My trek
It’s been 8 years since diagnosis and treatment. PSA continues to be undetectable. I’ll just share how I found out, what I did about it, and what transpired since.
My PCP raised the question after a suspicious digital rectal exam. I was 65. My PSA was 4.4. I went to urology and saw a PA. She said I needed testing and offered an MRI or, not and, a biopsy. I asked what the difference was and she said that the biopsy was more definitive. OK, then a biopsy it is. There was a cancellation so I had one 90 minutes later. It was performed by a urologist. I was told that they would call with results in 3-5 days.
2 weeks went by and I hadn’t heard anything so I started calling. Repeated calls went unreturned. I finally gave up and went on the portal, pulled up my pathology report and then used Dr. Google to explain that I had cancer and what Gleason score meant. I was 4+3. I called my PCP and explained the lack of communication and was told they’d call and someone would contact me that day. Several more days went by. My spouse, who can be pretty aggressive, called, got through, and was told they’d call could give me an appointment, 3-4 weeks out. No, she demanded one that week. OK, Friday at noon.
I went to the appointment and met the urologist who did the biopsy. She apologized and said that the results had gone back to the PA who had written the order and had no idea why I wasn’t contacted. She was in a hurry and said that I had cancer, intermediate aggressive, I needed treatment, and handed me a book to read, telling me it would explain my options and to call when I made a treatment decision.
That was it.
I read the book and it talked about surgery, radiation, etc. I had two friends, both doctors who had been through this and both recommended surgery and had done that themselves. OK, surgery it is but where to have it done. I have ZERO confidence in the local clinic even though my spouse had gone through breast cancer with surgery and chemo a couple years prior and had received excellent care. I had not gone online and read anything, no forums, etc. but I did search for where a good place for surgery might be. I decided on Cleveland Clinic, 5 states away. I saw my urologist and she even concurred, telling me that’s where she did her internship and residency and gave me the name of a doctor.
Long story short at this point, flew to Cleveland for consultation, liked what I heard, flew back a few weeks later for RALP. Spent a week in a nearby hotel, cleared to fly after catheter removal, flew back home. Recovery went well. Incontinence a problem.
My local urologist took over the post-surgical treatment. She recommended Kegels, of course, which I’d been doing to no avail, and I asked about PT. There was no pelvic floor specialist closer than 500 miles so I saw one that deals with child bed wetters or geriatric patients. I think what she had me do made tings worse.
At the one year mark I had an artificial urinary sphincter installed. It lasted for 4 years before I had it replaced. That was 2 years ago. 4 years ago, I was traveling through Italy when an inguinal hernia emerged. I’d read that they are a possibility after RALP. I had it fixed and 1 year and 4 days later it came back, not quite as big. I bought a support and wear that when I workout, stand for extended periods, etc. I do not intend to go through surgery for it again.
So, I am happy to be cancer free but not that happy with the overall care I have received locally. This has led us to considering relocating to somewhere with better choices in healthcare at some point.