Your experience or opinion of UCSF Hospital and followup

[Reggieman]

I had a RP in June 2016. Next week will be 30 days since the operation. I am curious as to other people's experiences there and the follow up treatments they received. Did you receive quality aid in treating your ED? If all else failed and you went to an implant, did you get quality help (qualified surgeon, quality implant device)? I'm still dealing with incontinence of course but am trying think of options down the road. I'm taking Cialis twice a week but its way too early for me to get any kind of erection results. The possibility of waiting for an erection for 3 or 4 years, if any, seems like a very long haul. I'm 70 years old and don't have that many years left to twiddle my thumbs (or anything else ).

[cincinnatus1951]

Reggiman:
I had tried to get an erection and had little success. He had me on 5mg of Cialis daily and told me to use 20mg Cialis prior to sex. The pills did not work so they had me try Muse, which is a pellet you insert into the urethra. That didn’t work. They recommended vacuum pumping and finally injections. The injections are done with a needle slightly thicker than a human hair and while they sound terrible, they really are not. Our problem was we got inconsistent results with the injections. You really never knew how long an erection would last. The range was between ten minutes and four hours.
You will have to go through all the therapies to convince medicare that you need an implant, if you do. Hopefully one of the therapies short of an implant will work. My advice is don’t wait too long between therapies to try the next one if you are not having success. It sometimes takes a month or longer to get an appointment with a good ED urologist. Make an appointment when you are in the office as you can always cancel it if you are getting decent results.
While an implant is not as scary as it sounds, you don’t want one if a lesser therapy works. The main disadvantage is there is no going back and it another surgery. Although at our age it is much less a concern than for someone who is much younger.
We finally went with the implant two and a half year after the prostatectomy. We are very glad we did. Take a look at my posts under Cincinnatus and Cincinnatus1951. That pretty well tells our story. Also look at posts by merrix and dirtman who have done a very thorough job of documenting their journey.
A couple pieces of free advice. Find a urologist in your area who specializes in ED. Most regular urologists are lost beyond pills. If the doc is embarrassed or reluctant to discuss sex and erections, you have the wrong urologist. My wife accompanied me for all of our visits and it really kept her in the loop and enabled her to be a true partner in the implant decision.
Bottom line is don’t wait too long between therapies. If you do need to head to an implant, its benefits are significant and there is no sense waiting around hoping against hope that something will finally work. In our 70s, the probability of regaining significant erectile function is pretty low.
If you’d like to chat about any of this stuff, my wife and I are willing to share our experiences. Just PM me and I’ll send you a phone number.
Good Luck
Cincinnatus

[Reggieman]

Thanks for the reply. I am disappointed in my local urologist as it took him 3 biopsies to find the cancer although my PSA steadily climbed to 38 in a straight line over 6 year period. He never mentioned that I could have had a PET/MRI scan done at UCSF. Once I had it done, after the 3rd biopsy, the cancer showed up very easily and it was identified before it escaped the capsule (or so I'm told). I was warned by my a neighbor to not trust local urologists early on but I was skeptical of his advise (he seemed to be overly cautious). I learned to be proactive after that and not just assume my local urologist was looking out for me. Today is one month since my surgery. I took my second full (20mg) Cialis today but again do not expect to see any results erection wise yet. Next month I go back to UCSF to get the results of the post op PSA test. I will check with them to see what their follow up treatments are for ED. Up till now I have been concentrating on the surgery and recovery. The incontinence drives me up the wall although I am improving. I fell like I have one foot nailed to the bathroom floor I live 100 miles from UCSF and really hate driving into San Francisco as the traffic in the Bay Area is suicidal. But, since they are a research and teaching hospital I figured that they use cutting edge treatments. My hospital experience was top notch. I read comments here about E.D. treatments and the experience of others. Of course, the experience of others is all over the map. I bought a vacuum pump a few years ago and tried it when I was having severe E. D. due to job stress. I was not happy with it and found the constriction device painful. My fear of injections is less than the fear of 4+ hours of unending and painful erections. I ordered a couple of books hoping to learn what other techniques are used to obtain orgasms with a limp willy. I'm not very imaginative and my wife is not much for experimentation, although that might change. Up to now she has been pretty much a one trick pony due to her lower libido. Our difference in libidos has been the only real problem in our marriage. That's another story however. Thanks for your reply. I'll search for your posts.

[cincinnatus1951]

Reggieman:
I sent you a PM. Pls check your folder.
Cincinnatus