I just moved this topic from the Site Help Forum. Hopefully, someone has some advice.

Jan

 We are seriously considering radiation therapy. My husband has so many adhesions that surgery does not appear to be possible. We are talking to UCLA to Dr. Steinberg right now. He seems to think that by doing the SBRT which is localized radiation that may be a more precise target  that will not damage the pouch.  On Monday we are going to see a doctor at Cedar Sinai in the Urilogical surgery dept For a second opinion. BTW his jpouch surgeon is very much opposed to him getting the RT. 

I was so interested to read this today as my husband has just had his prostate removed also and I can relate to your concern - I hope it went well for your husband ???

 Prior to the surgery, the Oncologist said he wouldn't do radiotherapy - so he had the surgery but there are some Gleason 9 cells still about and the Urologist Professor suggested Radiotherapy !!!!! As the person who has travelled this road with him through the 1991 proctocolectomy and J Pouch, spinal fusion, hip and knee replacement, 2 shoulder surgeries, 2 carpel tunnel operations, Ross River Fever, Polymyalgia Rheumatica and numerous other procedures, I am VERY worried about him having the radiotherapy - does anyone else have any advice please - many thanks in advance x

Wondering if the surgeon you used to remove the prostate was familiar with the J Pouch and had he removed prostates previously from other J Pouch patients?  My husband needs his out and the surgeon we saw today wasn’t even familiar with the J Pouch and wasn’t sure he could do the robotic surgery because of it.  Would like to know also if you had robotic surgery?  Any info would help!

We ended up not doing the surgery because of the adhesions. He had Rad Therapy (SBRT) at UCLA in May 2016, which worked well until 3 months ago when the PSA started to climb. We are on a 3 month recall for blood tests. The good news is that the RT initially worked well and did NOT affect the j-pouch. Of course the PSA going up is game changer. We shall see in two short weeks! 

My apologies for the late reply all - I hope you're all doing as well as you can - and that includes your partners and families . . .

My husband had the surgery - they couldn't do the robot due to all the adhesions from his pouch op as well as his spinal fusion. The Professor said it would have taken hours to get through all those adhesions . . . so surgery went well apart from a blood clot that got stuck in the catheter and had him in great until till resolved . . .

We saw the Prof post op and he was very happy with the result - the PSA had gone from 42.9 to o.03 - amazing. His incontinence has been a problem in that he thinks he should be better than he is but all the Drs etc tell him he is doing well - he's 75 and as they say it would be a quicker recovery if he was 55 !!!

We cancelled all plans to travel to see family overseas and his was quite depressed at times ( naturally ) but is now ( 5 months post op ) getting out and about more - that was a BIG problem to start with = because of the incontinence he became quite anti social, even not wanting to visit the kids - but last night we went to our Antique Machinery Club meeting and all was well . . .

There are hiccups along the way with everything I suppose ( there have been accidents with both wees and poops ) but we do the best we can and I try to remind him gently that he is doing soooo well compared to many others. Silly bugger is also getting up the ladder again !!!!!!!!!!!!!!!!!!!!!!!! so I take a photo of him up there as he has both a hip and knee replacement and the Dr said no ladders. So when we go to him I show him the photos - I have suggested to my husband who usually goes up the ladder when I go out, to put his mobile in his pocket so he can call his own ambulance - silly old man lol !!!

Wishing you al, the very best - life hasn't turned out as planned for so many of us but at least we have a life I say !

xoxoxox to you all

PS Yes, our Professor was very aware of a J pouch, we have been extremely lucky

Great Info...thank you!

so he kept his pouch

My husband received his J-Pouch from the Mayo Clinic, so we decided that was the best thing was for us to go back there.  We talked to the surgeon who does many prostate removals on patients with the JPouch and he said there is no way of knowing if the removal is possible without performing tests,like MRI, etc.  So we head out there beginning of September for these tests and for recommendation from the pros!

Wishing you all the very best x

Paul posted:

My husband received his J-Pouch from the Mayo Clinic, so we decided that was the best thing was for us to go back there.  We talked to the surgeon who does many prostate removals on patients with the JPouch and he said there is no way of knowing if the removal is possible without performing tests,like MRI, etc.  So we head out there beginning of September for these tests and for recommendation from the pros!

 

Hi Paul,  thank you for posting this info.  Glad you have a surgeon to talk to familiar with prostatectomy and Jpouch.  I had a colectomy in 2001 and living with a Jpouch since.  Diagnosed in 2015 with prostate cancer and have been on active surveillance since.  PSA has been steadily increasing but nothing drastic.  Last prostate biopsy was 4, Gleason 6's and one 7(3+4).  My urologist isn't overly alarmed given the slow rate of growth.  He arranged for a consult with a radiation oncologist and her bottom line summary was leaning toward the surgery and not radiation.  To risky with potential radiation damage to the Jpouch.   With all of this said, I'm very interested in knowing who your surgeon is at the Mayo Clinic.  My urologist has done many prostatectomies but not with a Jpouch.  Perhaps he could consult with your surgeon.  

Thank you very much for your help.

Steve

Steve,

We take Paul this week to the Mayo Clinic.  We will let you know how it goes.  The doctor’s name Dr. Erik Castle and he is at the Mayo Clinic in Scottsdale, AZ.  

We’ll let you know!

Debby

Excellent news!