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karitoki
Posts: 4
Joined: May 2016

Greetings!

I'm 56 years old and have been tracking my PSA for the past few years. It went from 4, to 6, to 8 over the past three years so I decided I couldn't put it off anymore. Also, my father had had PC so I felt it was just a matter of time for me. Anyway, I went in for a "pokey-feely" with a family doc and he only noted that my prostate was big, not hard or lumpy. He referred me to a urologist that he recommended. Same thing with him, nothing too unusual with the digital, but he scheduled a biopsy to be sure. What a pleasure that was! It felt like someone was snapping an elastic band against the inside of my rectum! Well, I survived, and three days later got the dreaded phone call. Five of six cores on one side were 3/5, the other lobe was clean. My wife and I talked and prayed about the decision after meeting to discuss my options. On March 31st I had a radical retropubic prostatectomy. Surgery was longer than usual because the gland was a lot bigger than normal and they had to get fancy with the bladder sphincter. I was in the hospital two days and had the catheter for the usual two weeks. The evening of the day I had the catheter removed I was in the ER with severe urinary retention Yell. Luckily my doc was on call and met me there. He tried to re-catheterize me four times with no luck. He ended up using an irrigation syringe to drain my bladder through my abdomen. I stayed in the hospital that night and the next morning my doc scoped me and found a combination of stapels and scare tissue was causing the blockage. To make a long story short: the good news is the cancer hadn't gotten outside the gland and I was clean as a whistle with good margins. The bad news is I've had to be re-catheterized a second time due to blockage after having to
temporarily catheterize myself three times (this was after the second surgery). I think a lot of the problems were related to urethra swelling or adhesion. This past weekend has been the first time since this ordeal started that I've been able to urinate without pain or blockage, but now I have a new "challenge"; If I'm vertical, I'm leaking. I go through about 8-10 pads a day. I've been using "Manhood" pads by Coloplast which are awesome, but they're also $1.50 a shot. I'm hoping things will normalize, but I'm getting kind of freaked out at the number of people I've read about that are dealing with a similar leakage that has become "Long-term". Thanks in advance for your support.

Josephg
Posts: 168
Joined: Jan 2013

Hi Karitoki,

Welcome to the board.  You will find lots of fantastic people here who will make every attempt to answer any PCa-related questions or concerns that you may have.  In my opinion, your surgery is very recent in terms of regaining urinary continence, so I would not panic yet.  I assume that you are performing Kegel exercises to strengthen your sphincter muscle, as every PCA patient gets that recommendation.  I would recommend that you perform those exercises with a very robust passion, and very often, and for the indefinite future.  If you are going to regain urinary continence, a strong sphincter muscle is an absolute must.

Regaining urinary continence is often a slow process, taking up to a year+.  Everybody's experience can be different, though, so some folks regain urinary continence in as little time as a few months, and some, like me, never do.  Where you had complications in the urethra area, there is a chance that this will lengthen the time required for you to regain urinary continence, but maybe not, depending how close the complications were to the sphincter muscle.

Also, did you have any of the nerve clusters on either side of the prostate removed during the surgery?  From what you described regarding margins and no PCa found outside of the prostate, I suspect that the nerve clusters were not removed and remain intact, and that is good news for the odds of regaining urinary continence and future sexual activity.

My recommendation for now, based upon your 8-10 pads per day of leakage, buy yourself a box of men's Depends underwear.  You can buy a box of 42 at Walmart for under $20.  I know that there is a stigma to wearing Depends, as I was stigmatized for a while, but you will get over it and have the peace of mind that you won't be leaking through your clothes and onto furniture, or running to the restroom to change pads, at the most inconvenient times.

If, it turns out that you do not regain urinary continence in a year's time, then you may be considered to be permanently incontinent, but there are also options for dealing with that and maintaining a 'normal' lifestyle.  I can refer you to sets of comprehensive postings that I made here in the forum on that topic and my experiences, IF that becomes necessary.  While none of us here in the forum are medical professionals, my lay opinion is that it is way too early to be thinking about permanent incontinence, and that you have a very good chance of regaining urinary continence in time.  You just need to be patient and perform your Kegel exercises very thoroughly and consistently.

Again, welcome to the forum, and ask any questions that you may have.  I'm sure that other folks will also comment in your posting and offer you their experiences and perspective.

I wish you good luck on your journey.

karitoki
Posts: 4
Joined: May 2016

Thank you so much for your encouraging reply! I won't be able to tell my wife about your response because she has been telling me basically the same thing! I won't hear the end of it!

