“I’ve been living with advanced prostate cancer for almost 20 years": One man shares his treatment journey
Have you been putting off getting your prostate checked? Men’s Health Month is the perfect time to tackle this important medical to-do. Just ask Ron Scolamiero, who was surprised by a prostate cancer diagnosis at 54. He shares his story of resilience.
There is no way to prepare for the moment a doctor looks you straight in the eyes and tells you, “You probably have five years to live.” Or the next moment, when he slams his fists on his desk demonstratively and says, “You need surgery immediately.”
I know this because it happened to me, 18 years ago, after a biopsy of my prostate turned out to be positive for cancer.
I was 54 years old, and seemingly healthy as could be. I was running two successful businesses, playing tennis three times a week, and boating and fishing in my spare time. Life was great.
But when I applied for a life insurance policy—and was denied because of a high PSA (prostate-specific antigen) level in my blood, a possible indicator of prostate cancer—everything changed. I went to see the urologist, had a biopsy and found out I had moderately aggressive prostate cancer. Back then, hearing the “C” word—cancer—was like getting a death sentence. I went numb.
In the weeks that followed my diagnosis, I remained numb. I remember driving home from work a few times and completely missing my exit—I was so deep in worry and anxiety.
I was also shrouded in shame.
One of the first things I did after my diagnosis was write to the National Institutes of Health, the Prostate Cancer Foundation and the American Cancer Society. Back in 2000, the internet wasn’t what it is now, and I wanted as much info as I could possibly get my hands on in order to educate myself about this disease and my treatment options. Yet I was so intent on keeping my diagnosis as private as possible that I actually rented a post office box two towns away and had all of the info I was requesting sent there.
Riding the PSA roller coaster
Once I’d read up on my options, I decided to hunt down the best doctors I could find. I’m lucky in that I live just south of Boston, where there are major medical centers. I made appointment after appointment to get as many opinions as possible, before I landed on a Harvard Medical School-trained doctor who recommended hormone therapy, coupled with external beam radiation—a combo plan that would reduce the size of the cancer to make it an easier target for the radiation.
On December 1, 2000, I started the hormone treatment; between December 1, 2000, and January 31, 2001, they did the radiation.
Immediately after this treatment, things were looking good. My PSA levels dropped, which is what we wanted. When the prostate produces more PSA, it may indicate a problem, such as the potential development or growth of cancer—so low is better. In fact, my numbers stayed lower for the next five years.
Then my PSA levels started to rise. The docs just wanted to keep an eye on it for a while. They were concerned, but not overly so. After a few months of this watchful waiting, my team—a radiation oncologist, urologist and medical oncologist—told me I needed surgery to remove my prostate. And once again, I sat across from a urologist as he looked me straight in the eyes and said, “I can’t give you a cure, but I can give you a treatment.”
I was left with no choice but to do what docs call watchful waiting and what I call anxiety-provoking waiting. My PSA was constantly rising, yet my cancer wasn’t metastasizing and there was no evidence of a tumor.
I had what they call a salvage radical prostatectomy, which is, generally, a complex surgery where they remove the prostate, adjoining seminal vesicles and surrounding lymph nodes. For a year after that surgery, there was no PSA detected in my blood—which is what’s supposed to happen once your prostate gland is gone.
But, yet again, there was evidence of my PSA rising. My urologist told me he thought the disease had progressed—and my oncologist told me there was no drug available for someone in my situation. My cancer hadn’t reached the point of metastasizing, or spreading, to other organs, but it also wasn’t gone completely.
I was left with no choice but to do what docs call watchful waiting and what I call anxiety-provoking waiting. It’s like waiting for a nuclear bomb to go off. My PSA was constantly rising, yet I was having bone and CT scans every 90 days, and my cancer wasn’t metastasizing and there was no evidence of a tumor.
Reclaiming my life—and helping others do the same
This went on until 2012, when my oncologist said he was part of a clinical trial for prostate cancer patients like me living with non-metastatic castration-resistant prostate cancer. I was lucky in that my doctor was the lead physician on the second phase of this trial. After I began the treatment, my PSA levels held steady, and there was no evidence of the cancer spreading.
Since then, I’ve had two tumors appear where my prostate used to be—and surgeries to remove them, which have resulted in a whole lot of difficulty with my ability to urinate—but no tumors have spread throughout my body. I have continued taking the drug, and I felt incredibly grateful when it was approved by the FDA.
I’m 73 now, a father of five sons and grandfather of three. Most days I don’t even think I have cancer, even though I still take my pills every morning. Thanks in large part to my wife, Laurie, I have managed to live my life as if I didn’t have this disease. And even though it is always lurking in the back of our minds, we don’t let it get to the forefront to take over our lives.
What is at the forefront for me is doing whatever I can to help other men facing a prostate cancer diagnosis. I’ve come a long way since those early days of shame, traveling two towns over to get my prostate cancer mailings.
In fact, I recently filmed a video for the American Association for Cancer Research, and I’m going to be featured on My Prostate Cancer Roadmap, a website for patients and caregivers that explores the complexities of diagnosing, treating and living with prostate cancer.
I’m anything but a hero. I’m simply a patient who had the great fortune of finding doctors who’ve taken care of me, and having a wife and family who’ve helped me keep a positive attitude through it all.
And my hope is that, by sharing my story, I can help other men realize it’s OK to talk about their diagnosis of prostate cancer, and ask for help when trying to figure out their way forward.