancer to meet, which Gilda’s Club provided. Thanks to the momentum of Prostate Cancer Awareness Day and meeting with fellow prostate cancer survivors, Caeser Blevins, Mike Mulcahy, and Sali Katz, we were able to start the Prostate Network. This is a survivor-led, volunteer-powered, not-for-profit, impassioned support group focused on helping men deal with issues related to prostate cancer.

In the fall of 2016, we discovered there was a complimentary organization, ZERO The End of Prostate Cancer, which champions strategic alliances with national and local organizations and politicians to protect critical government funds for prostate cancer research. Mulcahy, Blevins, and I participated in a run/walk to support ZERO in Kansas City, which led to our attendance at the 2017 ZERO Patient Summit. We hope to continue helping ZERO Cancer raise funds for research programs, and when I saw a sign for the Cancer Support Community at the summit, I recalled how my advocacy for prostate cancer started at Gilda’s Club Kansas City, an affiliate of the Cancer Support Community.

If you or someone you know is impacted by cancer, check out Cancer Support Community affiliates for local support, or call the Cancer Support Helpline for over-the-phone support about any aspect of your cancer journey at 1-888-793-9355. Consider joining our Cancer Experience Registry, where you can share your cancer experience to help shape high-quality and comprehensive cancer care. And consider joining our Grassroots Network to advocate for changes in the cancer community.

Category: Cancer Advocacy