Skip to main content

Good evening everyone!

My father was diagnosed with prostate cancer in June of 2020 and was frightened to hear numerous urologist say they couldn’t help because of the J-Pouch (they were scared they might puncture the J-Pouch during prostate removal surgery and wanted no parts of that).

A few urologist encouraged radiation, but after speaking with his jpouch surgeon, the surgeon said there were many dangers with radiation as the pouch more than likely would be damaged and may not function as a result!

We felt doomed and hopeless until we found a few doctors who had successfully performed radical prostatectomies in J-Pouch patients! I’ll list them below:

Dr. Jeffrey Karnes (Mayo Clinic - Rochester, MN) Ph: 507-266-3066

Dr. John W Davis (MD Anderson - Houston, TX) Ph: 713-792-3250 | Ph: 713-745-7575

Dr. Eric A. Klein (Cleveland Clinic - Cleveland, OH) Ph: 216-444-5598

We decided to go with Dr. Karnes at the Mayo Clinic and had a GREAT experience! Everything was first class and top notch! I’m SUPER thankful to say my father’s updated PSA 3 months after surgery was <.1 which means he is in fact CANCER FREE (thank God)! His original PSA pre-surgery was 24!!!

Hearing multiple doctors say they couldn’t help demoralizing, but there are doctors out there who can help! Keep the faith!

-Mike

Original Post

Replies sorted oldest to newest

@MikeEJ34 posted:

THANKS A BUNCH! Yes, all glory to our Lord and Savior Jesus Christ!!!!

My father was 60 when he got the diagnosis and turned 61 a few months later!

Thank-you for posting your dad's age, a lot of people say not to bother relying on PSA numbers after a certain age, but as you can see; Prostate cancer can show up at any age. I am soo happy your father is okay

Do you have a pouch too???

@MikeEJ34 posted:

Absolutely!! I found a few encouraging posts on here when I was doing research! I’m sure someone will find the info and use it to save their loved one’s life in the future!



I don’t have a pouch, but I’m thankful my dad was able to get one to ease his colitis!

That is pretty cool! I love that you are on here spreading helpful info! Is your dad on here too???

You must be your dad's caregiver huh?

I am happy you did not get Colitis; IBD is hereditary

I know this thread is old but I thought I would add my two cents.

back around this time as I was interviewing surgeons, my yearly psa test jumped to 10.4.

every colorectal surgeon warned me to deal with prostate first if needed since radiation would be a big no no for the future jpouch and they stated it could be ruined permanently.

I had I a biopsy and no cancer was found so I have dodged that bullet for now.

but I do think what if? In the future.

Thankfully these days there are numerous doctors who have successfully completed prostatectomies in J-Pouch patients. Obviously there are still risks associated with  prostatectomies in J-Pouch patients, but your chances of a successful prostatectomy without J-Pouch violation/failure are better than what they were!

It’s still no easy decision and can be scary for people on this situation, but I believe everything will work out just fine! In Jesus’s name!



Lord willing you won’t have to have a prostatectomy though!

I think piercing the small intestine/jpouch  with a biopsy  needle would be a no-no.

Also, I would not want the trus device being shoved up there, stretching the anal anastomosis and putting it at risk for tearing.

I would opt for a trans peri-anal biopsy, where they reach your prostate via the area btw the anus and testicles.

Is your Urologist aware of your new anatomy?  

Last edited by New577

Hey everyone!

Unfortunately my dad’s latest PSA is 1.05. He had a successful prostatectomy September 2020 and his subsequent PSA December 2020 was under .01.

One urologist is recommending hormone treatment which will stop the cancer growth, but according to him that’ll only last for a few years and the cancer will resume to grow.

Another urologist is asking us to get an MRI to see if they can locate the cancer (CT and PSMA Pet scans haven’t revealed where any cancer may be). They’re hoping they can locate the cancer and maybe freeze it or even radiate if in a “safe” location as to not impact his pouch.

Reaching out to see if anyone was or is currently in this predicament. If so we’d greatly appreciate y’all’s feedback and advice as to what y’all did and what we can even possibly recommend to the doctors.

Thanks in advance!

Mike

972-809-3640

MichaelEJohnson4@gmail.com

Last edited by MikeEJ34

There is another forum out there, that I have visited, that will answer you questions much better than we can.  I am going to DM it to you.  I follow these threads because I run a high psa, and I want to stay on top on the current treatments out there.  Typically in these situations, there is salvation radiation and/or hormone therapy.  A top notch oncologist well versed in this scenario is a critical component. 

As many of us are aware, prostate cancer and/or other prostate health issues affect millions of men, world-wide.  Add into the 'mix', other health issues - including those of us with J pouches - then other very important things have to be taken into consideration.
I live in Spain and I was recently diagnosed with a low level of prostate cancer (Pca) Gleason 6 (3+3), following a fusion transperineal biopsy. My added 'bonus', is that the prostate has grown into the bladder.......I'm currently on Active Surveillance, but have been 'researching' in respect of how to move forward with this. And on a very positive note, there's an array of excellent information out there- both conventional and otherwise- to help those facing these issues....

This is Ed. Going back to my original post, I opted for the transperineal route for the biopsy.  However, even with this route, it is necessary to insert an instrument into the rectum/pouch to generate a real time image to merge with the MRI image.  So for me, there was still the issue of having to insert an instrument that could be larger than the diameter of my anastomosis.  I found a doctor at the Cleveland clinic (Dr. Z. Schwen) who was familiar with this issue and he was able to perform the biopsy without any damage to my anastomosis.  Unfortunately, the biopsy was positive for cancer.  After examining the options, I have chosen to have a prostatectomy.   

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×