By Lonnie Silva
As I approached my mid-50s, I enjoyed reading well respected American publications. As an avid reader, I was never one for subscribing to rag sheets or the infamous tabloids. One subject on my reading list was prostate cancer. Through my research, I discovered a new blood test called prostate specific antigen, otherwise known as PSA. I asked my primary physician about the PSA test, but was told I didn’t need one. Unfortunately, I waited a few more years and asked again, but was handed the same confusing reply of “NO”. By this time I was approaching retirement, in fact I was retired…so I asked again and again, but heard the same “NO” and the same story. As I look back now, it still makes me angry sometimes, but I choose to pay it forward and advocate for other men.
When I was 65, I looked up the some symptoms I was having and shared them with my primary physician. Finally, he ordered a PSA test, after a decade of “NO’s”. Unfortunately for me my first PSA came back as 22.1, a number that brought great concern. Any time a doctor calls you at 9 o’clock on a Sunday morning you know you have reason to be worried. My next procedure was a prostate biopsy, and to no surprise, it was positive for cancer. My Gleason Score came back at seven, which is not exactly good news. This was back in 1998 when Gleason Scores ranged from 1 to 10, so at that time, seven was a high score. , Fortunately my digital rectal exam came back negative and the doctor could feel nothing so my Clinical Staging was T1c, which is not too bad.
My wife and I had an appointment with a urologist, and this is one thing I will never forget as he walked into the room shouting, “Yes, you have prostate cancer and will cut it out and throw it in the bucket”. Pardon my honesty here, but I think I’ve earned it…My first reaction was, “How about if I cut out your brain and throw that in the bucket”, as I walked out of the office and refused to have anything to do with him again. Also I had asked him about a second opinion, and he informed me that I would have to pay for it. This was not correct as California law states a patient has a right to a second opinion. We left the urology office and I came home to start my research on prostate cancer. Immediately, I went on line with an old dial-up connection that began with researching the National Cancer Institute, Sloan-Kettering, and Mayo Clinic, and to my surprise I had all kinds of information, plus additional websites to review. I learned that in my own backyard I had the University of California at San Francisco and Stanford University, two very well respected institutions to seek out for help.
Immediately, I made appointments with a urologist, a medical oncologist, and a radiation oncologist, as I wanted to obtain as many opinions as I could get. The avid reader (me) had evolved into an avid researcher – and a good one at that. I ran across one treatment called brachytherapy, which was relatively new at the time. I asked my health provider for an appointment to get their opinion. Once again, I was told no, which is a word I grew to dislike. I immediately contacted the California State Board of Managed Care to file a complaint. I must say they were most helpful, and I quickly received an appointment for brachytherapy. Unfortunately I was too far advanced for brachytherapy at that time which I was very sorry to hear.
By this time, I was thoroughly disgusted with my urologist and formed an opinion that most urologists should not be handling prostate cancer. Again, pardon my honesty, but you can see how I developed that viewpoint. I made an appointment with a medical oncologist and finally was receiving some information more to my liking. I waited for a total of eight months to make a decision because I didn’t like the choices in 1998 such as open surgery or 3-D conformal radiation. Also, I asked the radiologist about the combination of brachytherapy 3-D conformal radiation, and I was informed that I would still have to go through 30 sessions of 3-D conformal and brachytherapy. Once again, I didn’t like the answer, and continued to follow my instincts which had served me well so far.
I finally came to the conclusion (reluctantly) that open surgery was the best choice I had, but I chose my surgeon (urologist) carefully. Within 14 months of surgery, however my PSA had start rising, and at the time it would double every 90 days, which was again very alarming to me. Again I was advised that radiation therapy was the answer for a salvage treatment, and once again my instincts led me in a different direction. After consulting a medical oncologist again I went on intermittent hormone therapy. I was not fond of the hormone therapy, but I did look forward to the chance to come off the injections, and take a break. In 2001 there was a new form of treatment and using a vaccine that is an immunotherapy called Provenge. From everything I heard it was excellent, and with minimal side effects, but the FDA had not yet approved it. I had hoped that a hormone therapy would give me some breathing time until the FDA could give approval for Provenge. Unfortunately, it was nine more years before they approved it, and I had already been on intermittent hormone therapy twice. That was a lesson in how long it takes to get a drug approved, and the good news is that I am now off hormone therapy. I did choose salvage radiation with an expert in 2012, but the radiation choices and technology has improved greatly since 1998 when all I was offered was 3-D conformal radiation.
My long journey as a prostate cancer patient has included learning how to be my own researcher which helped me make the best treatment decisions, being proactive and an advocate for my own health, setting up and coordinating three prostate cancer support groups in Northern California, establishing a monthly newsletter on prostate cancer, sitting on panels and patient discussion boards as a representative for men with prostate cancer, staying abreast of the newest medical treatments for prostate cancer, attending as many prostate cancer conferences and workshops as I possibly could, mentoring other men who are facing the same prostate cancer battles I experienced, and advocate to men of all ages the importance of being proactive with their own health. Research and medical technologies for treating prostate cancer have come a long way since I was diagnosed in 1998, but the medical community has a while to go before prostate cancer is much more treatable with less-invasive techniques and no longer requiring surgery. It also has a long way to go in listening to a man when he wants to have his PSA tested, and be screened for prostate cancer. It is unacceptable to tell a man “NO” when he is asking for a PSA, and it is unacceptable that my first PSA was 22.1 – after a decade of asking. However, I will continue my research and will continue to mentor other men to remain proactive with their own health and with prostate cancer. Remember, LEARN and LIVE.
You can visit our prostate cancer support group in Hayward, CA on the 2nd Tuesday of every month at 6:30 pm – at St. Rose Hospital 27200 Calaroga Ave. If I can help advocate for you, contact me at firstname.lastname@example.org, or (510) 783-5121. You can also contact Josie E Nolasco phone number is (510) 264-4044.