THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2019 SO THERE IS NO UPDATE.

At my routine, annual biometric exam, the GP said that things had changed. For the last five years, he told me that statistically, there is no benefit to having a prostate exam or analysis. But do I want a PSA test now? Do I want to know the results?

I thought he was asking if I wanted a digital rectal exam. That's why I said, "No" for the last five years. He explained it was a blood test. Well, of course I wanted that test. They were drawing blood anyway, for my cholesterol numbers. Let's do it!

The next business day, he called me saying he had bad news. My PSA was 28, and that was high. He said I needed to see a urologist. Later his office called again with an appointment scheduled for me in a few days. The urologist said that there was a few white blood cells in my urine. Maybe there was a urinary tract infection or something else. The DRE seemed normal. A small prostate that felt normal. In a couple days, I was called and told my PSA measured 41. I didn't ask how bad that was, but to go up from 28 to 41 in one week? I wondered what was going on there.

I did some reading, and concluded that 41 was quite bad, and I was certain I must have prostate cancer. I freaked out a bit.

A few days later, I had my biopsy. They didn't tell me it would be very painful. On a pain scale of 10, where passing kidney stones without pain meds is 10, I would call the initial shot in the prostate to anesthetize it a solid 7. The antibiotic shot in my butt cheek a half hour earlier was a 4 due to the burning sensation. The 12 biopsies themselves were more like a 2 on the pain scale. All in all, an unpleasant experience. I asked for a picture from the ultrasound, and got one snapshot. There were a couple dark areas on the prostate that made me wonder if it were cancer areas.

Today is Tuesday. Last Friday, the urologist in our consultation appointment (his consultations are always on Friday, it seems), explained that I had prostate cancer in 8 of 12 biopsies. I needed to have a CT and bone scan. Then we can see what potential there is for cure.

He gave me a copy of the two-page pathology report.

11/8/17
Clinical History
Elevated PSA of 41.55 ng/mL.

Final Diagnosis:

Part A, Prostate (Biopsy), Right apex:
BENIGN PROSTATE TISSUE.
Sections demonstrate needle biopsy core(s) of prostate tissue comprised of benign prostate glands and stroma. There is no evidence of a high grade prostatic intraepthelial neoplasia or infiltrating carcinoma.

Part B, Prostate (Biopsy), Right mid:
PROSTATIC ADENOCARCINOMA, GLEASON GRADE 4+3=7 (EPSTEIN GRADE GROUP 3).
TUMOR INVOLVES TWO PARTIALLY FRAGMENTED CORES (APPROXIMATELY 40% OF TISSUE OVERALL).
PERINEURAL INVASION IS PRESENT.
Sections demonstrate needle biopsy core(s) of prostate tissue comprised partially of benign prostate glands and stroma. Involving two partially fragmented cores, there are infiltrating small atypical glands lined by cell having enlarged hyperchromatic nuclei with focally prominent nucleoli. The tumor is largely poorly formed and cribriforming. Perineural invasion is present.

Part C, Prostate (Biopsy), Right base:
PROSTATE TISSUE WITH SMALL FOCUS OF ATYPICAL GLANDS.
Sections demonstrate needle biopsy core(s) of prostate tissue. Focally, there is one core with atypical glands lined by cells having enlarged hyperchromatic nuclei with focally prominent nucleoli.

Part D, Prostate (Biopsy), Left apex:
PROSTATIC ADENOCARCINOMA, GLEASON GRADE 3+3=6 (EPSTEIN GRADE GROUP 1).
TUMOR INVOLVES ONE CORE (5%).
PERINEURAL INVASION IN NOT IDENTIFIED.
Sections demonstrate needle biopsy core(s) of prostate tissue comprised largely of benigh prostate glands and stroma. Focally involving one core, there are infiltrating small atypical glands lined by cells having enlarged hyperchromatic nuclei with focally prominent nucleoli. Perineural invasion is not identified.

