Regrets

I am 9 weeks out from surgery. I have recovered better than most. My first instinct was not to treat, I was a Gleason 7 2- 4+3, 2-3+4. Even after a good recovery, erections returned to about 90%, no leakage I feel I made the wrong choice. It will never be the same. My partner has been great, good support. However, if you want a real sex life, it is pretty much over. What good is an erection that does nothing in the end. I would rather have took my chances for a few years of normal than the rest if my life of this. And I will not be going back for ant follow ups. First instinct is always right.

[willp4real]

I had a radical Prostectomy in 2011! I agree and feel the same as you 100%. My sex life basically ended. I barely have an erection and little to no climax sensation! I have never gotten used to it. If I had the choice to do it over again, I wouldn't! To make matters worse, I'm single! It's one thing to have a supportive partner. It's a different story meeting someone and eventually having to explain that you sexually impotent! This has become my fate and I'm only 57 yeas old. 😕

[Hidden in reply to willp4real]

Thanks for the reply. I have read so much that men feel they did the right thing by having surgery. I just felt like that there has to be a lot of men that regret the surgery. It almost seems like those that if you regret it or choose not to treat it you are being shamed. Before surgery I was in another group that was mostly, if not all, straight men. I never said I was gay. At the time I was thinking of at least waiting 6 months before surgery. This was group that suppose to be judgement free. I was basically told I was an idiot. It also seems like most of those groups the men go to 2nd and 3rd opinions at high end facilities, Mayo, M.D. Anderson, etc. Well, I live in the real world in Albuquerque. It was hard to be away from work for the 3 weeks I was. Let alone chase after "only the best medical care". I am 56 and while I hate that you feel the same as me, I'm glad to hear from you. And I really get pissed when people say prostate cancer is one the most curable cancers. You never hear them say, "however, there is a downside".

[koiboi in reply to Hidden]

I am right there with you! I used to regret having the surgery, it was over 5 years ago, and I know my sex life will never be the same. People tell me at least you're alive but that quick response doesn't sit well with me. I've lost an inch in length and girth but luckily for some reason my orgasms are very intense! Not yet used to not seeing anything come out but it sure feels like it does! I'm still dealing with leakage and sometimes that bothers me the most.

[sammyd123 in reply to koiboi]

I had radical nerve-sparing surgery in 2005. I have not been able to get a natural erection when my wife and I want it yet. I have erections at night, but not at times when I want them. I have used all the pills and all the injections but have every side effect imaginable from them all.

Thank God you can still function even if there is nothing coming out. Our relationship has changed as a result, not in our love for each other, just nothing is said anymore about sex by her. I still mention it. My urologist is trying to talk me into a penile implant. Not sure about that.

[James789]

I can understand the problems you are having. I had surgery in2005 and nothing has been the same since.

[jimreilly]

random thoughts--you've got my every sympathy, it's a shock to your sex life and to your self-concept--after six years I finally feel that I've "dealt" with it perhaps as much as I can, although at 90% you're ahead of me already--as a single person it's been difficult, but I'm finally having sex again with someone else instead of just myself--of course it isn't the same as before, but it's still intimacy and sex--maybe you made the wrong choice, but maybe you've saved your life? in my own case, however I felt about the difficulties afterwards (which included significant incontinence and a second surgery to deal with that, and the second surgery was another setback to sex) I at least haven't looked back much; what's done is done; give yourself some time!

[cfrees1]

It is interesting to see the different views people have. And everyone is entitled to their opinion of course. But it sounds like i'm hearing that sex is more important to you than life. All of us who have lost erections are disappointed. And for some of us, the RP wasn't even a cure and we will continue various treatments for the rest of our lives. But the way I look at it is this, for every year that I survive, the chances that they come up with a cure grows higher. I am not looking forward to dying from this disease, the bone fractures from metastasis, being wheelchair bound, slowly wasting away. No thanks. I'll gladly give up erections to increase my chances of avoiding that future in the next 10 years. I am single too, and the loss of erections (without injections) totally sucks. But if I can come through this and need to do some penile injections to get an erection, I think I'll take that. Of course, I can always bottom.

[Vitruviusman]

I agree with you. My PSA was 4 but the gleason was only 2-3. I had the surgery. I should have never had the surgery. I would have waited a while. Now I have ED and nothing works. I am still young and vital but now with now power in the pistol.

[Hidden in reply to Vitruviusman]

I know some men feel the need to "get the cancer out of me". I did not have that feeling. I was well aware of possible side affects. I almost feel guilty that I am doing a lot better than most, but still regret having the surgery. Sometimes the "cure" is worse. If I had been 66 instead of 56, I for sure would not have had the surgery.

[Hidden]

I am from a family where there is a high rate of cancer. However, I am the only one with prostate cancer. I have lost my Dad, his 3 sisters, 2 of the 4 grandparents, my sister and 3 of my 6 fist cousins all to various forms of cancer. My brother is in cancer battle now. So I probably have seen more cancer deaths in a family than most. Some chose not to treat, some did. A couple after being declared cancer free were dead within a year or 2. Prostate cancer is usually a slow growing cancer. But you never know, it can be aggressive. The chance of going back for a follow up PSA in a year or two and hearing that it looks like it is back scares the hell out of. I have never been a go to the doctor person. While I was confident in my doctor, I still just feel like it is just a money making procedure. I just wish I had followed my gut instinct and waited. And just a side note, a couple of the relatives who chose not to treat their 2 different types of cancer, medical professionals.

