Annual physical PSA 4.4 and doc noticed a lump on DRE. The way he was frowning I thought, this isn't good. Prior PSA 3.2 and doc felt enlargement, and 2.4 2 yrs ago. Got the bad news from urologist on Friday the 13th. Biopsy was 7/12 positive left side concentrated at apex with 2 cores 90%, remainder a lot less. All were 3+4 except one 4+3. Advised 3/4 months to start treatment. MRI indicated all still in prostate. Within 10 days I had appointments with radiation oncologist and surgeon. Both of them and urologist recommended surgery. I'm in good shape, runner for 40 yrs 5'9" 165. No meds for anything never spent a night in a hospital. Only issue was a hernia 5 yrs ago. No family PC. Confident could beat the cancer. Main concerns were the ED and incontinence (of course, I had no clue of those side effects prior to May 13). Scheduled the surgery for 6/28 at J Hopkins but decided for more opinions and research. Knew 3 guys who had PC before. Now I know 20. It's a fraternity! I spoke to all. Also got 2nd medical opinions from MD Anderson in Houston and local hospital that specialized in Cyberknife. All recommended surgery. Surgeon knows my pastor, has done 500 procedures so both were reassuring. He did stress only 1 nerve could be spared. Ouch! ED stress level rose. Surgery went well, except bladder cramps one night hurt like Hell. Out in 2 days.
Two weeks out from surgery. Feeling pretty good with the most energy to date. Walking the dog up to 3 blocks now. Only got up once last night to pee. No major accidents thus far. Urine volume increasing. Was wearing depends several days after catheter but only 1 or 2 light pads the last few days. In the month prior to surgery, I did lots of Kegels and that must have helped. Definitely recommend the before surgery approach, including stopping flow. Feel a little leakage sometimes when getting out of a chair, certain movements, etc. but overall I'm pretty pleased with continence management thus far! Pelvic muscles are a bit sore. Tried 1st 100 mg Viagra. With assistance from spouse on a scale of 1-10 maybe a 2.5. Not much, but something for initial effort. With only 1 nerve, this might be all to expect for now.
1st post surgery 3 month PSA undetectable. Only time in my life I ever wanted to be a ZERO! Incontinence has improved to now I'm wearing no pads during the normal workday. Hooray! Try to stay ahead of any accidents by going to pee at the 1st urge. Terrific improvement - can hold it up to 2 hrs. Still cannot run/workout due to stress incontinence. As for ED, there's little action even with hi test 100mg Viagra. Will keep trying.
After 4 months and 1 nerve remaining, the little blue pill finally worked! Estimated a 7 out of 10 score. Usable. It's a sloooooow recovery. I am blessed and thankful.
Last update 5 months ago finally saw some life with ED. Unfortunately, haven't come close to that since. Losing confidence despite knowing it's a 2 year process. Completed Hopkins survey last week. ED is severe. No, I'm not satisfied with that. Pills don't work and I broke the tab that controls air on my VED. Next Uro visit in 2 weeks will demand to try injections (Ouch)! The thought of it is painful, yet I'm game, as I'm feeling a loss of intimacy with my wife.
Pee management is OK. Greatest issue is running. Been doing it over 40 years. It's very difficult to control flow/dribbling now after ANY liquid. Thus, can't work out as before and suspect pre-diabetes is getting worse.
This journey has aged me considerably. before June 2016 I looked younger than my age. Not anymore. Last PSA in December was <0.1. That remains a blessing. Next one scheduled for Friday.
