Prostate Cancer Found in My J-Pouch!

My answer. And some won't like it.

Now this is if I were in your position. And your age comes in too. I'm close to your age.

Removal. And an end ileo.

If that is what will get rid of the cancer. And no chance of spreading. Definitely I would do it. No question.

I did it with the thought of prostate cancer coming into my picture later. I was 60 when I did it. My removal.

But I had a list of reasons to do it. Cancer being one. I won't go into my problems.

But the end ileo saved me.

You do what is best for you. But besides the cancer. I know what your going through. And getting my end ileo all the stuff that came with the pouch. Left with the pouch. I'm doing great without it.

I go to my family Dr today. I had blood tests done. I get my results today. It's the only way I can check my prostate.

I wish you the best.

Long road. Long road.

Richard.

Richard I was thinking you’d respond—thanks. But just so you’re aware, the prostate cancer can still metastasize anywhere whether the pouch stays or goes. Excising it might only delay ADT.

I understand that a little bit.

That's why I said "if" it gets rid of the cancer I'd do it.

But no one could know if it truly gets rid of it.

It's a sad case of what to do.

What is ADT?

Richard.

androgen deprivation therapy

I guess I'll look that up.

I have no idea.

P. S.

OK.

I see now.

Thank you.

Richard.

Well this is a subject near and dear for me.

i have had a high/bouncing PSA since 2012. Three months before my surgery it peaked at over 10 with a negative biopsy.

my surgeon has repeatedly warned me not to have radiation should I ever get PCa. While it easy to talk on this side of the fence, I have a different perspective. Not only do I not want any surgery ever again, I will do almost anything to keep my pouch. I hated the loop and my life at the time and I never want to go back to an appliance.

i am in the camp of the least risk option. I already suffered complications from the first surgery that I have well documented here, and I just don’t have in me to get cut open again.

i am just one man’s opinion here, but I thought I would share.

Thanks for your thoughts News577. I’ll continue to post how this goes..

- John

@New577 posted:

Well this is a subject near and dear for me.

i have had a high/bouncing PSA since 2012. Three months before my surgery it peaked at over 10 with a negative biopsy.

my surgeon has repeatedly warned me not to have radiation should I ever get PCa. While it easy to talk on this side of the fence, I have a different perspective. Not only do I not want any surgery ever again, I will do almost anything to keep my pouch. I hated the loop and my life at the time and I never want to go back to an appliance.

i am in the camp of the least risk option. I already suffered complications from the first surgery that I have well documented here, and I just don’t have in me to get cut open again.

i am just one man’s opinion here, but I thought I would share.

I totally agree with you on having any surgery. Elective anyways.

My psa was just checked. It's fine.

But as for being cut open again. No thank you.

Most miserable period in my life.

Fortunately I am well past it. All is good.

John.

I hope everything works out for you.

Life is hard enough without adding more health issues.

Good luck John.

Our thoughts are with you.

Richard.

The saga continues--pouch excision surgery is in 5 days. I was in Cleveland yesterday for the pre-ops. I met with my surgeon, the stoma nurses, had an MRI and labs. I was told that my case was brought before the tumor board twice, plus consultations with pathologists and radiation oncology on the best way to move forward. Fortunately, the cancer was found on the backside of my pouch. Had it been on the front, next to my bladder, the surgeon was going to recommend removing it as well. That was a chilling moment. I was told that once the pouch is out, the surgeon will position the small bowel so that radiation of that backside area might be a possibility once I’ve healed. I’ll also be getting the Barbie butt. Hard to believe this time next week I’ll be two days out from surgery. I’ll update this page again. Thanks to those who responded to me privately. It's appreciated!

- John

Just an update—I had the pouch excision/Barbie butt/permanent end ileo surgery two weeks ago. The procedure was performed at CC Main Campus; we live in Virginia. I have three words—“I am happy.”

The surgery was a beast as everyone who has experienced it will attest. I went in strong and healthy, with the exception of the known presence of prostate cancer in my pouch. I was told afterwards that I had had very few hiccups given the complexities and opportunities for set-backs. I lost a liter of blood in surgery so two transfusions were ordered during recovery. I woke up with an NG tube that stayed in place over a week—nothing but ice chips that entire time. Everything was uncomfortable but the nurses were great. I was tied down with IV lines on both arms, the NG tube, the JP drain, the Foley catheter,  the ridiculously heavy Telemetry battery box running wires to my chest, the new stoma and pouch, plus the clot stockings. Having a roommate made it all the more difficult with double the nurse interruptions and visitation noise. I didn’t even turn on my TV the first week. I checked in Monday morning January 29 and was released Wednesday February 7.

Today, at home, I am still taking Tylenol and Oxy as needed for pain—primarily overnight, but the ab muscles are extremely sore. A Home Nurse is scheduled today to remove the 20-something staples. I am walking more and feeling good.

Back to my statement “I am happy.” Being on this side of the surgery and reflecting on it all, I must say I like my stoma. I lIke how easy it is to manage versus the trials and tribulations of my j-pouch. Of course, I’m retired now and don’t have the stress of getting ready for work while still recovering as before. Life is good. I have a voracious appetite and have eaten foods I have not touched since pre pouch.

I’ll update more later. The Barbie butt is weird but what a huge, positive difference it will make.

-John

For anyone with a jay pouch who finds themselves with Prostate Cancer.

I had a J-pouch fitted in 1995.

In 2014 I was diagnosed with a large aggressive Prostate Cancer.

It completely filled the right side of my prostate. It had also grown into the left side.

It had also grown outside my prostate in two places, including up and around my Seminal vesicles.

I had radiation and hormone therapy.

27 years after my J-pouch operation, and 10 years after my prostate cancer diagnosis, at age 79, my PSA is still currently undetectable.

I run a Zoom group where people with high-risk or advanced prostate cancer (largely Australian) discuss their progress and options at:  https://www.jimjimjimjim.com/

Hope this helps someone