One day, on my way to work, I turned on the radio. I usually listen to NPR in the morning, but for some reason I switched it over to another station. I can’t remember what station it was on, but they were in the middle of an interview with a man who worked for the Prostate Cancer Foundation. The interview was really good, and I was inspired by what this man had to say. I was so impressed, I stopped the car and looked him up on my phone. I would eventually reach out to him to learn more about his story and his battle with prostate cancer. His story is a good one… that’s for sure. The guy also blogs. We had something in common right from the start! It is my pleasure to introduce you to Dan Zenka.
Dan, I heard part of your story on the radio one day. I have been intrigued to learn more about you since. You were on there talking about prostate cancer. Before we get too far into this, what’s your story?
I have to admit, there is a bit of irony to my story… I was already working at the Prostate Cancer Foundation for two years in my capacity as VP of communications… I had been having my annual PSA screening and DRE since I was 40 and suddenly, I was diagnosed with what appeared to be an aggressive form of prostate cancer. Within a year my PSA nearly doubled, going from 3.1 to 5.8. The biopsy revealed more than 50% involvement of my gland and a Gleason Score of 7 (4+3).
As my urologist dutifully started to pencil out my treatment options, I stopped him and said, “You can stop… I know we are headed for surgery.” He looked at me with surprise in his eyes until I told him where I work. I shared with him that I was tracking with everything he was telling me and that I understood the potential severity of my situation.
If I had known that I was going to one day be diagnosed and decided to set my sights on my current job, I doubt I would have been able to make that happen. Life doesn’t work that way!
The PCF says, “accelerating the world’s most promising research”. What has the research done over the last few years, and where is that research headed?
Prostate cancer research is one of the most promising areas of cancer research—in terms of results—for both patients and researchers. More progress has been made in the past two years than in the entire preceding decade. We’ve identified twenty-seven genotypes or varieties of prostate cancer—some are very aggressive and life-threatening while others are indolent or so slow growing that they are not life-threatening. We seen five new drugs approved for patients with advanced prostate cancer and we are making progress in developing better diagnostics so we can someday soon overtreat less and cure more.
You studied at the University of Southern California and are still living in LA. Do you ever travel outside of Cali? (Not sure why you would… it’s gorgeous there!)
LA is great, but my wife and I actually left LA in 1988 for Portland, Oregon. It’s one of the most beautiful areas of the country with a much gentler lifestyle. We’ve also lived in the Netherlands for several years which was a fabulous experience.
It looks like you grew a mustache for MOVEMBER. Did you shave? Someone told me that December was also a “no shave” month!
Actually, the blue moustache you saw on Facebook was the work of Photoshop. Following my radical prostatectomy, the post-surgical pathology showed that my cancer had metastasized to my lymph nodes. Since then I have had seven weeks of radiation treatment and I am currently in two to three years of androgen deprivation therapy (ADT). It cuts the production of testosterone which is a fuel for prostate cancer. It certainly makes for an interesting life: hot flashes, cold spells, night sweats, sleep problems, mood swings, laughing fits, muscle loss, extreme fatigue, etc. It’s why I call it a slow-drip chemo!
But it is doing what it is supposed to do. My testosterone level is way down and my PSA levels are imperceptible. But there are upsides: I don’t have to pay for a brazilian wax on my arms, legs and chest, and my male pattern baldness has reversed. (You see, testosterone creates a bi-product called di-hydrotestosterone which causes baldness!) When my surgeon first brought up ADT I remember asking if I would grow more hair on my head…
PCF raised over $14 million to support cancer research this year. That is impressive. How will those funds be spent?
Actually, PCF will have raised approximately $40 million to support research this year. Since 1993, we have raised more than $475 million. MOVEMBER raised $14 million in the US this year. We will split the proceeds from MOVEMBER with Livestrong in the U.S.
All proceeds that come to PCF are deployed rapidly to support game-changing research. We do not operate with an endowment. It’s cash in, cash out to support the research enterprise. It’s why we have been able to accelerate discovery in prostate cancer research. We also require our funded-researchers to share their data at our annual scientific retreat (a heretical idea when we were founded in 1993).
You can read about all of our research programs at www.pcf.org.
What are some of the symptoms of prostate cancer?
