A Moment of Truth – Looking Back Almost Three years

Some newer readers have asked how this all began…

I was well aware of the irony of my situation as soon as my urologist uttered the words “you have prostate cancer.” As he started dutifully to pencil out treatment options, I stopped him and asked him to call in his surgeon. As he responded with a puzzled look, I said “let me tell you where I work… I understand all the numbers you shared. I understand the potential aggressiveness of my cancer.”

That discussion took place almost exactly two years after I had started heading up the communications efforts at the Prostate Cancer Foundation. In what my wife calls my New York Minute, everything did indeed change. I was faced with a prostate that had cancer in 50 percent of the gland. My Gleason Score was a 7 (4+3), more aggressive than a (3+4). Most of my biopsy core samples were 65 to 95 percent cancerous. At 51, I knew this could be bad news if I didn’t choose a more aggressive plan of action. It all started with my annual PSA screening. While not incredibly high, my numbers had accelerated, moving from 3.1 to 5.8—nearly doubling in a year’s time. My cancer was off and running and I wanted to catch it.

While still in the exam room, I was overcome with the realization that the communicator had become the subject. Having spent two years encouraging men and their families to make prostate cancer something to talk about, I felt a clear moral responsibility to teach by example and use the opportunity to open up dialog.

The next day, as I broke the news to my staff, I closed by asking how soon we could get a blog up and running. With various incredulous looks, they said two days at the most. We were up and running.

Winer Vinecki and Dan Zenka

With the passing of her father in 2009, and my diagnosis in 2010, Winter Vinecki and I have traveled the cancer journey together. Each in our own way, we are determined to raise awareness and get men talking about prostate cancer.

Nearly three years later, I’m still blogging, now as a Stage 4 patient with metastatic advance disease. My New York Minute (MNYM) has 60,000+ reads a year—twice as much as last year. Every time I hear from a reader who thanks me for openly sharing my journey and insights, I end up thanking them and reminding them it’s a two way street. I get as much therapeutic value out of the blog as some of my readers. Blogging and interacting with patients and caregivers from around the world has given purpose to my disease.

Getting men to talk about this disease has always been an uphill battle—psychologically; they are so different from women. They tend to neglect health issues, much less talk about them. When disease hits them below the belt, it’s often the final guarantee that their lips are sealed.

My experience with the blog, social media, and chat rooms that deal with prostate cancer has convinced me that when provided with an opportunity to avoid the old eyeball-to-eyeball support group circle and open up mostly anonymously online, men will. In fact, it’s amazing how much, and in what detail they are willing to talk. New media has created a new breed of men with new levels of openness. That’s a good thing for all of us on this cancer journey.

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8 Responses to “A Moment of Truth – Looking Back Almost Three years”

  1. Dan,
    So great to hear from you. Hoping your recent set backs are under control and you are on the mend. I appreciate you and your courage to share your experiences.
    You are in my prayers.
    Jen

  2. Dan,

    Ever notice how quickly three years goes by when your having fun…?

    I treasure the group that you assembled last September in DC. That was a time when a dozen men talked turkey, face-to-face–and a dozen good men at that.

  3. Dan:

    You and I have a similar journey, although it has been nearly 5 years for me. My initial diagnosis at age 44 of Stage 3 has morphed in to an even more aggressive metastatic disease. I agree with you on that this disease requires a different level of “support group”. I am currently in a telephone support group run by men that have PCa. It is amazing how open we can be when we do not have to see one another. I think this is part of the uniqueness of PCa — because it impacts what makes a guy, a guy. Anonymity certainly helps us address some of the unpleasant aspects of this disease.

    Keep up the good work and thank you for everything you do to support the fight against PCa.

  4. I just learned about your blog recently. Congrats! and thanks! for sharing your experience. — I was treated at Johns Hopkins in 1996 — a radical prostatectomy not too long after the PSA tests became available. We have lots of family history of deaths from prostate cancer, including my dad, so i didn’t hesitate to do whatever i could to win the battle. I’ve been blessed and am forever grateful. Recently, I was asked to join the JH Prostate Cancer Advisory Board. — I live in the DC area and would love to join you in any meetings you schedule in this area. —

    I hope and pray for your full and complete recovery.

    Harvey

  5. I just learned about your blog recently. Congrats! and thanks! for sharing your experience. — I was treated at Johns Hopkins in 1996 — a radical prostatectomy not too long after the PSA tests became available. We have lots of family history of deaths from prostate cancer, including my dad, so i didn’t hesitate to do whatever i could to win the battle. I’ve been blessed and am forever grateful. Recently, I was asked to join the JH Prostate Cancer Advisory Board. — I live in the DC area and would love to join you in any meetings you schedule in this area. —

    I hope and pray for your full and complete recovery.

    Harvey

  6. Dan,

    I just returned from an US Too prostate cancer support group meeting.

    I am always heartened by the willingness of first-time attendees to share openly all the details of their experience with PC. And, the sensitivity of the other men present in helping them with their journey.

    I only wish more men attended such groups BEFORE they rushed into treatment so that they could benefit from taking the time to understand their cancer and their options.

    Thanks so much for your contributions to the conversation and I wish you continued good health.

    Steve

  7. Dan,

    to you and yours: !!!

  8. Dan-Thanks for your blog-Have t3bn1 prostate ca.RP in 2010.No further treatment yet.Slowly rising psa checked every 4 mos.-Mike