Prostate Cancer And Gay Men

With so much to think about!

Hello all, Cedric here.

February 14, 2017, I had the robot-assisted radical prostatectomy. I have another followup appointment to see my surgeon/urologist in February where I hope to get some answers about the following. However, I would like for someone here to give it to me better because of their personal experience.

•It’s almost a full year of recovery and I’m still battling incontinence. Is this going to be the deal for the rest of my life?

•Erections are not there. I’ve been contemplating the penile implants. Any thoughts or feedback on this method?

•Have another evasive surgery for incontinence?

I've had more support from other's journey since I found this site. I've been up and down with this ever since it happened. I call myself playing it cool by waiting a year to be healed and accepting the outcome. It hasn't been easy needless to say.

Thanks guys for the help. Truly appreciate it.

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Just a quick note to give yourself a bit more time regarding ed. What have you tried to resurrect your erections? And, yes, things do get better. Not to an ideal state, but enough for you to be happy and loved.

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Darryl,

Thank you. I may be impatient, but we all know how frustrating this ordeal has been in everyone's cases. If it weren't for you guys, I'd probably go crazy by now.

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Hi Cedric,

Sorry to hear you’re struggling with Incontinence. How bad is it, have you had any improvement?

In my case, despite conscientiously doing the Kegels for an extended period, things hardly improved at all. My bladder would empty every time I stood up, usually within 20 to 30 seconds - not enough time to reach the bathroom and get unzipped, etc! Initially I used pads but these couldn’t cope. After 3 months I moved to Conveen urisheaths, which were a big improvement and preserved my sanity and restored some quality of life.

But after 15 months with no further progress, I had surgery (last November) to have an Artificial Urinary Sphincter (AMS800) inserted. As you probably know, you need to wait 5-6 weeks after that surgery to have the device activated. When mine was activated just before Christmas, the result was transformational. I am now almost completely dry and I only wear a thin pad if I’m going out. That easily covers me for any minor drips. If I’m just kicking around at home, I generally don’t bother with a pad at all.

Of course no artificial device is going to be quite as good as the real thing and it has its inconveniences, but it has definitely given me my life back so I would encourage you to explore this with your urologist. Don’t worry, you will not have to spend the rest of your life with the misery of incontinence! And compared to the prostatectomy, this surgery was a breeze. A very short procedure and surprisingly little pain afterwards. I had my procedure at the end of the afternoon and next morning I was comfortable walking half a mile to the surgeon’s office before he sent me home. I was somewhat swollen and black and blue for a few days but nothing to bother about.

Regarding ED, as Darryl has said, what have you tried so far? And was your prostatectomy a nerve-sparing procedure or not? Mine unfortunately was not and I have tried all the usual ED remedies without great success. I am scheduled for penile implant surgery in 2 months time. I was advised to get my Incontinence sorted out before thinking about a penile implant, due to the increased risk of infection if I was not dry - although I believe some surgeons take a different view and will carry out the two procedures simultaneously.

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Hi Andrew,

From your post, I'm at peace. In regards to the incontinence, I'm experiencing the odd accidents from certain movements like getting out of chairs. I can make the trips to the restroom/bathroom, but I have to sit in order to empty my bladder. So I do want to discuss the Artificial Urinary Sphincter (AMS800) procedure with my urologist ASAP. And with ED, I've not been successful with the pill therapy. I've tried the vacuum device and my penis becomes flaccid rather quickly after my attempts. This led me to investigate the implant option. All in all, I just want to be happy again.

Thanks again!

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Hey Cedric, Just had an appnt with penile implant surgeon after 4 yrs Big struggles with ED. He gave me confidence that this is a good way to go if the injections are not comfortable as a way to deal. Id suggest you see a surgeon who specializes and get the real low down if appropriate for you and you can get the surgery paid for or somehow affordable. All the best, Tm

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Hey Tim,

Leaning towards the implant idea, too.

Thanks, Cedric

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I'm 2 1/2 years post surgery and ED has remained a problem. I went to see a surgeon who does implants, but also prescribes Trimix for injection. After all this time with no substantial erection, the Trimix was a huge success... I'm talking rock hard. I'd recommend trying injections before having an implant. If it works for you, that should buy a lot of time before an implant is necessary. I fretted over the idea of sticking a needle in my penis, but it's honestly no big deal. It's absolutely painless, but I still get a little anxious just before injecting. In the end, we do what we have to do. Good luck with your recovery... it will get better!!

