Very interesting! Thank you!
Thank you thank you for this information on the single port procedure.
I have had a bouncing PSA for 10 years.
right before TPC/IPAA surgery my PSA was over 10 and I had a biopsy which was negative.
given that my surgeon has warned me to never to have radiation and my PSA is on the rise again i am very nervous about my prostate health and future.
this is good info to have.
thank you again.
Hi!
Do you know the reason why the surgeon said no radiation? Is it about damaging the pouch? My husband had radiation over 6 years and it did not damage the pouch. They put blockers to prevent it.
Thanks!
My dad’s J-Pouch doctor and another J-Pouch doctor at Columbia VERY sternly demanded us not us radiation because it could cause the pouch to fail. However, the urologists we initially spoke to were petrified at the thought of removing the prostate because of the scaring.
Happy to hear there have been no complications with your husband’s pouch though.
The surgeon told me that radiation would cause the pouch to stiffen and then fail. I did not press for more info given the negative biopsy at the time.
I do not know what the latest thinking there is regarding low dose brachytherapy or other treatment options.
however, I would be terrified to have any additional surgery in the pelvic area.
I have worked very hard to get to the point where I am feeling good on a daily basis.
update: I was informed after I posted this morning that my PSA has returned to normal
i completed 30 days of bactrim to knock out a recurring uti (that gave false high PSA readings).
while I am out of the danger zone for now, I hope this thread continues to get updated since us pouchers will have have some very tough decisions to make should we develop prostate cancer and want to treat it.
Great information here.
thanks to all who have taken time to share their story.
Just as a follow up to my post last spring, I met with the surgeon last summer for a final discharge from his care. The two takeaways:
1. Have a yearly pouchoscopy .
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
If I may add a different opinion on item 2 above:
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
My husband has had two rounds of Radiation; first round of Stereotactic RT in 2016. Cancer came back in 2021. Second round (called salvage RT) was done through Brachytherapy (Sept. 2022). Yes, the pouch sits immediately next to the prostate, but they use a SpaceOAR; it is hydrogel that prevents the pouch from receiving radiation. Our latest PSA showed a drop, so we are hopeful it worked. We also had a full exam by his gastro who assessed the j-pouch to be in great health 5 years after the first Radiation Treatment.
Fantastic news. Thank you for responding!
I am so glad to know that there are alternative opinions and options available to me should the need ever arise.
the thought of any additional surgery in the pelvis is terrifying.
thank you again.
@Wife posted:If I may add a different opinion on item 2 above:
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
My husband has had two rounds of Radiation; first round of Stereotactic RT in 2016. Cancer came back in 2021. Second round (called salvage RT) was done through Brachytherapy (Sept. 2022). Yes, the pouch sits immediately next to the prostate, but they use a SpaceOAR; it is hydrogel that prevents the pouch from receiving radiation. Our latest PSA showed a drop, so we are hopeful it worked. We also had a full exam by his gastro who assessed the j-pouch to be in great health 5 years after the first Radiation Treatment.
Hey @Wife! Good evening! Unfortunately my father’s latest PSA test came back slightly greater than .4 which his current urologist said is all but confirmation the cancer has returned.
First, thanks for your recent testimony and sharing the fact that your husband had successfully received TWO rounds of radiation!
I’m reaching out to ask if you could share your husband’s radiologist’s information, so we can potentially contact him/her for further advice and guidance.
Thanks in advance! 
MichaelEJohnson4@gmail.com
972-809-3640
Call me any time. Left you a message. Emailed you too.
@grr456 posted:I recently had my prostate removed in Jan of 2022 and I am 70. I got my J-Pouch in 2000 and have had very good luck with it these past 21 years. I was diagnosed with cancer nearly a year ago. I couldn't find a surgeon anywhere in the Michigan area, even though there are many J-Pouchers in the Metro-Detroit area.
I had many adhesions with several blockages over the first 5 or 6 years. So my options were going to be complicated, no matter which route I chose.
I was going to go with external beam radiation, until I saw my original J-Pouch surgeon and he said absolutely not. He said no matter what the radiation doctors tell you, they can't be as accurate as they need to be with the external beam. But, he suggested the high dose radiation method where they implant radio active seeds within your prostate, which in turn kills the prostate and the cancer. So, that seemed like a great alternative, until I went thru all of the testing and the prostate was too dense (or something) and I wouldn't be a good candidate for that.So, back to looking for a surgeon who had experience. The radiation Doctor knew Dr Karnes and recommended hom. I took a ride and spoke with Dr. Karnes at the Mayo Clinic in MN and he said he was very familiar with J-Pouches and prostate removal. I was very comfortable with him and what he said and everyone I met there. Rochester MN is a 12 hour drive for me and I was dreading the drive home a few days after the surgery.
