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I just got diagnosed a few days ago with prostate cancer, Gleason score of 6-7.  I have had the j-pouch for a little over 20 years and have had my issues with pouchitis, etc.  I'm 64 years old, and I think in reasonably good health otherwise. 

Has anyone here had recent experience with the various treatments?

 

Thanks,

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Hey!

Have you been able to identify a doctor who can remove the prostate?

My father was diagnosed a few weeks ago. The cancer hasn’t spread, but he needs to do something  soon.


He wants to pursue the prostate removal, but his doctors in Dallas don’t have experience with it in J-Pouch men and don’t want to do it.

Thanks for your help!

Mike

Hey @sahbumnim! So sorry for your diagnosis! Trust you’re on a platform where you’re not alone!

My father was diagnosed at the end of June! After searching and being referred to numerous doctors, we found a few! The one we went to and had great success with was Dr. Jeffrey Karnes at the Mayo Clinic in Rochester, MN!

When we spoke to him in August he admitted prostatectomies in J-Pouch patients weren’t all that common, but mentioned he had actually successfully performed 2 in the last 6 weeks (look at God’s timing!)! We knew right away this was our guy!

My father gets his updated PSA in 35 days or so (to confirm he’s cancer free), but we’re praying and claiming he is in fact cancer free now!

Hey! My father had a successful prostatectomy in September of 2021. His 3 subsequent PSA tests have confirmed that there is no cancer. He’ll have another PSA in the next month or so. We’re praying that test confirms he is still cancer free.

Jeffrey Karnes at the Mayo Clinic in Rochester, MN did my father’s prostatectomy. There are others we consulted with that can do the procedure as well.

What are some of the questions you have that I may be able to answer?

Thank you so much! We are in LA. The docs here (UCLA and Cedars) say the prostatectomy is not an option because of adhesions and difficulty getting to the prostate. They say that if they do it, they run a high risk of incontinence. He had radiation once and the cancer came back (Gleason 4+3). He is taking hormones, and the PSA is coming down but has terrible side effects. We are considering either a Tulsa Procedure or a second round of radiation (salvage). Both are risky. He is 78 and otherwise in good health. Plays golf 5 days per week, travels and has a very positive attitude. I think surgery may be an option - but not here; a consultation with your doctor may be a great option  us. We cannot find a surgeon in LA that has done the prostate removal with a patient  on a j-pouch! Thanks again.

Last edited by Wife

We already spoke to him! He thought (6 years ago) that the surgery would be too tricky - had never done a j-pouch prostatectomy and may just have to open him and close him up. He thought there was a high risk of failure. He has lots of adhesions. But then again, it is 6 years later and maybe it is time to talk to Gill again. Sorry to ask, but are there any incontinence issues for you?

thank you!!!!

My dad doesn’t have any issues with that, thankfully.

Dr. Karnes warned that there was a chance of permanent incontinence and a chance that the j-pouch could be violated. These were the same reasons 3 “top rated” doctors in TX refused to do the prostatectomy on my father. However, as stated, my father’s procedure was a huge success! My father’s numbers were astronomically high. So high, one doctor said that surgery was a futile attempt at removing the cancer, because although imaging showed the cancer hadn’t spread, it more than likely had with a PSA score of 24.

On the surface it made sense, but we kept the faith and got a successful result!

@Wife

Got my pouch in 2003. Had my prostate surgically removed 01/2021.  Dr. Bo Shen at Columbia Presbyterian NYC is following my pouch.  Prior to surgery I consulted with radiology/freezing/surgery.  The consensus was surgery.  Dr. Joel Decastro was my surgeon.  He had prior experience with pouch patients. Very pleased with him.  A couple months later I started having incomplete emptying and pouchitis.  Defocagraphy and manometry determined my pouch had lost the support that my prostate provided to the pouch.  My pouch was also twisting when emptying.  Citroen covered the pouchitis.  Dr. Shen placed rubber bands in my pouch to expand it, and create scar tissue inside. The purpose was to create scar tissue inside and stiffen the pouch.  The bands come out while defecating.  Was also prescribed bio feedback physical therapy to retrain my pouch to work properly with my anus.  Early in the PT but I have seen some relief.  In the middle of all that i learned I had a bacterial infection from yersinia.  Most often caused by consuming undercooked pork.  Symptoms resembled pouchitis.  Still, I am glad I had my prostate removed.  Best of luck.

Thanks so much. All his doctors are so against the surgery! Cannot get anyone to agree to it! This is very valuable information.

We also went to Bo Shen but he was with the Mayo Clinic in Cleveland at the time; it was a few years ago. We went for a second opinion after the j-pouch was in for about 2 years and my husband was going to the bathroom at least 12 x day. He is down to about 7 or 8 (mostly at night), but were are use to it now.

If the LA docs continue to not agree to the surgery, we may have to start looking into your surgeons.

Thanks so much for responding.

Hey @Wife!

My father saw 3-4 urologists in Dallas and all of them had the same concerns with surgery (scar tissue his j-pouch created). They all warned of potential fecal leakage and j-pouch failure if something went wrong during surgery.

However, after doing some googling we actually came across Dr. Bo Shen and setup a meeting with him to discuss. This was around June of 2020. He was absolutely against radiation which was what the Doctors in Dallas were opting to go with, even though my dad’s PSA and grade of cancer was off the charts. Dr. Shen feared that the J-pouch would fail because of the radiation.

We ended up getting my dad’s prostatectomy done at the Mayo Clinic a year ago last week actually and everything couldn’t have gone better! I’ll copy and paste the 3 doctors we consulted before finally deciding to go with the doctor at the Mayo Clinic.

I did not have adhesions. I have been with Dr. Shen for many years. I started with him at Cleveland and followed him to NYC.  I am. In NY State about 4 hours north of the City. It was about 6 hours to Cleveland so it was a plus. My pouch surgeon was David Halleran in Syracuse.  He was not able to get my issues at the time under control. He encouraged and assisted me in getting an appt. with Shen.  After my first scope by Shen, he complimented Halleran for the good job building my pouch.  I have much faith in all the doctors imentioned.

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