In Mar 2011, my PCa journey began when blood work up during a physical revealed elevated PSA. I had skipped annual physical exams from Nov 2008 to Mar 2011 which was a mistake. My PSA in Nov 2008 was 2.0 and jumped up to 7.39 in May 2011. DRE was normal (per primary care physician). I really had no symptoms of PCa at this point. My sexual and urinary functions were normal. My primary care physician put me on Cipro for 2 weeks to rule out any infection causing the elevated PSA, and while my PSA went down to 5.74 in May 2011 it was still too high so he referred me to Urologist. My father had PCa at 70 years old (circa year 2000), and while I knew I was at risk I didn't think that I would develop PCa at 54 years old. My father went through RT and is fine today.

In May 2011, I visited my Urologist and he conducted a thorough exam. Positive DRE as he indicated that the right side of the prostate felt 'firm'. I could tell he was concerned. He recommended biopsy which he performed later that month. Biopsy was a bit uncomfortable and he took a 12-core sample, six from R-side and six from the L-side. I could tell again that he was concerned. Evidently there were some suspicious areas in my prostate that he noted during the procedure that didn't look normal. Biopsy came back positive for adenocarcinoma in 2 of 12 cores, both on the R-side with Gleason sum 8 (4+4). I had expected bad news and done some research on the internet but I still knew very little. He went through his routine to tell me treatment options and he answered questions. He recommended Robotic Surgery because of my age and good chance for cure. He felt the cancer was confined in the prostate gland (clinical T2a) but as I found out later it's really difficult to know this for certain. To verify the result I had the biopsy sent to University of California at San Francisco (UCSF) where they agreed with the Gleason grade 4+4.

In Jun and Jul 2011, I went to many consults that included both Stanford Medical University and UCSF where I met with Urologic and Medical Oncologist. I also attended a support group meeting just 1 day after receiving my biopsy results. I continued doing extensive research on the internet and was already leaning towards surgery. I read a lot about prostatectomies, nerve sparing and non, as well as the other treatment options. I felt nerve sparing prostatectomy was the best option for me as I could get the cancer out, have a back-up plan for radiation if surgery failed, retain some sexual function, and I had good chance for a quick recovery from surgery. I have 3 young boys at home, so I wanted the best treatment possible that would allow for me to be around to watch them grow. I explored both open and robotic prostatectomies. At UCSF, I had consult with surgeons (Cooperberg and Shinohara), and oncologist (Harzstark). I also had trans-rectal ultra sound where Shinohara indicated there was 'bulge' on the R-side but he could not tell if there was extra prostatic extension. Harzstark recommended surgery because of my age and good chance for full recovery. At Stanford, I met with 2 surgeons, Brooks and Gonzalgo. I did other consults outside of university setting but I was really impressed with both Stanford and UCSF. In early Jul 2011, I made final decision to have surgery at Stanford. Gonzalgo was the chosen artist. He had worked at John Hopkins under Walsh and did fellowship at Sloan Kettering under Scardino, and had performed several hundred robotic surgeries. I'll tell you that I had many DRE's during my search for treatment. Each doctor had different comment regarding my prostate but most said they felt firmness on the R-side. Gonzalgo at Stanford gave me a 7/21/2011 surgery date. He did order some imaging, Pelvic CT and Bone Scan, and both were negative for systemic or metastatic spread (for what they could see on the imaging).

On Jul 21, 2011 I had surgery. I had early morning show at the hospital and surgery from 8a to 11a. Woke up in recovery room and it felt like no time had passed. I remember being wheeled into the operating room and seeing the robot. Recovery went well. Went home the next day, gained strength, and catheter came out in 1 week.

Pathology came back as; Gleason 8 (4+4), extra prostatic extension (bi lateral), seminal vesicles negative for PCa, lymph nodes taken were negative for PCa, and negative margins. Stage was pT3a N0 MX. I was a bit disappointed and had hoped for Gleason downgrade and no EPE.

I did use the pain medicine after surgery but overall I felt okay. Yes, catheter was a pain but I got used to it for that short period of time. First bowel movement was awkward but not a big deal. I walked frequently in the neighborhood and returned to work 4 weeks after surgery.

Continence returned slowly. I went from 2-3 pads/day in the first month to 1-2 pads/day in the second month. In the third month I went through 1 pad/day but there were many days were I was completely continent. After 3 months I no longer needed pads.

