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Gleason7(3+4) - treatment options recommendation

Prostate Cancer | Last Active: 56 minutes ago | Replies (302)

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Profile picture for fritzo @fritzo

@johnnyz I'll just reply on sexual function and incontinence prep before treatment.

First, everyone is different. The surgeon may have to take more nerves to get good margins, depending on your test results/pathology. Even with perfect nerve sparing, your response to a perfect treatment will be different from everyone else.

I had nerve sparing surgery 3 1/2 months ago. My continence and sexual function are ahead of schedule. I am feeling very fortunate. It's still a lot to deal with, but I know it could be even more challenging, so I'm grateful to make the progress I have so far. Still a ways to go.

Here is what I'd suggest:

• Sign up for Pelvic Floor therapist before treatment. Bladder retraining, advancing your kegel program and giving you additional exercises at the right time specifically for you. This is so helpful!

My incontinence isn't as bad as some others at this point in time post surgery, but I can't tell you how helpful it is to have a trained specialist helping you progress. I was a doubter because I'm not that bad. But, yes, it's a huge help.

• Get started on kegels Start doing kegels NOW before treatment. Don't wait. I use the Easy Kegel app, paid the $3 (worth it) and set up alarms and my own schedule. Make sure to learn how to trigger the right muscle! (that's where the pelvic floor therapist can help as well They can tell you if you are doing it right)

• Sign up for a Sexual Function therapist before surgery so that you can prep and then get in to see the specialist before too long after surgery.

For sexual function,

• Start a PDE5 inhibitor before treatment. I started taking Tadalafil prior to surgery. Many centers actually have you do this. My surgeon didn't prescribe it (the research does not say this has benefit), but I pushed ahead and asked my primary care doc to write me a prescription and he did that in a heartbeat. Super glad I did this.

I'll say this. I figured out how to overcome some initial muscle ache side effects from Tadalifil and have had no problems since (switched to taking it in the morning rather than at night). I also had a glorious stretch of being as functional as a teenage guy again. So, have some big fun before the big day.

•Second. I got a penis pump to see how to use it. It's so much easier to learn when you are fully functional. I ordered a Vacurect (not cheap, but easy to use, FDA approved and designed by a former PCa patient). After surgery and the catheter is removed, it's time to do pump therapy. (lots of posts out there on this and other options on pumps). You do this because post treatment, you no longer get erections. The pump action helps keep tissue from turning into scar tissue. It's a use it or lose it situation. Until you can get erections again, you need something to help.

• Restorex post surgery: I was a doubter. I never thought I would do this, even after all my pre-surgery homework. My sexual function doctor said I was a good candidate for a Restorex trial. It's stupid expensive, but I got the unit for free as part of being in the trial. I've been doing that for almost two months now. It's basically a penis stretcher. Why would you do this to yourself? Well, surgery often leads to a much shorter penis that can affect more than just your ego.

I was a doubter, but I can say this 100 percent. It works. I tried the pump post Restorex treatment and there was a big difference. I am actually bigger now, which was not my actual goal. It took a couple of months of doing the stretch ( 30 minutes a day) for any big noticeable change, but all of sudden, there it is.

Also, Before surgery, while you're at it, do some flaccid and erect measurements to know what you are prior to surgery. It's kind of like how big the fish you caught. You want an accurate number, not the fish story.

Good luck with your decision making. The good news is that there are so many treatment options and it is so much better to be on the other side of treatment. Still recovering, but feeling much better.

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Replies to "@johnnyz I'll just reply on sexual function and incontinence prep before treatment. First, everyone is different...."

@fritzo You have a good story... and you proactively did what you needed prior to and post surgery. That is much of the same mindset as myself. I am leaning towards the robot surgery and we have a well know hospital 45 mins. away that is known as being one of the best. That helps. I am 68 and do plan on spending lots of time before surgery enjoying frequent intimate time. Thanks also for the tips on PDE5 inhibitors, vacuum pump, therapist treatments...Basically, I will do everything possible to minimize the impacts while hoping to become cancer free which the doctor stated that I should be a "cured" patient following treatment...
I was not aware of the Da Vinci one incision vs the typical 5. How did that go for you?