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.