ED was an issue after surgery. I started taking 10 mg of Cialis twice a week about 6 weeks after surgery. I noticed 8 weeks after surgery I would have nocturnal erections and with stimulation that I could have erections for intercourse. Later, when I stopped taking Cialis, I noticed that my nocturnal erections disappeared and it was more difficult to get and maintain erections for intercourse.

In Oct 2011, went for first PSA test. I was really sweating this one out. I was really scared that I would have persistent PSA and that the cancer was not gone. PSA came back as undetectable. I had the standard PSA test and not the ultra-sensitive. I'm fully continent at this point. ED is still an issue. I'm taking 10 mg of Cialis twice a week. I have the ability to have intercourse but not with firm erections like that of pre surgery.

In Jan 2012, went for second PSA test. PSA is Non detectable again. I'm having a lot of anxiety with the PSA tests. I'm using same laboratory for each test to avoid any variations in results. I'm fully continent. ED is still an issue. I'm still taking 10 mg of Cialis twice a week. I have the ability to have intercourse but not on consistent basis. I began to notice that I have venous leak. I find that most of the time I do not become fully erect. Works better if I'm standing up as I can retain blood in lower extremities. I have not at this point started using erection ring or VED.

In Apr 2012, went for third PSA test. PSA is Non detectable again. I'm fully continent. ED is still an issue. I'm still taking 10 mg of Cialis twice a week. I'm still able to have intercourse but not on consistent basis. I'm certain that I have venous leak. Again, works better if I'm standing up. I still have not at this point started using erection ring or VED.

In Jul 2012, went for 1 year PSA test. PSA was .1. Previous non detectable results were <.1. Some alarm re PSA recurrence but not in panic mode yet. Met with Urologic Oncologist who performed the surgery at Stanford and we agreed to wait until next PSA test before we begin any treatment. He suggested we wait 8 to 13 weeks until next PSA test. I did get referral at Stanford for consult with Radiation Oncologist. I traded emails with Medical Oncologist at UCSF who recommended retest in 4 to 6 weeks so that we have some more PSA data points. ED is still an issue but PSA recurrence and next treatment are my biggest concerns. I'm really worried that I have systematic disease (micro metastasis) v PCa recurrence in the prostate bed. If not in the prostate bed, where is it? Do not want to radiate prostate bed that's already cancer-free and suffer the side effects of salvage RT (Salvage Radiotherapy - SRT).

In Aug 2012, I had consult with Radiation Oncologist at Stanford (Hancock). I had a ton of questions answered re SRT. I had used the Sloan Kettering nomogram for SRT and my progression free probability at 6 years given my Gleason sum and time from surgery to recurrence was not good. The big unknown at this time is PSA doubling time if I have a recurrence. My pre surgery PSA DT was about 24 months but that was with a prostate. I don't think that's applicable without one. Also, in the Sloan nomogram I noted that SRT outcomes were much better when combined with HT (Hormone Therapy - alo known as ADT - Androegn Deprivation Therapy). Radiation Oncologist recommended we wait for another PSA test before we move on treatment. PSA was 0.1 on 7/25/12. He did order another PSA test, ultrasensitive this time, and the result was .13 on 8/14/12. [It is not wise to compare normal and Ultra Sensitive PSA tests since they are not directly comparable] I plan to take another PSA test on 9/19/12 which is 8 weeks after my first spike on 7/25/12. He did indicate that if we do next treatment that he would recommend external beam SRT (5 weeks, 35 sessions, I think about 60Gy/session) with HT for 3 months. HT to begin one month before SRT begins. He said HT would be Lupron and bicalutamide. I asked him if he was taking me to castration levels and he indicated yes. We discussed side effects, and as scary as they may seem I'm prepared to do HT with SRT if needed. I'm fully continent. ED is still an issue but I'm not worrying about this at this point. I am concerned as to the effects of SRT on the sexual function I have left as well as continence but I'll deal with that when the time comes.