Now 1 year from surgery (June 28, 2016). Here are my updates on the 3 major concern areas
1. PSA remains undetectable (thank you, Lord). If the end of July, PSA continues this trend, will go to 6 month reviews
2. Continence is OK. No pads since the 8th week. Can hold it up to 2 hours during the day, though when the urge hits, there's not a lot of time to wait. Some nights, can go all night (6-7 hours) without going to the bathroom, especially when emptying immediately before turning out the light. Otherwise, only have to get up once. Overall, I urinate at least 50% times more than before. There's not a lot sometimes, but the flow is pretty strong. Only 2 occurrences of accidents in the past 10 months. I joke with my wife that, like her, I now know where the public restrooms are. As of March, I can finally do a 2-3 mile run without leakage, though I try to make sure to go pee immediately before running. I have been a runner for 40 years and it was extremely frustrating to not be able to return to that before this past spring. Occasional leakage when bending or lifting. Still doing Kegels at least everyday in the shower and more often when thinking about it.
2. ED remains a challenge, yet slowly getting better. Per the quarterly prostate cancer survey I complete for Johns Hopkins, I've improved to moderate ED. Can get some rise that's encouraging with no assistance, but usually 1st thing in the am. Cialis gave me a backache, Viagra stopped up my nose so badly I couldn't breathe and the others had minimal impact. The pump worked, but didn't hold. Have started injection. When it works, I'm 18 again for 2-4 hours. When it doesn't, I lament the pain of injection for little response. I also miss the feeling of ejaculation.
To sum up, I've had to make some concessions and adjustments, but am adapting to this new normal, while remaining hopeful of continuous improvement and zero PSAs.
Uro decided on one more 3 month PSA before graduating to the 6 month cycle. It came back as 0.2. Two weeks later, a 2nd test was 0.3. 14 months from surgery officially having the unwanted biochemical recurrence. Being a pathological stage 3, this was a 50/50 possibility. Getting a 6 month Lupron shot tomorrow and radiation of the prostate bed begins in 2 months. To complete this update, I guess one shot is monotherapy. Realize under current treatment protocol, this is my last chance for a cure. Will update on side effects once radiation starts. Joked with the wife that I'll hit from the red tees with her now. 😊
As an aside, had surgery today to remove a bladder stone that developed around a surgical clip from the prostatectomy that failed to dissolve. Was having occasional blood in urine after 2-3 mile runs. Gotta get that exercise in fellas and it proved to be worthwhile. The cystoscopy that found the stone was a piece of cake after having a catheter for 12 days last year and viewing the stone on the color screen during the procedure was also remarkable.
Halfway through 39 IGRT/IMRT salvage radiation and 6 month Lupron shot. Greatest challenge is continence with the nerves irritated from the radiation and having bladder 50 to 100% full for 7:30 am treatments. Initially, had to get off the table several times to urinate. Have released it on the table as well. One time my bladder wasn't full enough so my treatment was delayed to drink more water. Of course I couldn't hold it while the technicians tried to squeeze me in between other patients. After an hour of a drink, wait, couldn't hold it cycle, I had drunk more than 48 ounces, the seal was hopelessly broken and I was peeing every 5 minutes. My sales team was in town for an annual meeting, which I was now late for. Thus, I announced to the lead nurse there wouldn't be any treatment today as I was leaving. An additional treatment day was added. I'm up at night 2-3 times and generally pee hourly during the day. This is resulting in getting tired earlier and I'm sometimes in bed by 9:30-10 pm. Have also had a couple of accidents.
Hot flashes from Lupron have subsided to several times a day. Was hourly around Thanksgiving. More annoying than anything else. Taking calcium and vitamin D supplements. Going to the gym 3 days a week and running outside as weather permits. Noticing subtle stamina reduction.
As for ED, injections work well, but the last time produced indentation on both sides and I noticed some hardening in the injection areas. Was only doing it 2-3 times a month. Going to hold off on that for now.
Gradually changing diet. Have eliminated red meat. Never was solely a meat and potatoes person, but all diets for cancer patients seem to reference only chicken and fish. One occasion I was out and had a wonderful salad with grilled scallops. Was filling but I wasn't satisfied. Maybe I'll do a burger or steak once or twice a year. Next up is to reduce alcohol, but I do love a martini or glass of wine.
Tony's e-mail address is: powelltony1 AT gmail.com (replace "AT" with "@")