My story started in September of 2020. My PCP felt a slight firm area on my prostate. He was not sure it was anything and was not really concerned since my PSA was only 2.6. But he thought it was prudent to see a urologist. The urologist and his PA were also mixed about whether my prostate felt bad so we decided on an MRI. The MRI showed a 4 mm pirads 4 suspicious spot. We were still not concerned since the suspicious spot was small and PSA was low. The doctor gave me a choice of a biopsy or wait six months and repeat tests. I thought about it for a couple months and decided to have the biopsy. The biopsy came back Gleason 8 and was in both lobes. The MRI did not show most of the cancer as suspicious. And none of the high grade cancer. Only the low grade cancer showed up as suspicious. But the good news was the MRI suggested that the capsule was intact. And a bone scan showed no signs of metasitis. We got a second opinion on the pathology and it was upgraded to Gleason 9. I should have gotten the biopsy right away rather than waiting. Currently evaluating options and leaning toward surgery. Three appointments next week and working on a fourth. Hoping to make a decision and get treatment scheduled in the next few weeks. I am worried that going slowly in the beginning may have worsened my prognosis. But I am fit and young so I am hopeful I will have a good outcome.

Met with radiation oncologist and urologist yesterday. Got some good information. I learned about low PSA with high Gleason. I read some research that suggests that surgery has better outcomes for this combination. I have a orders for PSA to see if I still have low PSA, testosterone, and CT scan. Appointments with surgeons on Wednesday and Thursday. Leaning toward the surgeon on Wednesday, but keeping an open mind. Targeting treatment no later than early May (about five weeks away). Maybe sooner if I make up my mind and can get scheduled. It is my understanding that the combination of high Gleason and low PSA can be faster growing so sooner is better.

Chose my treatment today. Decided on RARP. Scheduled for 4/19/21, about three weeks from now. Chose surgery because my aggressive form of PCa has high risk of reoccurrence so I want to save radiation for the future. I also want the more precise grading of post op pathology. I also like the clarity of post op PSA monitoring near zero. The risk of incontenence is concerning, but I think it is a reasonable risk to take given the aggressive nature of my diagnosis. Now on to pre-op testing. Scared but at the same time relieved to have made a decision.

Doctor prescribed 50 mg Biculatimide to take between now and surgery date to slow growth. I do not know if I will continue to take it after surgery. Perhaps it will depend on post-op pathology. Or maybe post-op PSA. I suppose I should have asked. Did bloodwork today, including PSA. Will be interesting to see where the PSA lands. Was low (2.7) when last checked (Sept 2020).

4/1/21 PSA 3.0. Seems to be consistent with the rate of rise for the past few years. I do not know what this means. Probably nothing.

Testosterone 608. Checked as a baseline for future treatment.

Surgery was April 19, 2021. Went as planned. Spared 50% of nerves on both sides.

Post op pathology was clean. No evidence of spread. 15% of the prostate was cancer. They were no able to re-grade the cancer due to taking Casodex before surgery. It seems taking Casodex before surgery may have been unnecessary and I was not informed about the impact on the post op pathology before taking the drug. I was disappointed since I really wanted the post op pathology information for use in further treatment decisions.

Based on the pathology is seems they could have spared more of the nerves. But given the high Gleason and low PSA diagnosis, it was probably the correct surgical decision to spare only half the nerves. I am curious about that but it is a moot point now.

Catheter was taken out April 23. Much sooner than most stories I have read. I am glad for that. I have heard of people having a catheter for 10 to 14 days some longer. I am wondering if having the catheter for shorter periods of time helps regain continence sooner. I had no urinary control for a few hours after the catheter was removed but quickly gained some control. I was told not to attempt any control for 72 hours to reduce risk of urinary retention. But I found a certain degree of control to be involuntary. I dribble, but not much. One pad per day. I sleep with a diaper as a precaution, but do not seem to need it.

I had my first bowel movement on April 22. That was a huge relief. Reduce abdominal discomfort significantly. I used mostly Tylenol for pain. Tramadol at night to be more comfortable for sleep. I think limited use of strong pain med helped with getting bowels moving. Also used stool softener. By April 24 I had some loose BM. Reduced stool softener to once a day rather than twice a day.

Have been walking more and more each day. I believe that helps.

So far so good.

Post Op PSA less than 0.02 ng/ml - "undetectable". Have asked to continue with ultra-sensitive PSA test since Gleason 9 warrants close monitoring. Decipher genetic test came back 0.26 on a scale of 0 to 1. Low risk. This is contrary to Gleason 9 high risk. I am told it is not unusual for the two to be inconsistent. Current plan is to have no further treatment unless PSA become undetectable. Some advocate for radiation treatment following surgery for Gleason 9. My doctor does not advocate that. I am inclined to forego any further treatment until necessary. However, I am continuing to research.

I am doing pelvic floor physical therapy. I am finding it extremely beneficial. My urinary control is much better than I expected two months from surgery. I do not know if therapy had anything to do with that since I do not know where I would have been without the therapy. But my running feels better than before surgery and I attribute that to the therapy. I would strongly encourage anybody to take full advantage of any physical therapy that is available.

Overall, I am very pleased with where I am. I am mostly returned to pre-surgery levels of activity. My strength and endurance is good and getting better. I have some ambitious goals for vigorous activity. I believe in a few more months I will be more fit than I was before surgery. I am determined to pull some positives out of my cancer journey.

I am nine months post-op and just received my third undetectable PSA (less than 0.02 ng/ml). Very little improvement in ED. Urinary control is almost 100%. Very occaissional dribble.

I continue to wonder if the normal monitoring protocol is sufficient for me since my PSA reached a high of only 3.0. This seems unusual for Gleason 9. If my cancer does not produce much PSA then is PSA monitoring sufficient to catch a reccurence in time to treat effectively? My doctor says the normal monitoring protocol is fine, but I am not convinced.

He has suggested that if I am concerned, I should go see a medical oncologist. That is probably the right answer, but I really do not want to see any more doctors.

My RA symptoms have almost completely go away. I am stopping my RA meds. I wonder if 15 years ago when I was diagnosed with RA, it was the cancer in early stages that my immune system was reacting to. Cancer gone => RA gone? I have read that there is some connection between cancer and RA but not a lot is known about how it works.

For now I am happy to be undetectable, have good urinary control and have my life mostly back to normal. I am focused on living.

ED significantly improved but still an issue. Cialis helps. 5 mg daily, 15 mg 30 min before sex works well enough, but not like before. Some loss of desire.

Urinary control good. Occassional leakage, mostly when tired. Not enough to need any protection. Wondering how this will evolve as I get older.

Most recent PSA less than 0.02 ng/ml. Testing every six months. Have continued ultra-sensitive PSA as I want to identify a reoccurance as early as possible. At some point, I suppose I will go back to the 0.1 ng/ml sensitivity.

No change since. April 2023 update.

John's e-mail address is: sorg67 AT yahoo.com (replace "AT" with "@")