Bladder ostomey bladder neck cancer after SP

[Kimmilemo]

My husband is in the hospital now just put in back drains, since Selvedge prostatectomy aug 2 he has been in and out of hospital so many times with clogged up catheters not working , bladder not working when he doesn’t have a catheter, and now is loosing functions of his kidneys.

His urology surgeon said now we need to make some choices

1) do nothing and you will loose kidneys

2) put these stints and kidney drains in then do a bladder ostomey or

3) take a muscle from his inside thigh, do studies and try to locate the leak which he thinks is around the urethra and bladder he connected and try and make it where he can Pee out his penis but probably would be incontinent like he is and with having prior radiation 10 years ago his Dr. said it would probably be a failure and end up with lots of complications like he’s having now.

He’s leaning toward the bladder ostomey. Since his cancer is around the bladder neck still I keep asking can’t they do hormone therapy to help with retention and help fix him up , they keep saying No.

Mel asked if I could get on here and ask my buddies for their knowledge and 2nd opinion suggestions.

Thank you in advance

[Tall_Allen]

Hormone therapy won't help because his problems are mostly caused by the surgery, not the cancer.

[Kimmilemo in reply to Tall_Allen]

Should we get a second opinion or do you think based on what you know if this is the choices available at him.

[Tall_Allen in reply to Kimmilemo]

Sorry - I don't know anything about this subject, but a second opinion can't hurt. I would think, from a nephrologist.

[TWTJr]

I can only tell you what worked for me. I had similar situation, with surgical anastamosis of the urethra and bladder neck not healing, and constantly leaking, even with foley catheter. This was likely related to prior radiation which reduces blood supply and inhibits surgical healing. I demanded hyperbaric oxygen treatment which was completed, with foley catheter was in place. I had daily treatments for 3 weeks, and the anastamosis finally healed. However, expect recurrent stricture formation and the necessity of urethral dilatation, which you can learn and do yourself. I have been on self dilatation for 18 years. Over that period I have had about 4 instances where the stricture got so tight that a urologist was needed to open and dilate under general anesthesia. Not sure if this is helpful, but good luck. Appropriate catheters and needed materials can be purchased online from Allegro Medical.

[Kimmilemo in reply to TWTJr]

This is very helpful, his oncologist suggested but his urology surgeon said he didn’t think it would work. So do you think we should try that before getting a bladder ostomey? They say his kidneys are not functioning well and the left is worse than the right. We already had renal failure last month from the catheter clogging then they took the catheter out and he was going through lots of pads but they said after a cat scan he had lots of retention still then ended up in the emergency room again from not being able to pee and that was with no catheter. Ugh ... I really think a bladder ostomey is not going to add to quality of life either and permanent.

[Kimmilemo in reply to TWTJr]

Also did you have bladder neck cancer

[TWTJr in reply to Kimmilemo]

I did not have involvement of the bladder neck, which is a quite relevant fact. It may account for lack of improvement or worsening of bladder neck obstruction. I cannot provide any specific advice, only my history and treatment. Impairment of renal function is a very relevant issue.

[Hidden]

Dear Kimmilemo, I just saw your post.. Are you at the hospital now.. ? if so.. my wife and I have been in the same exact position.I was in icu 2-15 for one week..my wife slept by my side the entire time.. And she wasn’t my wife at the time. She married me a few weeks later..after we cried like babies .. she said yes.. and has saved my life in every way..Here is the good news that is possible for you, because I had the tubes and a foley for a year , then weened off those with stints .. I did an all out diet and naturalpathic routine costing 30k over two years. No more sugar. Any way.. I hadn’t even been diagnosed yet..With APC. I came out of ICU walked next door to my dam urologist office .Dx #4 t4 agessive . Pc tumors blocked urethra causing kidney failure. Pc on bladder and throughout region. Two lymph nodes lit up. My prostate was giant and blew out with pc . I was then 53. They told me 50/50 chance to survive initial treatments. I got my first firmagon shot and started Rt five days a week for eight weeks.. I won’t lie to you.. the entire time with the tubes I had consistent U T I ‘s and finding comfort was impossible . Sleeping horribly difficult but the only relief.

[Hidden]

Here’s the great news ! A few months after Rt. And now for over three years, I’ve had no -visable signs.. So it is possible .. I say do the Rt and adt as I have . That shrunk all of my tumors and enabled them to remove all tubes and stints.. A true miracle. Not without much effort and total suffering for all concerned.. You have saved your kidneys and avoided failure.. What they suggest has worked for me so far. He will be greatly weakened...I went from 233 muscular to 165 with no strength or stamina.. I’m up to 200 again. just getting through it took everything we had . He will need you greatly.. I’m happy he has you.. It was so much for my wife. She’s 5.2 100 lbs. You must vent your stress thru positive ways so that you don’t go down yourself.. its a hard path .. He has people that he doesn’t even know praying for him. My personal belief is that love and prayers are most necessary to survive this .. He has those and you by his side.. That is what will save him.. Hope you’re out of the hospital very soon.. My thoughts are with him and you in this time of trial.. Together you’ll get through .. Scott

[Kimmilemo in reply to Hidden]

Scott that was beautiful. I’m so happy you have had your bride on this ride with you. I know we all can’t remember each ones stories because they all have so many variables. I have mentioned your story of tubes to him to keep him encouraged prior to him having to get back tubes. Ha

My husband had his first diagnosis 10 years ago with PCA , they treated him with 3 months radiation to the prostrate then two years of Lupron did well with no recurrence for 8 years after the shots. This time SP aug 2nd with signs of bladder neck involvement and positive margins. The oncologist has backed off to let the urologist surgeon to continue getting this kidney/bladder problem fixed.

I keep asking for them to start hormone treatments I feel it will help him out with his issues of leaks etc. but they say it won’t help, it’s not the cancer it’s a combo of radiation issues from the past and a leak from surgery .

Our oncologist suggested hyberbarick treatments but urologist said he didn’t believe that would work either.

Ugh so confused on what to do next.

Husband is out of the hospital as if this afternoon and is on the train bound for home gets in at 12:30 pm.

[Hidden in reply to Kimmilemo]

What a ride? Thank you very much for telling me he’s out.. Thank the heavens..I’d take the onc’s advice and do the hyperbaric.. And whatever else you feel that will help him heal. Those docs should be more careful in what they say.. we hinge our life’s on their words sometime.. they said I’d be gone 6months ago no matter what I did.. Getcdlerp . I’ll bet you’re deprived. He’s going to be so happy to be home.. wow.. keep the faith God bless. Scott..

[Kimmilemo in reply to Hidden]

I’m sure glad they were WRONG about you, you e been a great source of comfort for many of us.

[Hidden in reply to Kimmilemo]

I was so weakened that I needed help to get up and down and just about everything else. Sleep and peace tonight. Thanks for the good news..

[Kimmilemo in reply to Hidden]

Same to you and your wife Scott!