Unfortunately, prostate cancer is often a symptomatic, meaning that patients do not experience symptoms before they are diagnosed. The most common symptoms include pain in the lower back and hips, frequent urination, and interrupted urine flow. These could be dismissed easily by the average man. Other symptoms that are more likely to prompt a man to see his doctor are painful urination and blood in either his urine or semen.
Is there a way to check for that?
For years, the best first step in spotting a potential cancer has been the PSA test and the DRE (digital rectal exam). Men should speak with their physicians about a proactive plan that is right for them based on their physical shape and medical history when they reach 40.
But it must be clear, the PSA test is not a cancer test. It is the first diagnostic step in determining if there are any potential problems, including infection or enlargement, in the prostate. Prior to PSA testing, the majority of men who were diagnosed with prostate cancer were already had metastatic disease. Today, the reverse is true. What’s more, the death rate is now 40 percent lower than what was once projected.
A lot of diseases of there have cures… are we close with prostate cancer?
We are closer than ever to making prostate cancer a chronic or manageable disease rather than a life-threatening one. We are also closer to discerning which of the twenty-seven varieties need to be treated aggressively, which require moderate intervention and those which do not require immediate treatment and are suitable for active surveillance. This will enable us to prescribe personalized treatments and overtreat less while curing more. Ultimately, our goal is to find cures for the aggressive varieties.
With the progress we have achieved, many men are now living longer, more productive lives.
I don’t know many people affected by this… is it wide spread?
More than 16 million men worldwide are affected by prostate cancer. For 2010 in the U.S., 244,000 new cases were projected and 33,000 men were projected to die from this disease. In incidence and mortality, prostate cancer is to men what breast cancer is to women.
Who started the PCF?
PCF was founded by our chairman, Mike Milken shortly after he was diagnosed with advanced disease and told to get his affairs in order. He quickly discovered that prostate cancer research was virtually non-existent at that time. Thus, PCF’s model of venture philanthropy was born to support high-risk, high-patient-benefit research—the type many government programs do not sponsor. PCF’s involvement and model has helped build a global PCa research enterprise, built human capital to support research and enabled many—if not most—of the advances we have seen to date.
You haven’t always been at PCF. What did you do before?
I have worked on both the agency and corporate side of public relations and marketing communications for a wide spectrum of industries, both here and abroad. For the past eighteen years, my work has focused on life sciences and healthcare.
You work in and around communications… and I ask this all the time to the bands that I interview. How has the Internet changed the way that you do business? Has it changed the way you communicate on a daily basis?
Above all, the Internet and social media provide a wealth of opportunities for getting an organization’s message out to very specific, highly-engaged audiences. Blogs, user communities, Facebook and Twitter are very effective ways to communicate with targeted audience. It makes it easier to rise above the clutter. Of course, all of these venues require a high level of content generation. It’s a constant challenge to maintain a steady stream of high-quality, timely information. It has set a new standard. There is also a lot of poor information on the Internet. Those who can provide the quality information consumers are seeking, can set themselves apart from the rest.
It’s not easy getting published… but you have been published several times. Tell me about some of the things you have had published.
It’s as difficult as many think, especially in this time of reduced budgets and editorial staffs. If you have some of value to share, the expertise to back it up, and knowledge of where to pitch the idea, it’s achievable. My two recent favorite were Where’s the Prostate? (something many do not know, much less understand what it does) and Ladies, Check Your Prostates (women still make 85% of the healthcare decisions in households while men tend to neglect their regular checkups). In my previous life, I published several articles on nanotechnology.
What exactly is nanotechnology?
That’s a whole other discussion we could spend hours on. It’s fascinating. Prior to ten years ago, we were working largely in the micro level. New technology has enable us to see and work on the nanoscale. Thus, we can increase storage capacity on disks—storing more data in less space and we can produce faster, more powerful computer chips and processors. In life science, we can now study cells on the molecular level and develop new nano-formulations of pharmaceuticals with new capabilities. From better paint jobs on our cars, to our iPhones, self-cleaning surfaces and lighter, more durable materials, we are surrounded by nano-enabled products and advances.
In my past job, I saw gold atoms dance on the edge of their surface. Those poor guys—trying to find their bonds and equilibrium just don’t get a rest. I’ll stop there.
You are the main point of contact for all media inquiries at the PCF. Do you get a lot of requests? What’s the weirdest request you have ever had?
We and many of our partner researchers serve as leading sources of information on prostate cancer, so we naturally get a good number of media calls on a routine basis. These are generally straight forward.