PSA rose to .20 ng/mL in mid Sep 2012 so it was time to act on Salvage Radiation Therapy. I met with Radiation Oncologist at Stanford to go through next steps. I had MRI in late Sep that did not reveal anything abnormal although PSA was very low and I didn't expect them to see anything. Radiation Oncologist developed plan to deliver radiation to full pelvis to include prostate bed and nodes. The plan was 2Gy/session, 35 sessions total, first 25 sessions were for prostate and nodes, and final 10 sessions were for prostate bed only. I started ADT2, Lupron and bicalutamide, in early Oct for a to-be-determined duration. I think Radiation Oncologist recommends 4 to 6 months. I did question why not add 5-alpha reductase inhibitor (Avodart) to complete ADT3 but blood work 30 days after I started ADT2 revealed that my DHT was full suppressed.

Completed salvage radiation therapy at Stanford University at the end of Dec 2012. 70 Gy over 35 sessions to both prostate bed and nodes. No issues with the radiation treatment. Transferred follow on treatment to UCSF in Jan 2013 and currently on hormone therapy (ADT2). I have all the side effects that go with ADT2. I'm 9 months into ADT2 and my current medical oncologist and I have not yet defined the end point. We discuss this every 3 months. I have my sights/hopes on 12 to 18 months total time on ADT2. I'm on strict diet and exercise program but even with this I've managed to gain a few pounds. Sexual function is nil (no libido) but continence good.

I completed ADT2 in Apr 2014 (last Lupron injection Jan 2014 and then I stopped bicalutimide Apr 2014) following salvage radiation therapy (SRT). I struggled with the decision as to ADT2 duration following SRT and finally settled on 19 months with my medical oncologist at UCSF. The side effects were bad as expected, hot flashes, fatigue, ED, no libido, and so forth but daily exercise helped a lot. PSA remains undetectable today. Testosterone (T) is recovering slowly as of this posting. I had expected T to fully recover by now (since Apr 2014) but that is not the case. T at last check at end of Aug 2014 was 78 ng/mL whereas pre-SRT it was +300 ng/mL. So, I'm in a wait and watch mode right now, watching both T and PSA, and hoping that PSA remains undetectable once T recovers. I did recently start taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed in that if there are any more prostate cancer cells remaining that I keep them in check but the dutasteride is not mainstream medical practice today. I'm hoping for a long durable remission period. My sexual function is in rehab following Surgery and SRT+ADT2 until my libido and T recover. I did start using a vacuum pump (VED) several months ago as well as taking PDE5 (Tadalafil/Cialis daily) for therapy but this is not going well and is really frustrating. My continence is good. I have some stress leakage at times but this is not a big issue.

Currently, I have an undetectable PSA and normal Testosterone (T) following prostatectomy (Jul 2011) and salvage radiation + ADT2 (Oct 2012 - Apr 2014). I was on ADT2 for 19 months and it took my T about 18 months to recover, longer than I expected. I'm now taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, although I'm only taking .5 mg twice per week, so I'm taking the minimum necessary. I'm measuring PSA, T, DHT, and Vit D every 3 months. I'm also following the Snuffy Myers protocol for supplements; Pomegranate, resveratrol, and bio-curcumin. I'm maintaining Vit D level between 60 to 80 mg/mL, requiring that I take about 7000 IU daily. My sexual function is probably as good as it's going to get following these treatments but it works. My continence is good.

Send me any questions for any of these treatments.

Hi, little change for me this past year.

Fortunately I still have an undetectable PSA and normal Testosterone (T) following prostatectomy (Jul 2011) and salvage radiation + ADT2 (Oct 2012 - Apr 2014). I'm still taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, but now taking .5 mg 3x per week, so I'm taking the minimum necessary. I'm measuring PSA, T, DHT, and Vit D every 3 months. I'm also still following the Snuffy Myers protocol for supplements; Pomegranate, resveratrol, and bio-curcumin. I'm maintaining Vit D level between 60 to 80 mg/mL, requiring that I take about 7000 IU daily. No change in sexual function and continence which are as good as they're going to get following these treatments.

Send me any questions for any of these treatments.

Hi Everyone,

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm still doing PSA testing every 90 days.

I'm still taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, and still taking .5 mg 3x per week, so I'm taking the minimum necessary. I'm considering discontinuing the dutasteride soon as I'm uncertain if it's adding any benefit and I feel that I'm losing some libido in the process. I measure DHT once per year.

I'm also still taking Vit D, pomegranate, resveratrol, and bio-curcumin. I'm maintaining Vit D level between 60 to 80 mg/mL, requiring that I take about 7000 IU daily. No change in sexual function and continence which are as good as they're going to get following these treatments.

Send me any questions for any of these treatments.

