Life after prostate cancer

Posted by tuckerp @tuckerp, May 9 6:13pm

I am new on here. Age 72. I had RARP in Jan 2020. surgery/biopsy revealed 1 out 12 samples with cancer. Gleason 3+3. Margins were clean. I elected to remove it. I had a one week catheter removal and a one month checkup. I am very active also use heavy weight training. All PSA tests have been < .1. Pet scan in 2022 was negative. I am not continent and I am impotent. Testosterone level is 705. I turned to Mayo clinic for a followup in 2023. I have not seen my initial Dr. Mayo suggested an AUS. Also prescribed cialis. Since I removed the catheter I wear a condom catheter during the day. At night with 4 bathroom trips I can sleep without wearing anything. I am married but my wife has terminal cancer. (4 yrs). I have no opportunity for an erection. I do have a partial during the night. I have not tried the cialis . My question would be where do I go from here. Any suggestions. I did not ask for any help when I did the surgery and maybe that was not a good idea.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Thanks for joining our group. There are a lot of wonderful men and women who contribute to this group and will cheer you on on your journey. Regarding the AUS my surgeon and I discussed this at length as an option if I couldn’t not regain continence. While I wasn’t looking forward to another surgery I was committed to getting one if need be. Fortunately, I have not needed one. Based on your comments, I think an AUS would be very helpful and help you regain a better quality of life. I have no doubt that there are some exceptional surgeons at Mayo that can perform the procedure.

Sorry to hear of your wife’s poor health. I wish you both the very best on your journey together.

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@robertmizek

Thanks for joining our group. There are a lot of wonderful men and women who contribute to this group and will cheer you on on your journey. Regarding the AUS my surgeon and I discussed this at length as an option if I couldn’t not regain continence. While I wasn’t looking forward to another surgery I was committed to getting one if need be. Fortunately, I have not needed one. Based on your comments, I think an AUS would be very helpful and help you regain a better quality of life. I have no doubt that there are some exceptional surgeons at Mayo that can perform the procedure.

Sorry to hear of your wife’s poor health. I wish you both the very best on your journey together.

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I believe my Mayo surgeon is one of the best. I put the operation on hold. I can not afford any down time. Concerns I have are how reliable is the equipment? Might I need additional surgeries? How comfortable is it to use? My testing revealed a hyperactive bladder. Am I going to be going pee with so much urgency that it makes it useless? Does it still leak? Especially with urgency. Does it effect sexual activity(assuming I have any).? My condom catheter does not have any of those problems. Problems I have are inconvenience. I also have stripped all the pigment off my penis from the adhesive. I did Kegel exercises in the beginning . Did I give up to soon? The condom cath lets it free flow. Would kegels still help? Testing revealed I have a pretty good muscle when I hold it. It just releases when I am not.

My wife has GBM . We are on hospice. But thanks.

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@tuckerp

I believe my Mayo surgeon is one of the best. I put the operation on hold. I can not afford any down time. Concerns I have are how reliable is the equipment? Might I need additional surgeries? How comfortable is it to use? My testing revealed a hyperactive bladder. Am I going to be going pee with so much urgency that it makes it useless? Does it still leak? Especially with urgency. Does it effect sexual activity(assuming I have any).? My condom catheter does not have any of those problems. Problems I have are inconvenience. I also have stripped all the pigment off my penis from the adhesive. I did Kegel exercises in the beginning . Did I give up to soon? The condom cath lets it free flow. Would kegels still help? Testing revealed I have a pretty good muscle when I hold it. It just releases when I am not.

My wife has GBM . We are on hospice. But thanks.

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Your questions are valid and important. Regarding Keagles my assumption is just like building up any other muscle group for strength it’s never too late to give it another try. A close friend of mine was having poor success with continence until he saw a pelvic floor therapist. The therapist analyzed what he was doing, figured out what he was doing wrong, was able to explain to him how to do it right. Now he’s fully continent. Might be worth a try.

