Incontinence After Prostatectomy Surgery

I was given a 6 month Lupron shot December 30th. Hot flashes, big reduction in libido, fatigue and shrinkage of testicles. Not much weight gain. I'm still having some hot flashes over 8 months later and fatigue. But my balls have mostly grown back LOL. And interest in sex is coming back even though I can't do anything.

But if it helps keep the cancer away it's worth it.
 
Thanks for the info, I may be facing the same treatments in the near future. BTW...Did your Doctor mention Firmagon (Degarelix)? It's a similar ADT (Androgen Deprivation Therapy) medication but from what I've read has slightly better results with lowered side effects.
 
@paddle53
I started taking firmagon shot when I was diagnosed with GL9. Had surgery for RP in April. In July I started IGRT treatment for salvage radiation of the seminal vesicles.
I just finished that treatment on Sept 1.
Pray for good results. Doing overall pretty good.
 
Looks like this thread is falling off a bit lately, but I wanted to share an update for those who may be interested.

Had imaging ( bone scan, & 2 - CT Scans ) in early January, all came back as things are stable. But, my PSA has risen again. It was 3.0 in early December and is now 6.8. So I'm confused as to why the imaging doesn't show anything new. I've done a ton of reading and watching videos about the PSMA-Pet Scan, stating that it can pinpoint exact cancer locations way better than the Bone or CT scans, but when I mentioned it to my oncologist back in December he said I would not be a candidate and I can't remember why. SO I'm pushing him to re-think that option.

He is now suggesting doing radiation in the only area I have any pain ( upper left iliac crest ), and when I get up from a chair too fast it fells like I got hit with a hammer. So maybe the intensity of that pain is consistent with the rising PSA, I just don't know. The other option he gave me is Radium-223, which is an injection into the blood stream that attacks cancer cells and hopefully kills them. One treatment in nuclear medicine every 30 days for 6 months. The drug is called Xofigo, but to me it sounds like a last ditch effort to extend life. I'd like to think I'm not at that point yet. Link below.


If anyone has any experience with this I'd sure like to here about it.

Best wishes to all.
 
I continue to have incontinence problem after RP surgery. I had to have salvage radiation after surgery. The dr said it would be a set back with the incontinence.
I’m happy that the cancer is out of me and my psa is 0.01.
 
Here's a long overdue update but I think pertinent to this discussion...
Had RP Surgery July 2021, pre-surgery PSA of 15.6, post surgery PSA 6.8. Due to the high post PSA I was put on Androgen Deprivation Therapy (ADT) in October thus allowing three months of post-surgery healing. My ADT consists of two meds, Orgovyx (Relugolix) and Xtandi (Enzalutamide). One thing to be aware of is these two meds are extremely expensive so check on your insurance before signing up for these. This therapy generally lasts about two years and depends on there being any remaining cells which may have become castrate-resistant prostate cancer (CRPC). At that point other more serious treatments such as chemotherapy would have to be started.

Orgovyx (1 pill taken once a day) is used to virtually eliminate testosterone production from the testicles. I can say it works very well and my "T" level dropped from 575 to a below castrate level (i.e.<50) within a few days.

Xtandi(4 pills taken once a day) is used as an Androgen Receptor Blocker and keeps any remaining cancer cells from being able to accept even the small amounts of testosterone remaining, that being the small amount still being produce by the adrenal glands.

The combination of these two medications essentially "starves/kills" some of the remaining cancer cells and puts the rest into remission. After being on this therapy for six weeks my PSA was 0.04 which is considered "undetectable" and my "T" level remained low at 24.

The side effects have been a lot of hot flashes, not so noticeable at daytime, but enough to wake me up several times at night, which makes it difficult for me to get a really good quality sleep. Add to that zero libido, but given that all nerves were removed with the prostate that is, unfortunately, kind of a non-issue now. There has been some (30%) testicle shrinkage and some minor weight gain. All in all not so bad as my energy levels and moods have not been affected at all.

My incontinence level has really improved and I am now using one Male Guard pad a day which is generally considered "continent" in most Urology circles. I will need to have a two month course of Salvage Radiation Therapy and the start of that is now up to me. The radiation will permanently "freeze" my level of incontinence once I start it so once I am "happy" with what I have I will start. The only limiting factor is I have to start the radiation not more than nine months after surgery.

One final bit of good news is that in December the LU-177-PSMA cancer-killing treatment has been approved by the FDA. It's so new that it's not readily available yet but it is a promising post-ADT treatment. From what I understand not quite a silver bullet but still a significant advancement.
 
I thought I would do a follow up from a year ago
It’s been 21 months since my Prostatectomy, but in recent months my continence has gone backwards. Having been almost dry I now use two pads a day.
Only one person to blame and that’s me for not continuing with me Kegel exercises, I though that after 15 months or so they would work by themselves. Well, it appears that is not the case!
So 3 weeks ago I bought a book by an Aussie physio Craig Allingham who specialises in prostate recovery, what a great little book. So, I have been following his recommendations on Kegel exercise and after three weeks there is a significant improvement and am back to one pad a day and hoping to get back to where I was in a few more weeks.
So I guess then Kegel exercises are for life! In a recent follow up with the Urologist we talked about the sling etc but his comment was that my leakage was so low at the time that surgery wouldn’t improve it, in fact it may get worse and its not a comfortable operation. I did talk to someone who had a sling and still wore a pad due to small leakage. Plus it wasn’t something I would want to go through. So at the end of the day I’ll just suck it up and Kegel forever and be thankful I’m still cancer free.
Cheers from a slightly damp Kiwi
 
Just joined this forum as I was looking for some perspective. I am 50 year old just had RARP with nerve sparing on Aug 16th, 2023, foley removed 2 weeks after. I am still early days but was getting frustrated with my progress. I did physical therapy ahead of the surgery focusing on the pelvic floor exercises. Today I still go through 8 pads per day and wear a diaper as I have an occasional overflow. Did notice Caffeine and alcohol are to be avoided. Fortunately been seeing progress at night and while sitting. Still have a constant drip. Walking daily a couple of miles.

Nice to see I am not abnormal and hopefully will see the progress most are seeing.
 
PLNE,

Hang in there! I had my robotic prostatectomy almost 3.5 years ago. First two or three months were not fun and it was easy to get discouraged. I had radiation and hormone therapy after my surgery which didn't help but after about 6 months and especially after a year I only wear the lightest male shield available and probably don't need to but it's cheap peace of mod. And best of all my PSA remains almost undetectable!
 
PLNE said:
Just joined this forum as I was looking for some perspective. I am 50 year old just had RARP with nerve sparing on Aug 16th, 2023, foley removed 2 weeks after. I am still early days but was getting frustrated with my progress. I did physical therapy ahead of the surgery focusing on the pelvic floor exercises. Today I still go through 8 pads per day and wear a diaper as I have an occasional overflow. Did notice Caffeine and alcohol are to be avoided. Fortunately been seeing progress at night and while sitting. Still have a constant drip. Walking daily a couple of miles.

Nice to see I am not abnormal and hopefully will see the progress most are seeing.

No you are not abnormal! You need to give that a bit more time. I had mine out a year ago and the leaking was terrible, like WTF terrible. Weekley it got better and today, a year on it's 99% better. No pads. I'm not giving up coffee either. I ordered a devise that does Kegels for me so I am lookinhg forward to trying it. The ED is even improving massively. Hang in there man, you'll nail it.
 
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