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Post by Rick Redner on Jan 6, 2015 11:36:31 GMT -5
GM, I want to personally welcome you to our post-surgery forum. Although we have more than 90 members, most men are not actively posting at this time. If it's important to you to be contact with a number of men I can suggest some forums which have more men actively posting. Our site is unique in that I've tried to set up threads in the order in which men and couples face issues related to the diagnosis of prostate cancer and prostate surgery. You can also check out our Facebook page which currently has more activity. The page is for men/couples living without a prostate. Here's the link: www.facebook.com/pages/I-Left-My-Prostate-In-San-Francisco-Wheres-Yours/336668756422536
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gm
New Member
6 months post RP mostly dry 97% & manhood is at 10 to 20% satisfaction level at of march 2015
Posts: 2
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Post by gm on Mar 29, 2015 19:43:59 GMT -5
Rick, Been off site since 1st post. Depression is still there. Using pump is tolerable but just so so satisfaction wise. Just down loaded book on saving your sex life. Per your recommendation. Leaking is pretty much under control. But sometimes a bit leaks during sex. Not all the time 1 out of 3 times it happens. Very little pain any more.
Going back to CTCA in April for check up. Got a psych appointment and doc sent info on implants. So I guess that will be discussed. But think I should wait 18 to 24 month before I make that decision.
Helps just posting it.
Will follow up after doc visit in April.
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Post by Rick Redner on Apr 2, 2015 23:06:20 GMT -5
Jim Sorry to hear you are still struggling with depression. I hated the pump and injecting. Decided to go the implant route. It was the best decision I made. Wishing you the best in this very difficult task of reclaiming your sexuality post surgery.
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mkohn
New Member
Had DaVinci Prostatectomy on September 22, 2011
Posts: 14
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Post by mkohn on Apr 8, 2015 18:37:31 GMT -5
My name is Max. I was diagnosed with prostate cancer in September 2011. I had the surgery September 22, 2011. There were a ton of complications to deal with. First off, I had an appendectomy six years prior after my appendix burst. When I went for my prostate cancer surgery, I went to a specialist because of scar tissue from the appendectomy. While I had robotic surgery, it took the surgeon four hours to get rid of all the scar tissue. Then it took another four to put my internal organs, which were not in their proper place, back to a normal location. I was in surgery eight hours and in recovery three. I went home three days after surgery with a catheter, which I wore for two and a half weeks. Ever since, my libido is strong but I don't get erections. I already went through viagra, cialis, levitra, and the rest and none did a thing. Now I'm working on injections. The injections make my penis sore for about a hour and a half. My penis has shrunk. I can masturbate to orgasm but I don't get erections. Due to my poor track records with surgery, we are keeping implant surgery OFF the table for now. Maybe later but not now. Forgot to note that I'm 53 years old now.
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Post by Rick Redner on Apr 9, 2015 9:08:24 GMT -5
Max, Welcome to this forum. Very sorry to hear that you were dx with prostate cancer at a very young age, which by the way should have been in your favor with regard to recovering erectile dysfunction. Injections were very painful to me, I had pain for more than eight hours after injecting. It got to the point where'd I lose sleep the night before I knew I was going to inject. Both my wife and I were delighted when injections stopped working. Here's a link to connect with a group of men who were under 50 when they were dx with prostate cancer: www.facebook.com/prostatecancerunder50?fref=tsAt this point we don't have a large community of men posting. If you'd like an active forum let me know and I'll give you some links. Rick
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mkohn
New Member
Had DaVinci Prostatectomy on September 22, 2011
Posts: 14
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Post by mkohn on Apr 9, 2015 17:30:31 GMT -5
Yes, I would like to belong to an active forum. I tried franktalk.org but they aren't very active either. I'm frustrated. Any help would be appreciated.
Max
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Post by Rick Redner on Apr 10, 2015 0:04:52 GMT -5
Visit my website: Whereisyourprostate.com There's a page with links to a variety of prostate cancer forums Rick
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JDT
New Member
Posts: 9
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Post by JDT on May 12, 2015 1:24:40 GMT -5
Hi, Just found this forum and have joined some others. As per my signature, I had an open RRP on 30 April and am 60 yrs old in generally good health. The good results were Gleason 6, negative margins, and no invasion of seminal vesicles. The less good result was 75% tumor volume in my left lobe and 25% in the right. Biopsy had 7/12 cores positive and my surgeon called it right and pointed out the risks with the possible high volume in the left lobe. Thus, I ended up with unilateral nerve sparing surgery. I knew that going in and also know that erectile recovery tends to be significantly worse with unilateral sparing. Surgery went well and, despite having the open incision type (previous hernia repair dictated that) I was released from the hospital the next day. Mending is going fine though after removal of the Foley, I had very slow streams for 2 days (and dry pads). Things are opening up and getting damp as well (and have restarted kegels). Besides the potential long term risk of recurrence due to the high tumor volume I was wondering if any others have had unilateral nerve sparing and what erectile recovery looks like for us? I am more curious than anything and also wondering how worth it penile rehab might be in my case? Neither my wife nor I are depending on recovery of erections--I don't define my manhood that way, instead I see myself as being able to make the right decisions in the face of less than desirable consequences. Cheers, John
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Post by Rick Redner on May 16, 2015 17:40:57 GMT -5
