I have always been consistent in having a physical, and my PSA has been between 1.5 and 2.5 for a long time. Since about age 50 I've had BPH, and in hindsight it's probably gotten a bit worse in the past few year. Also, my Prostate was enlarged, not uncommon with BPH. Last July my PSA jumped to 4.6, and my doctor asked me to have it measured again in September, where they also measured the free vs. bound protein ratio, which was 18%, on the cancer side of the dividing line of 25%. My PSA was still 4.6 I had a biopsy on Halloween (great timing, huh?), and unfortunately got infected with E. coli which made the next two months absolute hell at times. Eventually cipro took care of it.
The biopsy showed four cancerous cores out of 12, Gleason 3+4, stage T1c because it was found in the biopsy but the prostate felt completely normal. Surgery was recommended because I'm relatively young, and a second opinion by phone with a friend who is a urologist further encouraged me to have surgery. I selected a local surgeon who came highly recommended, and answered all the questions in Patrick Walsh's book "Surviving Prostate Cancer" just the way I needed. I had an MRI to give more specifics on the cancer and give the surgeon more info, and then we met with him early in January. He has done over 1200 robotic procedures, very low key guy, felt extremely comfortable and confident with him.
Surgery was at the end of January, 15 clean lymph nodes, negative margins, now doing my kegels. So far so good. Incontinence is getting better. I am absolutely happy to have chosen surgery. PSA retest in four weeks.
Saw my surgeon today and received the great news that my PSA is undetectable. Incontinence is improving, and he asked me if it was worse in the afternoon. It is, and he said that's good because it means that while the muscles are improving with exercise, they get tired late in the day. He won't start me on any ED stuff until my next appointment, and my wife and I are handling that just fine, so no worries there. Just so happy to have found a great surgeon. Dr. W. Patrick Springhart in Greenville, SC is just wonderful. Next checkup in July or early August.
Just a quick update three months after surgery. I had read that it was common for incontinence to suddenly disappear or at least get much better suddenly, and this is exactly what happened to me. A week ago everything changed. From two pads a day to one, and maybe even less need now. So a bit of encouragement to those of us who go for weeks or even months with no improvement. I kept starting and restarting the stream, and doing the kegels, and it seems to have worked. I can see some improvement in the ED too, although there's a long way to go.
Four months yesterday since surgery and almost fully continent now, only a few drops here and there, and nothing a thin pad can't handle. Even a beer has become manageable, as that would send me running to the toilet multiple times two months ago. ED has not improved at all, not that I expected it to at this time. Next checkup with the surgeon will be in a couple more months and we will talk about that then. It occurred to me a while back that most things in life are "Normal". That's what the word means, doesn't it? I think my experience so far has been just about what one would expect, i.e., normal, for a robotic prostatectomy by a great surgeon. No real surprises. Maybe the only thing that has surprised me is that continence returned by a huge improvement in a short period of time. Twice I suddenly improved greatly from one day to the next quite unexpectedly, so if you're struggling as I was, just keep doing your exercises and it will probably just happen as it did for me. I'll report back after my next checkup.
Six months since my surgery, second PSA test at "undetectable", all is looking good. ED still a problem, but I just keep being very happy that the cancer is gone. I wear a light pad most days to catch the occasional drip, but I suppose even that is unnecessary now. I see the surgeon again in about six weeks.
So one year ago today was my surgery. Three PSA tests all undetectable, so that's the best news. Have tried Muse and Cialis and no progress so far, but still very happy with my decision. Have been able to help a couple of guys locally who are going through the same thing, and that's wonderful. The local support group is also very good, and I try to attend as often as I can. The last two times the speaker was my surgeon!
I haven't second guessed my choice of a robotic prostatectomy at all. On to enjoy year two!
So, great progress since my last update. ED is finally gone, 17 months after surgery. My doc told me it could take up to two years, so I'm a bit ahead of the curve. I had filled a prescription for Trimix and used it once successfully, but just yesterday it turned out that I didn't even need that. A bit of a warning about Trimix, though. When the RN was showing me how to inject, he gave me the standard dose, and I ended up with a huge erection that was incredibly painful. I had to have an emergency op to deal with it which cost me an extra $400. So if you go that route, start with a low dose and work up if that's not enough. The needles are the same that diabetics use, extremely thin and virtually pain free, and I figured if little kids could inject themselves, I figure that I could do it. And the cost was so much less than any of the pills. But now it looks like I'm not going to need anything at all.
I have to be careful with alcohol, as two beers will almost always cause me to leak if I'm out and walking around. Otherwise, no problems. Still very happy about my decision to have surgery.
Two years cancer free. Not much to say other than I am very happy with what my surgeon accomplished. On to year three.
2.5 years, PSA in July undetectable, everything is just fine.
Three years this month since surgery. Still doing fine.
3.5 years after surgery, just had another PSA test and it is undetectable. Life is good, everything working. Generic sidenafil 20mg at $1 a pill is a great price.
4 years since surgery, still doing well. Still very happy with the decision to have surgery. 20mg of sidenafil works well but it's not always necessary.
Five years since I was diagnosed and had a robotic prostatectomy. PSA still undetectable, life is good, very happy with the choice to have surgery.
Six years on and just got my latest PSA test results, which is (unsurprisingly) undetectable. Life is good despite Covid-19, happy to be among those whose cancer was caught early.
Just passed my six year surgery anniversary on January 27th. Still doing just fine.
Eight years since diagnosis, and still extremely happy with the robotic prostatectomy. Life is completely normal, 40mg of sildenafil when needed is all. Early detection was the key, and without the PSA test this would likely have turned out differently. Happy to answer question.
Nine years since diagnosis, doing fine. Still very happy with my decision to have a robotic prostatectomy.
Will's e-mail address is: will AT willandhelen.org (replace "AT" with "@")