So, I cold called the Cleveland Clinic whis is less than 3 hours from me. They referred me to Dr. Kaouk who was also familiar with prostates and J-Pouches. I drove to the Clinic to meet with Dr Kaouk and his assistants and once again, I was very comfortable with what he said and how he was going to handle everything.
Since I would have to travel to see either Doctor, I chose the Cleveland Clinic only due to the shorter drive for me. Both Doctors seemed more than qualified and personality played no part, strictly 3 hour drive VS 12 hour drive after surgery. Dr Karnes prefers an open surgery while Dr. Kaouk uses the latest single port DaVinci robot for surgery.The bottom line is that I am happy I went with Dr Kaouk and robotic surgery. I have a single 2" scar from the surgery, instead of a longer scar from an open type surgery. When I woke up in the recovery room was in absolutely no pain. I spent the night in the hospital and went home at 11am. I was never in any pain. The pain scale never went above a 1 or 2 - I could bend and get out of bed without problems and it never really bothered me. He used superglue on me and that began flaking off after a few days and still no pain even when I washed the incision...
So, that is my long winded prostate removal story. Please feel free to contact me if anyone has any questions...
Gary....rce789(at)yahoo.com
I am 53 and i have had an enlarged prostate for a few years. I had a cystoscopy a few years ago and urologist stated then my prostate was size of an older gentleman. Had my first Total PSA lab a year ago and it was 1.97. the Cleveland Clinic range was up to 2.6. My urologist ordered a FREE PSA this time and i had the lab yesterday. Thru MyChart the result came through but i didnt look at it as im terrifed but did see a note stating we can discuss results at my office visit on this friday. But now I am freaking out thinking its bad news. I have crippling anxiety and assuming the worst so I called my urologist office and asked for his nurse to call me back and let me know good or bad as i cant wait till friday. She is supposed to call me back this afternoon. But I live in Cleveland so if I need a biopsy or if its cancer and need removal I will request Dr Kaouk. Your surgery was 2 years ago now, can you detail the outcome and any lasting effects from it. ? I worry about losing my redone pouch and the obvious things like urinary incontinence and erectile dysfunction.. Lets just say I am terrified right now.
@Pouchomarx, I cannot say I understand what you’re going through as my father is the one who went through this in 2020 (went to Dr. Karnes for his prostatectomy), but I empathize with you for sure! I’m am also an obsessive worrier who couldn’t stand to wait 5 minutes, let alone a few days. Did your doctor’s nurse give you a call back? Ultimately, I truly believe things will work out for you. I’ll be praying for you for sure. Please keep us posted. Feel free to call/text me anytime as well. 972-809-3640 ❤️
@MikeEJ34 posted:@Pouchomarx, I cannot say I understand what you’re going through as my father is the one who went through this in 2020 (went to Dr. Karnes for his prostatectomy), but I empathize with you for sure! I’m am also an obsessive worrier who couldn’t stand to wait 5 minutes, let alone a few days. Did your doctor’s nurse give you a call back? Ultimately, I truly believe things will work out for you. I’ll be praying for you for sure. Please keep us posted. Feel free to call/text me anytime as well. 972-809-3640 ❤️
Had my appt friday. PSA is now 2.78, and FREE PSA was 30% which is considered abnormal with Cleveland Clinics chart of 2.6. My urologist stated lets get PSA again in 6 weeks and if its any higher he could order a prostate MRI so we can see if anything looks suspicious. If anything is there and PSA goes up then consider doing a biopsy. He knows about my jpouch and cant do biopsy the normal way so said he doesnt do the biopsy but the interventional radiologists do them transuretheral. Actually get the biopsy thru the bladder, and if Mri is suspicious they can pinpoint which areas to biopsy. Said its CT guided . If it is cancer then he would send me to Dr Kaouk at Clinic as hes done removals on jpouch patients robotically thru the perianal skin with great success and little complications. But said lets not get ahead of ourselves, and one step at a time. Said if cancer we are on top of it and will get it very early. But also stated we already know my prostate is slightly enlarged from the cystoscopy so i coul be dealing with BPH and not cancer as that can cause elevated PSA as well . still very scared though
Thanks for the update! Not getting ahead of yourself and worrying is absolutely way easier said than done, but it’s still a true statement and one I hope you can manage to accomplish! 😊
We’ll certainly be praying for you! We look forward to your next update! God bless! ❤️
Glad your okay