Part E, Prostate (Biopsy), Left mid:
PROSTATIC ADENOCARCINOMA, GLEASON GRADE 4+3=7 (EPSTEIN GRADE GROUP 3).
TUMOR INVOLVES THREE PARTIALLY FRAGMENTED CORES (APPROXIMATELY 60% OF TISSUE OVERALL).
PERINEURAL INVASION IS NOT IDENTIFIED.
Sections demonstrate needle biopsy core(s) of prostate tissue comprised partially of benign prostate glands and stroma. Involving three partially fragmented cores, there are infiltrating small atypical glands lined by cells having enlarged hyperchromatic nuclei with focally prominent nucleoli. A majority of the tumor is poorly formed and/or cribriforming. Perineural invasion is not identified.

Part F, Prostate (Biopsy), Left base:
PROSTATIC ADENOCARCINOMA, GLEASON GRADE 4+3=7 (EPSTEIN GRADE GROUP 3).
TUMOR INVOLVES TWO CORES (90%, 70%).
PERINEURAL INVASION IS PRESENT.
Sections demonstrate needle biopsy core(s) of prostate tissue comprised partially of benign prostate glands and stroma. Involving two cores, there are infiltrating small atypical glands lined by cells having enlarged hyperchromatic nuclei with focally prominent nucleoli. A majority of the tumor is poorly formed and cribriforming. Perineural invasion is present.

The Doctor gave me a book to read. From that and reading on the internet to try to understand the biopsy results, it appears likely that the cancer is not fully contained in the prostate capsule. And since there is perineural invasion in both left and right side, I assume that if a prostatectomy is performed, then the nerves will go with it. Never a spontaneous erection again.

I just hope that a prostatectomy will get this cancer gone. They would take the seminal vesicles with it, so if the cancer went there, it too would be gone. And it may have spread to the lymph nodes. I don't know if they would analyze that during the operation to take them out, or if they would send samples to a lab for later review.

I hope the CT and the bone scan find no metastacies. I think a prostatectomy would likely be preferable to radiation or ADT.

I've been so unlucky, and need some good luck now.

I have a number of emotions. One of them is a little anger that the general practitioner doctor never told me in five years that a PSA test wasn't a digital rectal exam. I would have been tested five years ago, had I known. Also, the check list use, asking about health problems, includes one line asking if you have trouble urinating. For years, I have not checked that box. I urinate every day. Multiple times.

At least the questionnaire at the urologist's office asked some things more specifically. Apparently I did have some trouble urinating. When done, I needed to let it dribble intermittently for 10 or 15 seconds before zipping up, so that it wouldn't dribble into my pants. That was normal for several years. But turned out that it is not normal.

I can go urinate, and sometimes, need to go again in maybe 30 minutes. That is less that two hours. Not normal. Who would have thunk?

Maybe once a week, I get up in the middle of the night. A year or two ago, it used to be most nights I would get up once to go pee. Is it just an indication of drinking too much water before going to bed? Maybe not. I thought it was.

It's my fault for being ignorant. But the general practitioner who I saw every year should have communicated better. That was his job.

With a CT and bone scan both being done tomorrow, and consultation with the urologist on December 1, hopefully I can get some relatively good news, rather than it just continuing to be worse with every detail.

Wednesday, 11/22/17 (the day before Thanksgiving) I went to St. Luke's Hospital for the CT and bone scan. At about 8:45 AM they put an IV line in my arm and injected some radioactive stuff into my bloodstream. That was the first ever IV for me. Then they sent me down the hall where they did the CT. I asked if the machine made a lot of loud noise, and they explained that MRI is noisy like hammers, but not CT. The CT used X-rays.

There was no need to undress, other than to take off pants and shoes. They hooked up the IV in order to inject the "contrast" or something to make blood vessels stand out. They timed it so that the contrast would be in the right area when they did the CT scan. It was a warm sensation that went up my arm, and quickly worked it's way down to go between my legs. It didn't last very long, but it was a strange sensation. They were done with the CT scan, and I went home.

