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.

Completed 39 radiation treatments January 24. 1st 25 hit the lymph nodes and area around where the prostate was. Next 10 narrowed the focus to the prostate bed only. Last 4 more intense and specific to the bed area. Within a week, my energy improved. Within 30 days, I was down to one time to the bathroom at night. Have had a couple of occasions not making to the bathroom in time, however. Frustrating. Still have some hot flashes, knowing it will be another 6 months or more to regain testosterone from the one time 6 month Lupron injection last September. Latest PSA <0.1. Next PSA in 6 months when testosterone returns. Also, regaining strength, as measured by gym workout slowly increasing from the past few months of doing a max of 60% of normal.

ED remains a challenge. Recently, 1st injection in a few months with same Peyronnies result. Also smaller, but effective. Pump no longer gets length, only width. Feel my sexual prowess is slowly fading away...

Frequent this site often. Realized hadn't updated my story. Should have September 2018. At that time, effects from 6 month Lupron shot in conjunction with radiation had worn off. Hair grown back in groin and legs. PSA undetectable. Once or twice a month, would have an issue of not getting to a bathroom in time. That was certainly frustrating. Libido strong, but didn't want to inject again with hourglass Peyronies developing. Uro gave referral to the in house implant specialist. Meanwhile would try Cialis again. However, my wife was diagnosed with early stage breast cancer. Her treatment rightly so became priority

Continuing to catch up with my story...

April PSA 0.2. Rechecked in May still 0.2. August PSA 0.4. So, PC is not cured and is not going away. Next PSA in December should provide a clear pattern for doubling time. My history indicates a 14-15 month recurrence from the end of previous treatments so this is most likely aggressive. I am disappointed that there is little to do now but wait until the PSA rises and then be medically castrated until that is no longer effective. I hated the temporary loss of body hair, hot flashes, shrinking balls and reduced libido, muscle mass and energy from the 6 month Lupron previously. Knowing this will most likely be permanent is disconcerting. It seems breast cancer research is much more advanced with treatments for prevention of recurrence (Btw, several have inquired about my wife and her treatment. She is doing well and in remission).

ED remains, but do notice nocturnal hard ons every now and then and even semi hard ones during the day. Using the electric pump twice a week seems to have helped with the hourglass peyronnies. Trimix does the trick for occasional intercourse.

Continence is good about 99% of the time, which means about once per month, I have a leakage that underwear needs to be changed. Only wear a light pad when jogging.

Still eat very little red meat, yet do enjoy a glass of good red wine and a weekly visit to my favorite restaurant bar for martinis and great conversation.

I think back to 3-1/2 years ago before this journey started vs. the new normal of today (ahhh) vs. what the next normal could be...ugh. All I can do is continue to live my life until I can't.

A lot has happened since September. Steady climb in PSA. 11/19 1.4. 1/20 1.7. CT scan clear. Bone scan one suspicious rib area. Aetna refused PET scan until PSA reaches 2.0. Decision made in consult with oncologist and radiation doc to wait for next PSA and subsequent tests to determine treatment plan. 6/20 3.5. Doubling time of 5 months. New round of tests forthcoming.

As scans confirmed rib lesion, I did 5 IMRT radiation in August 2020. PSA was 3.5. Would continue this regimen as long as disease was considered low volume. Updated scans in November after 3 month wait showed that lesion diminished, but new potential hot spots in 2 left ribs. And, PSA leapt to 15! My testosterone was slightly above average. One outcome of the STAMPEDE trial recommended daily Zytiga (Abiraterone) with Lupron delayed disease progression with low volume (<4). Of course, this didn’t seem low volume to me. Was disconcerting to see doc report ordering the Zytiga as palliative care. Said he hopes to still be treating me 5 yrs from now. Ouch! In Dec and Feb 2021 PSAs were <0.1. Side effects have been hot flashes and noticeable loss of muscle tone. This disease is accelerating aging. Due to the pandemic, I had to give up fitness center activities. Next tests in May will look for osteoporosis.

May 21 bone scan showed early osteopenia. Will scan again in May 22. For now, on the 6 month PSA and other tests review cycle. Double ADT (Zytiga+Prednisone and Lupron) is keeping the disease dormant 1 yr into this treatment. Side effects include torso hair loss, bloating and awful gas, appalling (to me) loss of muscle, periodic dizziness, and occasional upper back discomfort (where the small lesions did their damage). Have little desire for sex and the equipment is now a lot smaller anyway...erection achieved only via injection. Continue to take vitamin D, C and calcium. Drink lots of Pom juice. Eating red meat occasionally...trying grass fed. Bought out from corporate position and now work part time in family business. Blessed that I can have days off and that the treatment is working. Will update in 6 months.

Now 18 months on Lupron (6 month shot) plus daily Zytiga and Prednisone. Its the most effective treatment I've had in terms of length of time being cancer free and thus I am blessed and grateful. Newest bone scan showed no evidence of cancer. Will continue with this ADT2 regimen. Still get hot flashes, have excessive gas and bloating, and muscle/strength is about 60% of prior, despite regular gym visits. As an example, I use scissors to open food packaging that 2 years ago could easily open with my hands. Sex life is done, as there's nothing left to inject into, but I have little desire. Almost any excitement results in urine leakage. Was given a zoledronic acid (Reclast) infusion to combat osteopenia. Had a 36 hour reaction of flu like symptoms. Stay in the fight everyone!

Update redo from November. Post crashed due to emoji. As of November 2022, still undetectable PSA after 2 years of 6 month Lupron+daily Zytiga and Prednisone. Longest treatment success in this PC journey. Penetrative sex is a no more. Muscle loss is appalling. Still have occasional urinary issue. Definitely not the man I used to be. Yet, still being seen and not viewed and enjoying retirement. Have maxed my payments annually with previous health care plan. Will see how Medicare and Medigap works this year. Continue to get Zytiga through hospital treatment plan.

After 3 years on Zytiga, Prednisone and 6 month Lupron, I remain castrate sensitive with undetectable PSA. Thus, my oncologist is pausing my treatment to give some relief to the side effects and to monitor results. Admittedly, a little apprehension...realizing the pc could certainly return, but knowing this treatment should still be effective if/when it does. Also understanding that it will probably take up to 6 months to fully regain testosterone to whatever level and eventually I could become resistant to continued treatment. Have also experienced a couple of nocturnal semi erections, though after 4 years of hormone treatment, there isnt much to work with. LOL. See the doc in 6 months for new scans and tests.

Now 6 months with no treatment. PSA undetectable and bone scan clear, though now developing a form of scoliosis...maybe from 3 years of double hormone treatment? T level is 98...was 356 when daily Zytiga and 6 month Lupron began November 2020. As testosterone increases, we'll see if cancer cells are fueled again. Getting occasional nighttime semi erections, but not anticipating a return to sexual activity after 3.5 years of dormancy. Feeling blessed for this current remission.

Well, after 12 months of no treatment, remission is over. T level is up to 239 and so is trace PSA. Will wait 3 months for increased PSA, then schedule auximin PET scan and treat from there. Will be a fun spring...

Tony's e-mail address is: powelltony1 AT gmail.com (replace "AT" with "@")