Dan Zenka, senior vice president of the Prostate Cancer Foundation was diagnosed with prostate cancer in April 2012 at the age of 51. He blogs to share information and patient perspectives and most importantly, to encourage men to talk about prostate cancer, reads his profile on his very popular blog, MyNewYorkMinute.
Dan was gracious enough to share his prostate cancer experience with us. Here he talks about prostate cancer, PSA test and the PCF.
Hope you enjoy the interview.
Me: In the initial stages of diagnosis, I understand that you opted for surgery even though your needle biopsy results indicated an early stage of cancer. What prompted you to make the choice and not opt for proactive surveillance?
Dan: Actually, mine was not an early-stage cancer. Having annual PSA tests with my regular physical exams since I was 40, my PSA rose steadily but slowly from a baseline of around 1.8 over many years. Finally, my PSA rose from 3.1 to 5.8 in just one year—a near doubling. The needle biopsy revealed cancer in at least 50% of the gland. Five of the six core samples containing cancer were 65-95% cancerous. My Gleason score was 7 (4+3) more aggressive than a 3+4. Working where I do, I knew we were dealing with a more aggressive variety even before my urologist uttered the words.
When my urologist started dutifully penciling out the treatment options on a legal pad, I asked to stop. I told him where I worked and that I clearly understood the data. I then asked him to bring his surgeon into the exam room.
If my Gleason score was 6 and there was less invasion of the cancer, I would have definitely opted to undergo active surveillance. It’s a terrific option for many patients with low-grade cancer and can prevent unnecessary overtreatment and side effects. With 27 currently identified varieties (genotypes) of prostate cancer, it is true: some men will live long lives with a very slow growing variety, dying with it and not as a result of it; others with cancer in the middle range of aggressiveness may require less aggressive forms of treatment; men with prostate cancer that presents as being more aggressive require more aggressive treatments such as removal of the gland. This is called a prostatectomy.
Me: How relevant is PSA testing to prostate cancer diagnosis based on your personal experience?
Dan: In my case, I clearly believe that PSA testing saved my life and may continue to save it. One week after surgery, I was told that my cancer had spread to my lymph nodes where single Gleason 5 cancer cells (most aggressive) were identified. I was now a Stage IV prostate cancer patient. I subsequently underwent two years of androgen deprivation therapy (blocking the production of testosterone that fuels the growth and progression of prostate cancer) and seven weeks of radiation therapy. Quarterly PSA testing is now used to measure my response to treatment and to determine if my cancer recurs.
Me: What is your opinion on USPSTF’s banning of PSA testing as routine screening for prostate cancer?
Dan: Until we have a better, cancer-specific biomarker for this disease, the PSA test remains an important tool in the diagnostic process. More education is needed for both PSA testing and active surveillance so patients can make better informed decisions.
In my personal opinion, the USPSTF’s recommendation against—not banning—routine PSA testing throws the baby out with the bathwater. I believe their intent was to prevent overtreatment, which is indeed a problem in prostate and some other cancers. However, patients have a right to learn if they have cancer, using the best tools that are available for the process and to make informed decisions regarding testing, based on the known pros and cons, and, if diagnosed, treatment options, based on the identified aggressiveness of their cancer. Too many patients do not fully understand how and why the PSA test is used.
Again, in my opinion, the USPTF would have better served men by calling for better education programs for both patients and clinicians, clarifying the pros and cons of PSA testing and underscoring the potential benefits of active surveillance for men diagnosed with low-grade (Gleason 6) prostate cancer as a means of avoiding overtreatment. For men with low-grade disease, we need to take the scary BIG “C” out of prostate cancer. I can’t over emphasize how important information is for patients.
Me: You have been on androgen deprivation therapy for two years. How difficult was it in terms of change in quality of life?
Dan: Through my blog and my work, I have probably met hundreds of men who have undergone ADT. For some, it’s a walk in the park with few bothersome side effects. Others experience the full spectrum of side effects including mood swings, fatigue, muscle and possible bone loss, short-term memory loss, hot flashes and more. My experience put me somewhat in the latter group. Yes, it wasn’t easy for me and it can definitely affects one’s quality of life. But you need to stay focused on the big picture and end goal: keeping your cancer at bay.
Me: What is your message for newly diagnosed prostate cancer patients?
Dan: There is no better time for patients than today. More progress has been made in prostate cancer in the past three years than in the preceding decade. Accelerated discovery has delivered five new FDA-approved drugs to patients in the past 33 months. Seven more are in Phase III trials and more than 90 are in early Phase I/II trials. As a patient with advanced disease, I am comforted to know that if my disease recurs, the next best new treatment is waiting. And, if that treatment fails, there is another in line. We are making many forms of this disease highly manageable and rapidly moving closer to a day when we can over-treat less and cure more with precision medicine.
Me: Surgery has been found to be a cost effective treatment option when compared to radiation and chemotherapy in a recent study by the UCSF. Comment.
Dan: Cost aside, it is important to remember that each man’s case is unique. Patients need to look at the severity of their disease and discuss the benefit and risk of each treatment option that may be an option for them. This is a complex disease. No one size treatment fits all.
Me: What is PCF planning for 2013?
Dan: In 20 years, PCF has built a global research enterprise that has drastically changed the landscape of prostate cancer. Today, with new science supported by PCF and its donors, physicians in the clinic are making better treatment decisions for every man who is currently undergoing treatment for prostate cancer—from early-stage prostate cancer to advanced disease. PCF will continue to focus on projects that have the potential to deliver better biomarkers so physicians can better assess patients’ disease and research that can deliver new, life-saving drugs to patients. It also continues to support the Prostate Cancer Clinical Trials Consortium—a global network of 13 leading cancer centers—to help patients receive new treatments that might benefit them and move new drugs to the clinic more rapidly.
Thank you, Dan. It was a pleasure to connect with you.
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