The oddest requests we get are from concerned patients who do not have access to good information. I once received a letter from a woman whose partner had prostate cancer. She was worried that she might get prostate cancer through oral sex. When it comes to health matters, no question is too weird or off the table. We provided her with a simple and direct answer. No.
Were there any major milestones in 2011?
Please see our just-published Progress Report at www.pcf.org/ourstories for more information on that.
Let’s say I have prostate cancer… what’s next? What are my treatment options?
First, don’t panic. Don’t put any carts before the proverbial horse. Remember early detection and treatment provides a five-year survival rate of nearly 97%. Also key to remember is that there are twenty-seven varieties to deal with. Do your research and become your own advocate so you can make informed decisions with your physicians. No one sized treatment fits all. Discuss your test data with your physicians to determine the perceived aggressiveness and, based on your personal health and age, make the decision that is right for you. Remember, you are also entitled to second opinions. They can often provide valued clarity in the decision-making process.
Also, be sure to take your partner or a trusted family member or friend to your consultations. They can help make sure you have “heard” everything and that all of your questions are answered to your satisfaction. www.pcf.org also provides valuable information for newly diagnosed patients and their families.
It looks like you guys have embraced social media. Do you have a team of people dedicated to those efforts, or is that just delegated to others in the office?
We have a team of two working together on social media. My cancer blog, www.mynewyorkminute.org, is all mine. I never know what I am going to write but I always find inspiration. I tell fellow patients and their caretakers that the content is there for them to pick and choose. The most important function of the blog is to remind all of us that we are not alone on this journey.
Oddly, I started thinking about initiating the blog while my urologist was giving me my diagnosis. Half of me was listening to him. The other voice in my head was saying, “You’re the communicator… you’ve spent the past two years telling men they need to make prostate cancer something to talk about… this is no coincidence… you need to be very public about this…” It felt like a moral imperative.
Two days later, totally unprompted, my wife turned to me and said… you know, being in your position, I believe you need to talk about this… you need to start a blog and talk about your “New York Minute”. There it was—agreement AND a name for the blog. No wonder we’ve been married almost twenty-seven years.
Breast cancer has pink… prostate cancer has blue. Is there any reason behind the colors? (Maybe a girl/boy thing?)
It’s been that way from the start, but I belive that is the thinking…
You have written a few blogs about your journey. I bet that takes a lot of courage to write about what happened.
Courage? Not really, once one gets past the whole macho thing. Passion is what’s required. As I said, it seemed like a moral imperative. My job, for which I long had a passion, now seems like an avocation. I often look back over my shoulder thinking I’ll find the boney finger that brought me back to LA… this position… and this journey.
What is MyBridge4Life?
It is an online forum where patients and caregivers can share their stories and provide support for each other.
Your diagnosis isn’t simple… can you walk me through that? When did you find out? What was that process like going from a healthy young man to having cancer?
I was diagnosed at age 51. I was surprised, but not shocked. Working at PCF, I knew the statistics. I understood that 1 out of 6 American man falls into those stats and and a diagnosis. I like to say my Pachinko ball simply fell into the cancer slot.
How do you stay so positive?
What else can you do? I draw great strength from my loving wife, family and friends and the many inspirational patients I have meet along the way. I’ll be honest—prompted by my reality and hormone treatment, I still have my down moments and can shed my share of tears. It’s important to allow one’s self to do that. You need to let it out. But I know I am not alone. There are many cancer patients who are doing better than me, and there are many who are in worse positions. We need to realize this is life and life has its challenges.
The journey isn’t over… what’s next for you? What does 2012 look like?
I look forward to just two more quarterly injections of Lupron and hopefully seeing the side effects start to wane in the fall. I’m told that it could take up to a full year to feel like my old self again. Just knowing I am close is comforting.
Of course… that means I enter my “wait and see” period. I’ll be giving up my active fight to see if my cancer recurs and if additional ADT treatment will work, or if I will become resistant to it and need to move onto chemo and other treatments. It’s all part of the journey. If I am fortunate, in four years I will hear my oncologist say, “You are cancer-free.”
Dan, this was a long time coming. I am glad that we finally got the chance to sit down and do this. I could ask you questions all day! In all of the interviews that I do, I always give the artist the last word. Go.
Come on guys, for you and your loved ones, take care of your health. Make prostate cancer something to talk about and, once you reach 40, talk to your physician about your prostate health. Life is good. Don’t waste it!