The doctor did not mention having to remove any nerve bundles. I never thought of asking him, and I would hope he would have told me if he had removed anything that signifigant. I'll ask him during our next visit.

How long do the Depends underwear last between changes? Unless they are good for eight hours of use, I'd be in a bad situation having to change one during the work day. Money Mouth

I had to chuckle about the klegel advice; I started doing them a lot last week; Monday, I couldn't pee my urethra was so swollen! I had do catheterize myself. I stopped the klegels and iced the area and things returned to normal the next day. That said, I'm back at it doing them multiple times a day.

 

Again, thanks for the support.

Rick

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I suggest that you ask your doctor for a prescription for physical therapy. Many times kegels are not done correctly, so the need for professional Direction.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Sorry to hear about the incontinence. I hope the situation improves and that you find a way for controlling the linkage. I cannot add much to the above comment from Josephg, but I think your case being at high risk for permanent incontinence. 
Those clips causing the obstruction suggest that at surgery they had problems/difficulties in the reattachment of the urethra to the bladder (cause of the enlarged gland). The continuous need of catheterizing may have impaired the work of the tiny muscles now not functioning as one would expect.

Using pads or fancy depends will not resolve the issue. You have to be active with sort of rehabilitation. Kegels may be the best way to regain to normalcy. You can do it by yourself or use apparatus proper to stimulate local contractions. Do you manage to stop or lower urine flow when urinating? Such feeling would mean that your way in doing kegels is good.

Congratulations on the pathologist's report. Negative extra capsular/prostatic extensions is a positive step in the path to cure. I wonder about the Gleason rate described at the report post op.

Best wishes for complete recovery.

VGama

karitoki
Posts: 4
Joined: May 2016

Thanks for the reply,

The doctor said the clamps (which were barely visible!) were the type he uses on blood vessels, and that they somehow had worked their way into the area near the sphincter. I talked to the doctor (his parter) who was accompanying him during the surgery and he said they did have to do the "tennis racquet" stitch on the sphincter to match up the opening with the urethra.

Yes, I'm able to stop urnine flow. If I've been sitting down for a while after drinking fluid, I usually have a fairly full bladder. I have some leakage on the way to the bathroom, but when I get there I'm able to start and stop without a problem. It's mostly a constant dribble when I'm standing, and a squirt when I squat or stand up.

 

Thanks again,

 

Rick

rockylll's picture
rockylll
Posts: 1
Joined: Jun 2016

hi anyone else have a shrinkage of their manhood after tratment? my adiation ended 3 months ago..was hoping for a bit of back to normalas size does matter when urinating,you hafto get outside the pants or there is no use finding a bathroom.any help is welcomed

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Rockylll 

Best that you start a new thread so we can give attention to your questions, and focus on answering the questions of the original poster at this thread

karitoki
Posts: 4
Joined: May 2016

I met with my doctor Friday and he offered the option of physical therapy. It would involve using bio-feedback. He also mentioned the bladder sphincter pump, but only as a last resort. As we were leaving, he said I might want to try taking sudafed to help with the leakage. Heck, that sounded easy enough. Well, I stopped by the local Safeway and talked to a very nice pharmacist who when I explained my situation seemed to know exactly what I was talking about. After giving them all my personal information except the name of my first born, I had my 24 hour dose of Sudafed in hand. Well dip me in dog crap! This stuff actually helped! I've gone from 10 pads Friday to only about 5-6 pads today! And I was on my feet a lot today. Very encouraging!

This is a great forum. Thanks for your support and willingness to share your experience. Best regards to everyone!

Rick

bloomin00
Posts: 1
Joined: Jun 2016

I was given a 6 month shot of Lupron ( which lasted 12 months!) by VA, the side effects were horrible!.  My PSA was 7.8.  I then went to U of Miami and had every test known done with no sign of cancer anywhere.  I have been off Lupron for a year and my prostate cance has returned with vengance...PSA 62 and it has spread .  My NEW oncologist has given me a 3 month shot  and I feel "bad" but no where as "bad as I did with 6 ( or 12)  month shot.  Is it possible that the 6 month shot wad a worse side effect on me than the 3 month shot...why not just get a 1 month shot every month???  The VA gave me the shot in the arm and the Oncologist at Cleveland clinic gave me the shot in butt...could that mean anything?  Hoping someone might have some info that would help!

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