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You've come to a good place to ask your questions. I will attempt to give you a different point of view. First, there are a bunch of men who somehow are continent within days or weeks of the operation. I truly believe the majority are not in that boat no matter what the doctors say. Most of us struggle to get our continence back. I am 15 months out from my RALP and can finally say I am very dry most of the time. I firmly believe that Pelvic Floor Physical Therapy is why I finally got to this point, and I am committed to do these exercises most every day for the rest of my life. But I said "very dry" because there is still the occasional dribble or squirt that I must be prepared for. Friends who had the same surgery years ago still put a thin pad in their underwear just for this purpose. I can live with that. But when I am active (pickleball, golf, hiking) all bets are off. It is called stress incontinence and I leak unknowingly while I am engaged in the activity. I will admit the volume is steadily decreasing and I hope one day a thin pad will be enough to handle it. But for now I need thick pads, a condom catheter or Depends to keep me from embarrassment. The male sling or AUS is supposed to fix this issue, but I am reluctant to have the surgery. I just don't believe their success ratios anymore. As for erections, I am still waiting for my first natural one. My VED creates them as therapy for penile rehab and my fingers are crossed that the nerves will come back someday. Good luck.

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@tomf

You've come to a good place to ask your questions. I will attempt to give you a different point of view. First, there are a bunch of men who somehow are continent within days or weeks of the operation. I truly believe the majority are not in that boat no matter what the doctors say. Most of us struggle to get our continence back. I am 15 months out from my RALP and can finally say I am very dry most of the time. I firmly believe that Pelvic Floor Physical Therapy is why I finally got to this point, and I am committed to do these exercises most every day for the rest of my life. But I said "very dry" because there is still the occasional dribble or squirt that I must be prepared for. Friends who had the same surgery years ago still put a thin pad in their underwear just for this purpose. I can live with that. But when I am active (pickleball, golf, hiking) all bets are off. It is called stress incontinence and I leak unknowingly while I am engaged in the activity. I will admit the volume is steadily decreasing and I hope one day a thin pad will be enough to handle it. But for now I need thick pads, a condom catheter or Depends to keep me from embarrassment. The male sling or AUS is supposed to fix this issue, but I am reluctant to have the surgery. I just don't believe their success ratios anymore. As for erections, I am still waiting for my first natural one. My VED creates them as therapy for penile rehab and my fingers are crossed that the nerves will come back someday. Good luck.

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This unfortunately is a more realistic answer. I am just a little over 4 years in. What is a VED.

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It stands for vacuum erection device, otherwise called a penis pump. Either manually operated or machine driven it creates a slight vacuum around your penis drawing blood into it. Alone it is good for rehabbing your penis, but with a tension ring it can help maintain an erection good enough for intercourse.

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oh brother. things are getting complicated.

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First off, so sorry to hear about you wife.

I recently had my RARP and know the side affects will last a while. I read many posts from the guys in this forum about doing the kegals everyday without fail. Many have had good outcomes being faithful doing them regularly. As far as the VED, is a medical grade one? I am going to be purchasing one within a week or two. Any advise you can share would be great.

They said no rehab until 6 weeks post surgery.

I hope everything works out for you.

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@batsam10

First off, so sorry to hear about you wife.

I recently had my RARP and know the side affects will last a while. I read many posts from the guys in this forum about doing the kegals everyday without fail. Many have had good outcomes being faithful doing them regularly. As far as the VED, is a medical grade one? I am going to be purchasing one within a week or two. Any advise you can share would be great.

They said no rehab until 6 weeks post surgery.

I hope everything works out for you.

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VEDs can help some men with ED but have to be used with caution as damage to the penis can result unless used appropriately and carefully. Here’s a link that might be helpful.
https://www.mayoclinic.org/diseases-conditions/erectile-dysfunction/care-at-mayo-clinic/mac-20355786

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If you want a good range of experiences with an AUS check the discussion here titled: "Can Someone help me about life after AUS 800 implant?" Posted by rodneyverrill.
I wish you and your wife all the blessings that can be. I lost my wife and sweetheart of 53-years to Covid (and no immune system due to a 20-year struggle with MS) a little over 2-years ago. My RALP for early but aggressive PC had to happen 2-weeks after she passed. That didn't help. Both recoveries take time - way more than I expected or realized.
You've gotten this far and you're able to ask cogent and meaningful questions. You're tough and thoughtful, keep it up and God Speed to you both.
GranPun

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