I returned to St. Luke's for my 12:00 appointment for the bone scan. The machine somewhat resembled the CT. They didn't need for me to undress at all for this. Rather than X-rays, the bone scan makes an image from the gamma rays coming from my bones, due to the radioactive stuff they injected this morning. It took maybe 20 minutes for the full body scan. Then they reoriented the machine, and imaged my ribcage and head from a different angle than the full body scan. Total time for this bone scan appointment was not much more than 30 minutes.

The radiologist will review the images to interpret them, then send the results to the urologist who ordered the tests. For me to get a copy, it has to come from the urologist. That appointment isn't until 12/1/17, since the urologist is out for Thanksgiving vacation. It seems that all his consultations are on Fridays. I am pretty happy about it being 12/1, since initially he wasn't going to have an opening in his calendar until 12/15.

I am hoping this will be operable. This urologist does do Da Vinci surgery. However, I do not know how many he has done, nor the record of his results. Whatever the result, I will want to also consult with a radiation treatment specialist. But how do you find a good specialist? How available will they be to review my case, and to propose a treatment plan? If the record of the urologist isn't strong enough, how do I find a better surgeon? And if the urologist recommends surgery, and the radiation specialist recommends EBRT or some such thing, how do I make a decision? I want the best chance of cure, and if that is not possible, then long term survival with side effects of treatment being a secondary consideration.

I know my case must be bad, because of the pathology report and the very high PSA. From what I have seen so far in reviewing other stories, it appears that radiation is the initial treatment used in most cases where PSA at diagnosis was over 20 something. Mine at 41 feels like a death sentence.

February 21, 2018 my urologist performed robotic laparoscopic prostatectomy on me. The greatest pain I felt in the hospital was as the anesthesia wore off, it felt like I had to urinate badly. Apparently, this was due to the foley catheter. This feeling subsided once they gave me some kind of antispasmodic. I was surprised at how little pain there was in this whole surgery. On a sale of 1 to 10, with passing kidney stones at 9.5, I rate the pain 1 to 2. It was the first surgery of my life, and I was expecting to be in agony for days following surgery.

Before being bounced out of the hospital the next day, with one Norco for the road that didn't seem necessary to me, we picked up my hydrocodone prescription. I took one hydrocodone from that bottle, feeling it was unnecessary, and have not taken any since then. I am still amazed at how little pain was involved with radical prostatectomy.

On Tuesday, February 28, 2018 the nurse removed the catheter. The rest of the day was great, not being on a tether. I was very pleased and surprised that there was no urine leakage into the pad in my pants. Hourly I went to the bathroom to urinate. Each time, the first thing to come out was little blood clot. I went to bed a bit late, about 1 AM. I woke at 5 AM needing to urinate. The pad was dry. But I tried and tried, but could not urinate. I figured that the blood clot was blocking, or maybe some swelling. At 8 AM I was at the urologist's office. They got me right in, where the same nurse who removed the cather the day before, put one back in. That was far more painful than anything else since the biopsies a few months ago, and may have been more painful than that. So, I am on a tether at least until Monday when I hope it comes out at my next appointment.

The pathology was said to confirm Gleason 4+3=7. The prostate was 25% cancer, and did extend beyond the capsule, but was within the surgical margins. The lymph nodes that were removed did not have cancer. I forgot to ask about the seminal vesicles. The urologist said it looked really good.

My hope is that this surgery got it all, and that my PSA will come in as undetectable when checked in a few weeks, and remain there forever. This is the most hope I have been able to hold since I found out what PSA at 41 meant.

Scott's e-mail address is: scottwww AT yahoo.com (replace "AT" with "@")

NOTE: Scott has not updated his story for more than 15 months, so you may not receive any response from him.