Hi Everyone,

There are a few changes re supplements below.

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm still doing PSA testing every 90 days.

I'm still taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, and still taking .5 mg 3x per week, so I'm taking the minimum necessary. I measure DHT once per year.

I'm now only taking Vit D, and have discontinued pomegranate, resveratrol, and bio-curcumin. I'm maintaining Vit D level between 60 to 80 mg/mL, requiring that I take about 7000 IU daily. No change in sexual function and continence which are as good as they're going to get following these treatments.

Send me any questions for any of these treatments.

Hi Everyone,

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm continuing PSA testing every 90 days.

I'm still taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, and still taking .5 mg 3x per week, so I'm taking the minimum necessary. I measure DHT once per year.

At my 10 year mark of undetectable PSA, I'm planning to discontinue taking the dutasteride and will extend PSA testing to every 6 months. That is in Nov 2022, so some time away from now.

I'm also taking Vit D to maintain 60 to 80 mg/mL, requiring that I take about 7000 IU daily. I measure Vit D once per year during annual physical.

No change in sexual function and continence which are actually good. I do take generic Cialis daily (5 mg) as I think I need the added boost as I prefer the spontaneity for sex in lieu of the 20 mg tab for on demand.

Send me any questions for any of these treatments. For those just starting treatment, good luck.

Hi Everyone, and here’s the update:

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm continuing PSA testing every 90 days.

I'm still taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed, and still taking .5 mg 3x per week, so I'm taking the minimum necessary. I measure DHT once per year.

At my 10 year mark of undetectable PSA, I'm planning to discontinue taking the dutasteride and will extend PSA testing to every 6 months. That is in Nov 2022.

I'm also taking Vit D to maintain 60 to 80 mg/mL, requiring that I take about 7000 IU daily. I measure Vit D once per year during annual physical.

Now 66 years old, I have begun to see change in the past year in my sexual function, I suspect related to age rather than my treatments but I’m certain surgery and radiation accelerated this as well. I do take generic Cialis daily (5 mg) as I think I need the added boost as I prefer the spontaneity for sex in lieu of the 20 mg tab for on demand.

Send me any questions for any of these treatments. For those just starting treatment, good luck.

Hi Everyone, here’s the update:

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm now checking PSA every 6 months.

I have discontinued taking dutasteride (Avodart) to keep dihydrotestosterone (DHT) suppressed. I no longer measure DHT.

I have discontinued taking Vitamin D supplement.

Now 67 years old, I continue to see change in my sexual function. I still take generic Cialis daily (5 mg) as I think I need the added boost as I prefer the spontaneity for sex in lieu of the 20 mg tab for on demand. I occasionally take up to 20 mg for boost.

Continence is good although I do have stress incontenience at times.

I do daily pelvic floor exercises, brief yoga, and 30 min cardio on stationary bike. Total 90 min per day.

I have some other medical items, re bicuspid aortic valve, so I will have valve replacement later this year.

Send me any questions for any of these treatments. For those just starting treatment, good luck.

Hi Everyone, here’s the update:

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm now checking PSA every 6 months.

Now 68 years old, I continue to see change in my sexual function. I still take generic Cialis daily (5 mg).

I have been monitoring a congenital heart defect for many years now. My aortic valve is severely narrowed and affecting blood circulation and this has progressively got worse these last 2 years, and so has my sexual function, so I don’t know for sure if this is result of my prostate cancer or the congenital heart defect.

I will have open heart surgery for a new aortic valve in Sept 2024.

Continence is good although I do have stress incontenience at times.

I continue to sk daily pelvic floor exercises, brief yoga, and 30 min cardio on stationary bike. Total 90 min per day.

Send me any questions for any of these treatments. For those just starting treatment, good luck.

Hi Everyone, here’s the update:

My PSA is still undetectable following surgery (2011) and radiation/ADT2 (2012-14) treatments. I have normal T level. I'm now checking PSA every 6 months.

Now 68 years old, I continue to see change in my sexual function. I still take generic Cialis daily (5 mg).

I have been monitoring a congenital heart defect for many years now. My aortic valve is severely narrowed and affecting blood circulation and this has progressively got worse these last 2 years, and so has my sexual function, so I don’t know for sure if this is result of my prostate cancer or the congenital heart defect.

I will have open heart surgery for a new aortic valve in Sept 2024.

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