John Glad you found us. This isn't a very active community. I had double nerve sparing surgery. When through penile rehab including injections. 4 years after surgery I was totally impotent. I went for a penile implant and my wife and I couldn't be happier. That doesn't answer your question but it does let you know you have options. Wish you the best. Rick
W
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Post by tom840 on May 17, 2015 13:01:38 GMT -5
My PSA had been stable for years at around 4, but about 3 years ago it jumped to just over 5, so my regular doctor referred me to a urologist. He did a DRE, found nothing unusual and ordered another PSA, and found it had actually dropped to 4.8. He told me to have another PSA in a year and return, which I did. At that time, the PSA was exactly the same. Given my age, 71 at the time, he said they would check it one more time in another year and if it remained stable, he would "kick me loose", meaning at that age there was little reason to worry about prostrate cancer. Unfortunately when that year was up, the PSA had jumped to 5.8 and he found an abnormality during the DRE. That was in September of 2014. I had a biopsy in October and it showed PC, with a Gleason of 7 (4+3). The doctor ordered a CT and a bone scan, both of which turned up negative. I had been researching extensively (including reading Rick's book) since I got the diagnosis, and had already decided if I was a candidate, I wanted to go with the da Vinci robotic surgery. My urologist said it was a good choice, and I had the surgery February 2, 2015 at Northwest Medical Center in Tucson, Arizona. All went fine and I was home in 2 days, with a catheter. At my first post-op, the doctor said the pathology report was good, and the cancer was confined to the organ. My first 3 month PSA showed an undetectable reading, so I am hopeful for the future. I have been having the usual issues with incontinence, but it has been showing signs of improvement. I have found Rick's book very helpful, and am still re-reading parts of it from time to time. Rick's experience has largely been mine, and it has been useful to know what to expect next. ED issues not much of a concern yet. The surgery was "left nerve sparing", and I am working on the best course of action for dealing with that, but am more concerned now with the incontinence problem. The Kagels seem to be helping, and I am dry at night, and am starting to get the urges to urinate during the day, rather than just dribbling continuously as was the case at first. I just found this forum, although I have seen Rick's postings on Facebook. It is helpful to read what others facing this issue have gone through, and I thank Rick for making this available to others who have unfortunately joined this same club (PC) that no one wants to belong to.
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JDT
New Member
Posts: 9
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Post by JDT on May 23, 2015 1:57:07 GMT -5
Hi tom840. Sounds like things are going pretty well for you--congratulations on the 3 month mark. In a couple of weeks I will have my first post-prostatectomy PSA test, looking forward to undetectable. Incontinence has been tricky for me. In the mornings I can go a while and stay dry to nearly dry. However, afternoons and evenings I tend to find it harder to avoid peeing and often can't even tell when it is dribbling. Currently using 3 pads a day and a diaper at night so I am hopeful that in a few weeks I might be able to get a handle on this issue. From what I've read in the medical literature, I'm not too optimistic that I'll get much EF back with only 1 nerve spared but you never know. Rick's experience shows that even both nerves spared may not help. Best wishes.
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Post by tom840 on May 26, 2015 14:11:46 GMT -5
Hi JDT: I sent a reply to your note to me of May 22, but I must have done something wrong as it never appeared on the Forum. Basically I was commenting that from the information you originally published it appears you have an excellent chance to come in with an undetectable PSA when you have your first blood test. I might add that my incontinence continues to improve, but slowly, and incrementally--which parallels everything I have read. I am nearly 4 months out from the surgery now, and find I am able to get by with just a pad now, and don't really need the diapers now like I did earlier. But I am still going through a few a day, so have a ways to go. Still, even with the side effects, I think going with the surgery was the best way to have tackled the PC issue. Even the ED seems to be getting slightly better than it was. Overall I am still feeling hopeful for the future, and I wish you well, JDT.
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JDT
New Member
Posts: 9
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Post by JDT on May 27, 2015 0:09:24 GMT -5
Hi Tom840 Thank you for the reply and it is great that you are making steady progress. What a difference 4 days can make, I've had significant improvement in continence. I am 1 - 2 pads a day and diaper at night (latter mostly to guard against accidents, which I've had). Plus, I can kind of keep the pad dry for longer stretches. Clearly, this will still take another month or two but there seems to be light at the end of the tunnel for incontinence. At almost one month out from surgery I don't expect much in the erection front and there isn't anything. That one is likely to require a lot of patience. Overall, my energy levels, etc are back. Surgery was, I am convinced, the way to go for me and I was prepared for the side effects--the surgeon originally wasn't sure that he could spare either nerve, so with one saved, that was a bonus. Wish you guys well, too!
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JDT
New Member
Posts: 9
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Post by JDT on Jun 6, 2015 23:29:01 GMT -5
Had my first PSA test post-prostatectomy and it was below the detection limit or just 0. Get to go back in 6 months for testing again. Incontinence is coming along but slowly. I can stay dry to sort of dry for long stretches but if I cough, sneeze, fart, or whatever I squirt unless I prepare myself for what is coming. ED is still there.
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Post by Rick Redner on Jun 8, 2015 9:52:27 GMT -5
JDT, That's great news! Undetectable PSA is the best news a prostate cancer survivor can receive. As far as squirting with a cough, sneeze, bend, or laugh, I still do that 4 years after surgery. It's important I don't walk around with a full bladder otherwise the size of the squirt gets larger. Are you on a penile rehab program right now? Rick
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