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Hi Bill,

It's weighing on my mind, too. The idea of the injection itself is not bothering me. It's the trying to decide if that's the road to go. As with hope, I'm looking for the best solution to settle this.

Thank you. I see the urologist. Thank God!

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The very idea of injections in my penis freaks me out! But you say it’s painless. Where is the needle inserted and how long is the needle.

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It is freaky, but really doesn't hurt. The needle is the same as used for insulin... very small. It almost looks like a thin wire and actually bends easily... it's short and thin. It's inserted about midway on the shaft, at the 3 or 9 o'clock position. It's definitely a nice option after years of nearly nothing for me, and worth a try! 🙃

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Thank you very much for your reply. I have not considered it for reasons stated. I am however, beyond any reasonable measure of frustration and emotional agony. (Sound dramatic, but I'm sure you can relate) I will, based on your kind reply, look into it! Thank you Bill

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Hi Cedric--

A year is a long time and I don't blame you for wishing things were more resolved; I felt the same way after a year. You still might get some reduction of incontinence, and some erectile ability back, but you're wise to consider alternatives.

As you may remember from an exchange after one of your earlier posts, I had male sling surgery (not an artificial sphincter), and I'm satisfied with the result. I didn't like the idea of the artificial sphincter, and the sling surgery seemed less invasive to me. Some people on the site have had good luck with the sling surgery and a few haven't; I'm one of the lucky ones. I'd look for a surgeon who's done quite a few of them if I were in the market again (mine had a good amount of experience).

You might also find that if you become more continent (by whatever means) that might help your self-confidence as far as sex, and that could help the ED. So if you're trying to think about what order to take things in, that might be a consideration. I found that immediately after the sling surgery my ED got worse again, but it recovered and eventually got to a better point than where it was before the sling surgery.

As far as the ED. I would certainly give the injections a try before having an implant--after all, you can still do the implant if the injections don't work or if you don't like them. I myself manage with Viagra. Not perfect but OK for me, at least for now. My surgeon told me you "have to be really motivated" to go the implant route, and I took that to mean it was an ordeal. I didn't want any more ordeals after two cancer surgeries (the other was kidney) and the sling surgery. People here who have had it can speak to the ordeal factor. Maybe it's not as bad as some people make it out to be.

Both sphincter and artificial implant? That's a lot of surgeries.Has anyone here even done both?

In an ideal world you'd still have a lot more recovery in the next six months to a year without any surgery. Here's hoping! But meanwhile, trying other things and accumulating info sure won't hurt. I'm wishing for the best for you.... but do try the injections--wish I were there to cheer you on.

Jim

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The more advice, the better for me. Thanks, Jim. I was about to get carried away with all these surgeries knowing that I'm probably hurting myself more for doing it. I get to see my urologist in a few days now. Just praying that I do the right thing and it's the best choice.

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good luck with the surgeon; let me know what he/she says, and what, if anything, you decide--but remember, you don't have to decide tight away....and while it sometimes pays to ask "what would you do if you were in my position", some surgeons don't really put themselves in your place mentally, they just recommend what their specialty leads them to believe is a good and efficient (for them) thing to do

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Hello,

I had radical prostatectomy in January 2011. I had issues with incontinence initially, but it improved after a year or so. I still have trickles from time to time, which is always disheartening.

As far as ED is concerned, still nothing! I’ve tried Viagra and Cialis. Neither has been effective! The thought of a penil implant is scary and I’m not sure my insurance will cover it. I obsess about my physical limitations and fears that I will never find love.

So, as far as it getting better is concerned, it’s different for everyone. For me, it has not gotten better! Seven years later I’m emotionally tortured, single and broken!

To some degree I’m angry and would like to channel that energy by speaking out about prostate cancer, so other men will consider every option, including avenues besides what a urologist would recommend. I feel misinformed andl duped!

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Hi Willp4real,

I get you. I am somewhat in agreement since this has bothered me from the start. I know we are to be positive about the outcome, but as a single guy, it sucks more and more when I think about it. My anger is just as bad as the slight depression that accompanies it. Thank you for replying. I pray we find happiness soon.

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