I was in hospital the 16 Oct 2013 to say good bye to my prostate, seminal vesicles and lymph nodes. This was exactly 4 weeks after the diagnosis of a Gleason 9 (5+4).
The surgeon removed my prostate and to paraphrase his word, "I spared nerves on the left side but had to cut deeper on the other side, just in case". I felt a bit groggy after the op, but got up the next morning and showered myself. I spent 2 days in hospital. The catheter needed getting used to.
I was given some pain tablets that made me constipated and some stool softeners to help; also some meds to help with bladder spasms. The thing I hated most during that time was the catheter. I could not wait to have it removed; wearing some tight underwear helped.
I'll discuss the remainder of the year under the following headingsContinence:
Three weeks prior to my op I started doing Kegels, I also made sure I had a natural or assisted Hard-on every morning. When the catheter came out, 10 days later, I had an "accident" but was not incontinent for at least 3 days, then I remembered that I had to do Kegels, which brought on dribbling etc.
After a few months of dribbling (2.5g of urine per day), I decided to go without pads and still had the odd "accident".
My incontinence returned briefly when I suffered terrible coughing spasms for about
6 weeks in April2014. Initially thought I had a lung infection. During this time I went through three courses of antibiotics.
I was continent by April 2014 (Had the old confidence back)
And I NEVER did Kegels EVER again; I don’t do them to this day...
During summer I drank a few apple ciders and I noted that my "accidents" were more frequent during those times.
Month 15: Continence is good. Still have the odd accident, especially after driving long distances. I got to go when I got to go..and had a few accidents when the old "aim then shoot" happened in reverse order.
Month 36: Continence is good. PSA:
Waiting for my FIRST PSA post the RRP was a bit of a sweat. I was elated when I got a PSA < .01. My physical prostate was dissected by the lab and the Cancer remained at G9 (5+4), pT2a.
My ENDO and URO requested PSAs and I had 10 done thus far, the last one was a week ago. All came in at PSA < .01 (last 13 Mar 2015, the 15 Apr 2015)
Just had my 3rd year PSA < .01 (Nov 2016)
When my catheter came out, I checked the 'old fella' for response and I had a good hardon at week 5, good for penetration. The Ed Nurse told me that it was normal and most men loose it then regain it later, some much later. Whether it became a self-fulling prophesy or not, but by week 8 I was a limp as a wet rag. (that was depressing). I then started on the VED pump, and it did help a bit, but there were lots of urine in the VED tube so I stopped using it; and have not started again. Bought the VED from my local Adult Shop, it was much much cheaper than the recommended medical pump.
By month 3, there was again some movement but I could not keep an erection. I persevered with a "ring" but I think the anxiety caused the erections to wane. I went through Viagra, Levitra and Cialis. Of these PDE5i's, Levitra worked better but it gave me massive head aches. Orgasm during these first few months was painful; felt like a hernia!
By Month 6, I still used PDE5i and was also prescribed TRIMIX. The first batch had no reaction, but I continued to use very little (my max was 15units or 0.15cc). I have soft skin and is prone to developing scar tissue; my incision points for the Da Vinci procedure are still raised. Knowing this I was and still is very cautious with giving myself large TRIMIX injections. I want to stay well clear of peyronies. The orgasm pain that I experienced earlier had disappeared.
By Month 9, I could perform using PDE5i only, sometimes with "ring" and sometimes using 10units (.10cc) of TRIMIX for staying power. The onset for a good erection was normally 60-90 minutes on Viagra with TRIMIX assisted erections that lasted a good 30-40minutes.
By Month 12. I'm having more natural nocturnal erections and is starting to have non-PDE5i erections not sufficient for penetration as yet. However, I'm hopeful that as my nerves restore I'd have more natural erections and have given myself another 12 months to eventually say good bye to ED. yeah!
By Month 15, I can hold a good erection for 15-20 minutes. Still using Viagra (because its cheap). However, to be more spontaneous, I've decided to go back to Cialis and have ordered Cialis 28 x 5mg ($AUD160.00, Phew). My biggest drawback at the moment is performance anxiety; but its getting better! I'm still doing my morning exercises of getting a hardon and keeping it for more than 5 minutes.
Back onto the ring (Feb2015). I have had good results with just PDE5is (1/2 Levitra or Viagra) and using the ring for "staying power".
By Month 18, I can now get an erection on "command", its almost like it was before the RRP. Staying power has improved and its all good news, indeed!
By Month 24, I can rise to the occasion but I do use Trimix again for staying power. Viagra works just as well. I used 0.1cc the other day and lasted 90 minutes; I used 0.11 and it got me worried so by 2.5 hours I popped Pseudoephedrine.
By Month 36, I can rise to the occasion but I still Trimix for staying power. Viagra works just as well.
But, I spent a small fortune, a few thousand dollars on intervention and rehab for which I did not get any insurance rebate and/or Medicare cover. Could I have recovered without all those PDE5i and Pumps and Rings and Mast-urbations, Adult shop visits and things? I sometimes wonder!
As a G9'ner I'm going to enjoy my reprieve and this wonderful re-invigorated libido! The misses seems to enjoy the fruits of our labourTestosterone:
Most men with PCa use drugs to reduce Testosterone; I'm the opposite. After my RRP I went back to T supplementation.
By months 3, we were still cautious to start T supplementation. However, I was given a script
for Androgel which helped to raise my T levels slightly to just above the lower cut-off point
By Months 6, I went onto the FIRST Nebido/Reandron 1000 injection and followed the procedure of repeated supplementation 6 week later, then 3 monthly.
By Month 12, My T levels were NORMAL (except for the cFreeTesto that's a bit on the HIGH side 586 > 570pmol/l)
By Month 18, My T levels are OK (cFreeTesto = 500 pmol/L), total T and SHBG are in the normal ranges.
By month 24, I'm still on T supplementation. Feel good!
By month 36, I'm still on T supplementation and PSA < .01
I feel great and think the T Supplementation helps with libido and reduced ED.Summary:
I'm positive that I'll be back to "normal" in the next 18 months - no ED and maintaining a PSA < 0.01. And I was!
The T Supplementation works, I'm due for another injection every 3 months.
Things that did NOT work for me are: 1) Kegels exercises, they made matters worse post my RRP; 2) the VED pump - I get the same result with PDE5i and sometimes use a "ring" only for staying power; and 3) the first batch of TRIMIX did not WORK at all.
Lastly, this has been a journey. As a G9'ner, I look forward to happier healthier months and years ahead. My church community has been praying constantly for me, and so have I. I truly feel blessed. Both UROs commented on my G9, they said that I was extremely lucky to have a G9 detected so early before it spread to other body parts. I guess I'm fortunate in that regard.
I wont single out any, but thanks to all for your encouraging words!
And, for some who are starting on this journey I hope this helps!
DX 9/13 Age 58-- G9(5+4) 1/16cores-- PriorPSA 3.7 08/13;2.4 03/12;1.9 12/10;1.6 12/09;0.8 03/04RRP:
10/13, LNerve spared pT2aN0M0Post-op:
PSA < 0.01 still at Nov 2016
-- ED: PDE5i & TRIMIX (0.1cc) 05/14-- Continent: 02/2014Extra:
Post Edited (PSA3DOT7) : 11/2/2016 1:47:50 AM (GMT-6)