[Vitruviusman]

I work out at the gym 3 times a week, am healthy very physically active, but when it comes to dating...not fun.....

[YostConner]

Hoss,

I sometimes feel that way, too (radical, 2007 at age 44). I hope there are upsides that can make you feel better. None of us can change that decision, of course, but maybe we can focus on the people around us who love us, the things we get to experience before se succumb to the disease, or other positive things. I do also recognize that my being on continuous ADT removes the problem of desire without ability. I basically have no desire despite a very supportive husband.

Are you achieving orgasm through either penetration or masturbation? Before I went on ADT, my orgasms were more intense than before surgery, though it took more work to get there. There can still be fun in trying.

Yost.

[Hidden in reply to YostConner]

Yost,

No orgasm what so ever, nothing. Desire, erection almost like before, stimulation. Makes not difference still nothing in the end. Sort of like going to a baseball game and craving a hot dog. You go get it, smell it, hold it, but you don't get to eat it. I have been told there should be very intense orgasms and the head is very sensitive. Mine is less sensitive and a little shorter. Seems getting a boner is just a waste of time.

[YostConner in reply to Hidden]

Damn. That sucks. I hope as time passes, you and your partner will find creative ways to enjoy each other. Maybe keep masturbating, too. It could be you need to find a new sweet spot. I'm really sorry you're having to deal with this.

[Scott10-10]

Hoss... I am 12 weeks post surgery and even though I do not share your views I am totally sympathetic. What I have learned in my PC journey is that nobody can truly understand or relate to you, even others with PC. We're all unique individuals that bring a lifetime of different experiences, desires, hopes, dreams, etc. to the table. People are very free with giving advice/opinions, but in the end only you know what's going on inside your head. I'm so sorry you're in this position and wish you peace in whatever way you can achieve it.

[tvankirk]

I'm still pre-op and scheduled for my surgery on 9/1. I live in Phoenix and had my 2nd look at Mayo. Going to one of the Cancer super centers like Mayo or MDA only made my diagnosis more advanced. I had been on active surveillance after my initial diagnosis of a Gleason 6. Mayo concurred with my initial stage, but did more thorough testing (3tMRI and guided biopsy) and now i'm a 7. I feel exactly as you do. I just feel like clocking people when they start rattling on about how treatable my cancer is, when they really don't have a clue as to the aftermath and toll it takes on your body. You are not alone in the way you feel....

[Hidden in reply to tvankirk]

I wish you the best of luck. Everyone reacts a little different to the surgery. It depends on the individual quirks of your body. My biggest discomforts, that I was not prepared for were, my feet were totally numb for 3 days (this happens do to the positions you are placed in on the table. Happens to about 1 in 15 i discovered afterwards), reactions to the pain meds (not cut out to be a drug addict) and allergic to the tape they used to tape my eyes shut (had an eye infection for a few days). These were strictly quirks to my body. While none of those were really big things at all, the combo of them with everything else was basically just annoying. I had scar tissue from a surgery I had when I was 14. This caused me to be on the table for 6 1/2 hours. But after a few days of discomfort I really did recover quickly. The catheter is the worst thing, talk about "draggin' the line". I have been happy with my recovery, seemed like I have done better than most. But, I will never be the same. It was a fear I had and as I have gotten past the recovery it has really set in that this is forever.

[koiboi in reply to tvankirk]

Hey, how's it going? I hope all is well and we're all here for support!

[Hidden in reply to koiboi]

Still regretting the surgery. Had mY 3 month follow up yesterday. PSA was 0.08. I am reading about guys having radiation and other treatments with lower readings. I won't subject my body to that. But the doctor said the reading was good, so I am confused. I go back in 4 months.

[koiboi in reply to Hidden]

One reason I had the surgery was because I didn't want radiation of any kind. I know that's a personal opinion but that scared me more than the surgery! Hang in there! It's been 5 years and I still go through bouts of depression and even tears! I've found that letting them out every now and again helps me tremendously! Now I'm dealing with leakage which Cialis helps but insurance won't cover. WTF?

[Hidden in reply to koiboi]

The surgery was my choice, because I did not want the radiation. I really have no leakage problem, but I do get frequency and urgency. So I just never pass up a chance to pee. Urologist did not want to give me anything for it at this point. I get generic Cialis through a Canadian Pharmacy, but it comes from overseas. I was able to get 12, 20 mg pills for just under $48. Still not cheap, but much less than the $700 for 12 from the local Costco Pharmacy, which is the cheapest. So the $200 coupon the Urologist gave was useless. It takes 3 weeks to get it. I also have talked to people about a couple more Canadian pharmacies, one was a little more. The other I just found out about and will check out later. You can legally get up to a 90 supply of your script at one time. I am just doing 30 day because of the cost. But the more you order at one time the less it is per pill.

[TucsonCowboy]

Hi Hoss,

I had surgery (DiVinci) three years ago. Yes, I have had times where I doubted if

I made the correct decision. Sex is not the same. At the time of surgery, I was

2 years out of a 17 years LTR. Sometimes I do feel no Gay man is going to desire

me now, but then I quickly realize I AM ALIVE. Had the cancer spread....

No things are not the same. I still have problems w/ urinary control and frequency.

Live is good and am I so glad I am around to experience another chapter.

(FYI: I am still w/o a LTR but have got to the point where I realize it is their loss.)

I am the same person I was but see life so differently now. Have always wanted to go

the Israel and am now preparing for a three week trip there. Life is good!!