Gut check , looking for real world po... - Advanced Prostate...

Advanced Prostate Cancer
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Gut check , looking for real world post RP side effect testimonials

sammamish
sammamish

Have the ATM germ cell gene defect with Gleason 9 DX(so thinking BT/radiation may not be a good choice). Trying to wrap my brain around RP side effects. So ED is pretty much a given, but I am wondering about urinary incontinence. I have read its as high as 10% long term. Was wondering if any body has any info/personal experience on this. I think I could cope with one hit (permanent ED, ugh)but not so sure if I could handle two(permanent urinary incontinence.) Any input here greatly appreciated.

As an aside, has any one had the The Retzius-sparing RP approach? Any input greatly appreciated.

14 Replies
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Similar to what I said in my post about chemo ... diet and exercise are critical to managing RP side effects. The fitter and stronger you are before surgery the better you will handle it.

Continence. Start pelvic floor exercises NOW. Build up your strength before you start. After surgery, start again as soon as soon as catheter is out. And remember, these go on forever. I had RP 3.5 years ago, I still do pelvic floor exercises daily. I find plenty of time to do them when driving the car.

Worst case, there are artificial spincters to treat incontinence. A colleague of mine had RP 10 years ago, had total incontinence and had an artificial sphincter inserted shortly after RP. It was pretty useless and he suffered constant leakage. But like all things, technology is improving and he had a new upgraded sphincter inserted this year. No more leaks and he is delighted.

ED. This is a tricky one and highly variable. My surgeon was able to spare nerves on one side only. But I was still able to get an erection after RP with the aid of viagra (RT and ADT have since ruined me completely). I tried injections after RT, they did work (before ADT) but the cure was almost worse than the ED! Ymmv.

Good luck and keep fighting.

sammamish
sammamish
in reply to Hazard

So is it like a constant urge to go...just manage it by pelvic muscle strain?

I am trying to imagine this.

I had RP two and a half months ago. I agree with starting Kegel before surgery and as soon as the surgeon allows post surgery. I still have some incontinence, but it has been getting better with time. My discharge of 400g has trickled to 5g a day, so I can do normal activities with no pads, and only for strenuous exercise I use a light pad.

Since I’m on Zytiga as well, ED was a forgone conclusion. Viagra/Cialis effect has been weaning down over time. I’ve been using the injection and they work. I know it comes with a barbaric imagery , but it does work and after a while you do get used to it.

Good luck

sammamish
sammamish
in reply to snoraste

How long did you wait after Dx to get RP? I am really struggling over this.

snoraste
snoraste
in reply to sammamish

My surgeon recommended I wait for a couple of months while on ADT and Zytiga for the prostate to shrink. I took it out 6 months after diagnosis, but could be done it in 5 as well.

sammamish
sammamish
in reply to snoraste

Nerve sparing? that option is apparently off the table for me.

snoraste
snoraste
in reply to sammamish

For stage 4, the ED is a foregone conclusion - with or without nerve sparing, with or without surgery. You need to have a fresh new perspective. You can still have a good sexual life, it’s just different now.

Good Thursday Morning sammamish,

I have been in this battle for almost six years (please see bio for complete treatment history).

After one Guardant360 liquid biopsy, we discovered an ATM defect, which allowed Dr. Snuffy Myers to prescribe Lynparza, a PARP inhibitor. Lynparza worked for about 9 months.

Best wishes. Never Give In.

Mark, Atlanta

sammamish
sammamish
in reply to vandy69

Vandy, so the ATM defect was a germ cell defect(all cells in your body_)?

vandy69
vandy69
in reply to sammamish

No, only prostate cancer cells,

Mark, Atlanta

to sammamish: As for as ED is concerned consider it as an "End to Dicking". Incontinence, do your Kegel exercises now and continue after RP. My experience was that I leaked for about 4 weeks (2 Depends a day) and eventually tapered off to a pad a day and then to none a day. However watch your sneezes cause you'll squirt. Always keep a couple of pads handy.

p.s. Where are you located and where is the procedure being performed?

Good Luck and Good Health.

j-o-h-n Thursday 07/12/2018 4:17 PM EDT

sammamish
sammamish
in reply to j-o-h-n

Seattle area

Do Kegals prior and after. I also did bio-feedback therapy, it was like an alien probe experience, but it did get be 100% in control with 8 weeks.

The ED, is tricky, had nerve sparing. Out of the gates I could have an orgasm, but without the erection, that started later. I just wrapped up SRT and 6 months of ADT, and can perform a bit with Cialis. It takes patience, which I don't have LOL, but it is what it is.

Hi Sammamish, I had the surgery right out of the gate. 1 month after the biopsy I went under the knife. 6 weeks later I had radiation for 7 weeks and started hormone therapy. Nothing worked down below my waist. Do your Kegel exercises every opportunity your get to do them. It took me 2 months to get some control and about 2 years to get complete control. You will leak i.e.: running, lifting heavy objects, sneezing, waiting too long. Best advice I got was to buy new born baby diapers small. Folding the side plastics in keep it from leaking, they cup real nice down there and stay in place, they are mad for babies so are really soft, and they hold a lot of liquid.

Hope this helps.

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