Journey to sling - 2

Bro. Arch recently posted about his sling journey.  Thought I woud do the same.  Maybe it will help someone out there considering it.

04-11:  Da Vinci RP, University of Texas SW Medical Center, Dallas.

Cath removed on day 10.  Immediately, 8 pads/day.

3 months - 4 pads/day.

9 months - 2 pads/day

12 months - 1-2 pads/day, but always leak when physical.  When I would walk for 30-45 minutes, my bladder would empty. Same for any activity that required me to stand for any length of time (cocktail party).  Also any mention of S-E-X caused leaks. 

Talked with my uro - he said that healing had generally ended at 12 months, but that they wouldn't talk about alternatives until 18 months.

18 months - Talked with uro.  Decided to do intensive bio-feedback.  Interesting procedure - probe in rectum and others attached to stomach.  Did kegels, and could watch the results on the computer screen.  I learned that I wasn't doing them hard enough.  Also was taught to use a tension band (spread legs) and a ball (squeeze knees).  For 8 weeks I did 10 sets of 10 kegels daily, varying the type.  I improved for day to day living, but continued to leak when physical.  Met with surgeon.

20 months - Went through Uro-dynamics and cystoscope.  This involved probes in rectum, and catheter.  They fill your bladder and measure pressure.  They want to know at what point do you leak, and can you empty your bladder.  The cys. just lets the doc determine that there is no injury up to the bladder neck, and that you have muscle control to stop/start the flow.  I passed the tests.

22 months - February 6 - Had AMS Advance sling installed.  Surgery was a piece of cake.  Was only in the OR a little over an hour, back to recovery, and left for home by 1:30.  First day or so pain was from the wishbone effect.  Evidently they spread your legs WIDE.  After day 1, began to have some pain from incisions.  On day 2 I removed my own catheter.  After 6 hours, no pee.  Had to go back and get a new cath for another 4 days.  I was bone dry for the 5-6 hours with no cath.  I will remove it again on Monday, and hope to pee inside of 4-5 hours.  If not, recath again.  Pain is about a 3 on a 10 scale.  I'm fine when horizontal, but standing or sitting hurts after a while.  I have 2 small pencil holes on either side of testicles, and a 2 inch incision (vertical) in perineum.  Lots of swelling and bruising.

The plan was for Wednesday surgery, and back to work on Monday.  Can drive on Monday.  Though for me, I'll miss one extra day (Monday) for a redo on the cath.  I don't want to be at work, when I mostly just want to relearn how to pee.  Major physical restrictions for 6 weeks.

So far, not bad. Will post more as I progress.

PS - Still -0- Club, and ED.  And thanks to Arch for his prior posts.

Curious George, thank you for sharing your story, and wishing you continued success in your long journey.

Your story has great value for those who need/choose to pursue a sling solution, and these men were your likely target audience.

But your story is also valuable to those men with very small amounts of low-risk prostate cancer who might be considering aggressive (over-)treatments.  This was, of course, not the case with you, but all of your follow-up issues appear (from what you've posted) to be completely independent of your cancer control, and totally related to side effects from the treatment.  It is, specifically, what is referred to as the potential "harms" of treatment.

You probably did not expect to have such extensive urinary and erectile function issues when you underwent your PC treatment 2 years ago.

What advice would you give to HW newcomers who have a tiny, microscopic amount of low-risk PC and would be outstanding candidates for Active Surveillance?

With my stats, I would follow the same course.

However, I would advise anyone with low Gleasons, or few "hits" on the biopsy, to do nothing.

A close friend (age 62) recently reported 1 of 12 with biopsy, and a Gleason 6.  I advised hime to do nothing.  He elected radiation (42 treatments), and is suffering from numerous side effects.

 

Curious George, I agree with your position. If my biopsy results had been just a bit better than they were, I would have chosen active surveillance instead of surgery. Even my post-surgery path report showed that the
Gleason score (3+4) wasn't quite as bad (4+3) as the biopsy indicated. Now, because of the surgery, I'm stuck with severe incontinence and total ED. I may have had the same problems with radiation but not as quickly. So far, I'm lucky in that my PSA tests are coming back "undetectable" but unlucky in that I'm one of the unfortunate ones who have to deal with severe side effects, possibly permanently, from the surgery. So, I would also recommend to any man with a diagnosis of Gleason 6 or less to chose AS instead of surgery or radiation. I thought I might be among the lucky ones who quickly recovered from incontinence and ED after the surgery but that turned out not to be the case. I am alive but with a diminished quality of life.

Those of us who are in that 5% would likely agree that AS is a better option than rushing to surgery or radiation if you have a low Gleason.. I discovered healing well after surgery or knowing what I know now from this forum I would have done AS.
That said, I would also encourage anyone who has ED and/or incontenance that your quality of life will be just fine if you have the right attitude and utilize tHe treatment options available. It took sling surgery and then AUS surgery to fix my leaking. ED is fine using injections. My life is better than ever and Thank God we have the Technology to make this happen. Being in the zero club is the best outcome to wish for even if you have to deal witH some issues.

Do your homework, make your choices and don't look back.

thanks for the latest update..

from what you write, perhaps you have made that turn for the good, hope it stays that direction for you

I have been dealing with bladder spasms for over 4 years now, have had literally thousands of them, but my situation is entirely different than yours, but I share you pain. even one is too much in my opinion

good luck to you ahead

david

Wow, George. You've really been through the mill with this adventure.

Glad to hear you're feeling better and that the sling is working for you. It's great to be dry, ain't it? I forgot how itchy and uncomfortable it is when the hair starts growing back, but it doesn't last long.

Be sure to go reeeeeaaal easy for the next six weeks. You sure don't want to mess things up now. Hang in there; you'll be glad you did this.

Jonathan