Prostate cancer patient’s first thought: 'This has to be a mistake'
September 21, 2015 | by Nils Lindstrom
Glendora resident Nils Lindstrom teaches typography at Art Center College of Design in Pasadena, California. The father and grandfather is also a City of Hope patient at our community practice site in Glendora. Here, Lindstrom shares his experience being diagnosed with, and treated for, prostate cancer.
I was 60 years old. It had been three years since I had seen my primary care physician, but I had a clogged eye duct on my eyelid that was getting large enough to impair my vision and scare the grandchildren.
“Dad, you need to get that looked at,” my kids were nagging me. So I made the appointment, did the routine blood test, got my referral for a dermatologist and left confident that everything was fine. How could it not be? I was running two miles twice a week and going to the gym regularly. I felt great – no aches, no pains.
“Honey,” I said to my wife Loraine of 35 years, “we’ve got 30 more good years.” I was coasting.
The 'has-to-be-a-mistake' diagnosis
I remember precisely where I was when I got the phone call from my primary care physician’s office. I was driving north on the 605 Freeway at the Arrow Highway exit. The physician's assistant told me that my PSA (prostate specific antigen) level was high, very high — 22 to be exact. She told me she was sending a referral to a urologist ASAP, and we hung up.
This has to be a mistake, I thought. Nobody in my family gets prostate cancer. As a devout Mormon, I’ve never smoked. I’ve never drunk alcohol or used recreational drugs. My diet was reasonably good. I exercised, and I felt fine. No. No. This has to be a false positive, I thought.
So I nose dived into Google (most of us do, you know) and read all about how unspecific the PSA test can be. The Internet was flush with stories of men with elevated PSAs who had no cancer at all. But compared to them, my PSA level was in the stratosphere. Still, I pushed it out of my mind, convincing myself that this would all go away.
My first visit to City of Hope surgeon Jonathan Yamzon, M.D., assistant clinical professor in the Division of Urology and Urologic Oncology, confirmed a firm spot on the left lobe of my prostate. I was numbed by this news. Dr. Yamzon scheduled a biopsy and explained the procedure to me. I had already read about prostate biopsies on Google, but listening to Dr. Yamzon explain it was much more calming.
He was young, current and personable. He didn’t sugarcoat anything, but assured me that the biopsy would be relatively painless. He also scheduled an MRI and two CT scans to take place before the biopsy.
So I said goodbye to “denial” and welcomed “anger and suspicion” into my life. This was the perfect medical conspiracy, I thought. You pick a disease that often has no symptoms. You make backroom deals with labs and radiologists and fake the whole thing. I remember anticipating my MRI and wondering how I could be sure those images would really be mine and not those of another diseased patient that corrupt technicians would use over and over to make people think they're sick.
I even entertained secretly gluing a penny to my backside during the scan and, if it showed up on the MRI, I would know for sure. Yeah, I was nuts. I didn’t need to try that trick. When I viewed my MRI, my right hip was slightly higher than my left. I knew right away it was really me. There were too many moving parts and people involved to keep a conspiracy like that going.
But on my own, I took a second PSA test.
Eliminating any doubt
Just before the biopsy, Dr. Yamzon reviewed my MRI with me, which confirmed a category 5 tumor in the entire left lobe of my prostate. Also, my second PSA score was in. The level had gone up 4 more points in less than two months. I was now at 26. The CT scans were clear, but this was looking pretty grim.
With that news, I submitted to the biopsy. Dr. Yamzon did his very best to make me as comfortable as possible. He was good-humored and talked me through the whole procedure. It wasn’t painful, just very uncomfortable. The biopsy results came a week later, and they weren't good. All 12 cores were positive for cancer, ranging from 30 to 90 percent. My Gleason scores were all 8s and one 9. My entire prostate was full of cancer, yet I felt fine! I remember sitting with my wife and staring at the biopsy papers.
So I said goodbye to "anger and suspicion" and welcomed “pity and anxiety.” How could this be happening? What if I die? And if I don't die, what will happen to my quality of life after treatments? How will this affect my relationship with my wife?
It was emotionally traumatic. I had nightmares. Waves of sadness would wash over me, and I would bury my head in my wife’s shoulder and just weep. To her credit, she was a rock. She never got anxious or stressed. She intuitively knew I was going to be OK and told me so. Sometimes just her touch was all I needed to pull me out of the anxiety.
Biopsy, surgery and beyond
A robotic-assisted laparoscopy surgery was scheduled with Dr. Yamzon’s colleague, Ali Zhumkhawala, M.D., assistant clinical professor in the Division of Urology and Urologic Oncology at City of Hope. The biggest obstacle to treatment by Dr. Zhumkhawala was learning to pronounce the name: “Zoom – Koala.”
Dr. Zoom, as his colleagues call him, is a young, energetic and optimistic family man. He’s smart, good-humored and technically current. I think we connected very quickly. I think the best way a doctor can help his patient is to be accessible. This is difficult for urologists these days. The baby boom generation has “hit the fan” so to speak. So many men need help, it must be overwhelming for these doctors. Dr. Zhumkhawala made himself accessible through email. He answered my questions and concerns in a timely manner. I trusted that he had my best interests in mind and he trusted my suggestions.
He was young but was already a trainer in the robot-assisted surgery techniques at City of Hope. I realized that the new generations of surgeons today are products of the video game generation. They are perfectly comfortable working from control panels and viewing a monitor.
Dr. Zhumkhawala took over for Dr. Yamzon seamlessly. My family, faith community and professional colleagues rallied around me. By the day of surgery, I was emotionally ready for the life change that was about to happen.
Lindstrom is now concluding successful treatment at City of Hope.
Learn more about becoming a patient or getting a second opinion at City of Hope by visiting our website or by calling 800-826-HOPE (4673). You may also request a new patient appointment online. City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.