A Decision Has Been Made on another Operation

You can read about my latest cath change in the other post.  The main reason we went to uro today was to discuss what to do long term.  And I wanted my wife there so she could hear first hand.  I had a list of 25 questions about the urinary diversion surgery, and we went over each and every one, slowly.  This visit lasted just shy of an hour, and my dr. was in no hour, despite having a full lobby.

He told us  that my bladder was in very bad shape from the radiation, and that he fully believed that it would never get better or heal on its own, not as long as urine kept entering it.  He also said that despite 6 operations to keep the bladder neck open from strictures, that it was never going to cease being a problem.  There' more evidence then ever, that my SRT should have never been done the way that it was, and that most of the damage will be lingering and perm.

Looking at doing a Ileal Conduit Urinary Diversion Surgery sometime in mid-to-late September.  It is a major but common urological surgery, often done for people with bladder cancer.  He has done lots of them in his career, and its considered the "gold standard" of those types of surgery.  He expects 2 to 2 1/2 hours of surgery, and 4-7 days in the hospital, and about 6 weeks of at home recouperation time.

My hospitial, St. Francis, has an excellent stoma/ostomy nursing staff to teach us how to live this new way of urinating.  And its the same hospital that has the best patient care in the state of SC year after year.  This will be my 8th surgery since 11/2008.

He said in theory, it could be re-versiable, but why?  He doesn't want to remove my bladder, because it would add a lot more complications and surgery and healing time.  He said its possible one day, they may have too if there is ever any evidence of bladder cancer.

The prep for this surgery is very involved, and I will be spending time with a stoma nurse experimenting with the future placement of a  stoma.

They usually use a piece of the lower bowel in this op, but he said if it looks too radiation damaged when he's in me, they will have to use some material from the colon higher up, which will add to the surgery time.  He said there is no way to know until he's in there.

This is good and scary at the same time.  I need quality of life here, and I think I have done all I can in tryin to tough it out all this months hoping for a natural healing situation.  But that's not meant to be.

While this started out as a chronic stricture problem from the initial surgery, it has become a mega disaster from the SRT.  I am still mad at me for going against my own gut feeling.  For me, the worse case scernio from RT happened.

As far as my rising PSA, he's deeply concerned, but said what I have said, let's wait till the next reading in November, if it goes up at all again, then probably would mean the SRT failed.  Worry about one thing at the time was the attitude.

He said he definitely would not do HT at this time, that its important not to mask the natural direction of the PSA at this point.  He said it may come down to HT ultimately, if I plan on living longer, but we need to watch the psa right now.

My PC journey is about to take a new twist, and enter a new phase.  I don't look forward to another major surgery, but then, I can't keep going in this world of pain and hurt all the time.

David in SC

 

David....at least you've made the decision.We'll all hope for the best. Not sure I can picture the procedure/outcome of this particular surgery, but I'll google it so I know what's in store. You have multiple QOL issues going on, so this will take one/some of them off the table. Bravo for bringing the hammer down on the decision; I know it ain't been easy.

Arnie in DE

Tud, am pondering possible litigation or at least investigating it. My uro all but directly blames blotched radiation for my condition, and feels that much of it is perm. damage. It was my uro that interceded a couple of times to the radiation clinic. Stupid me, toughed out those 39 treatments, as I thought that is what I was suppose to do. We shall see.

Thank you Steve, I am hoping it is. Sure beats the alternative of staying in this hell that I have been living for all these months. I am a broken man on the pain front, honestly just can't keep taking it. The pain won, I lost, I admit it.

I cringed and jumped in my chair reading your other post. This one sounds like a plan to me! Not what you had planned way back when but as you know we have to deal with the cards as they fall. Now you have to think up a new name to use on this forum. I feel your days of purgatory are coming to an end.

Larry

David,

I am relieved to hear that you see viable options and have come to a decision. I don't know the procedure, but I trust that you, of all people, have made an informed decision.

You have my 110% support, for what little that might count, and you always have my best wishes that improvement is on the horizon. The near horizon. Very near.

Zen9 got the legal angle right, for the part that I know something about.

As always, hang in there.

Zen, I agree that David is a big boy and I am not trying to pressure him into litigation.  Rather, after reading all of his posts about his radiation process and problems, it occurred to me that he might have a case.   Many medical malpractice lawsuits are taken on a contingency basis, so David would not bear the financial burden.  And, as for the "tough as nails" part...I think most of us could agree that David already meets that criteria in spades!

Anyway, it was just a thought...not a topic for debate...

Tudpock (Jim)

David,

I am as pleased as everyone that there may light at the end on this tunnel for you and QoL. I know that you will be in very good hands. Your doc has been through this with you from the beginning as much as he could. He knows what you have endured and most probably wants to be the one to bring all of this to an end for you. It goes without saying that knowing what he does he will go to extraordinary measures to insure that all goes well and everything is successful.

Mid September is when Lynn and I are leaving to head north, I can definitely see a stop in Easley as the first part of the trip. Headin your way brother, look out.

On the legal note for you and the others; after my conversation with you about this a little while back, Lynn has been working with her contacts to set you up with the right legal folks to take this on when you are ready. For those that don't know, Lynn was the Executive Director of a very large law firm in the SE before she was forced into disability retirement. She is using her contacts to take care of David in this arena. A good part of their practice was dealing with medical malpractice on both sides of the issue.

So brother David, the decision is done. Make ready for the day and get ready to start a life with a much higher level of QoL. You have definitely earned it.

Sonny

David,
Glad a path has been chosen, wishing you an easy journey and a quick recovery.
Dave in Durango CO

So the key question in any litigation will be who messed up ~ the surgeon or the radiation center, or both? From what I've read since you had issues after surgery neither has been stellar. It may come down to what they find after the next intervention if there is even a litigation possible, or that both failed to perform at minimal standards. I can't really say. But...

You know my thoughts ~ before you allow anyone to touch you again, verify the procedure with 2nd or 3rd opinions. Where would I go if it was me? Mayo and MSK have outstanding reputations in reparative surgeries. Maybe one of those extremely experienced surgeons? Catalona, Menon, Walsh?

What a mess, David...

Tony

David:

Frankly, from reading all your posts and being here at arms length, I would say your decision to have surgery is truly a no-brainer. Your QOL is horrible and I hope that this time you will have a good surgical outcome.

On the one hand, you keep calling this surgery very routine. But, it sure doesn't quite sound like it. This is MAJOR surgery. But, I guess it is like a heart bypass. Very routine...yet very major. However, if I have to have a heart bypass, if I am well enough and have the time I would seek out an experienced, excellent surgeon. One wants to have a lot of confidence in his/her surgeon. You appear to have a great deal of confidence in your guy, so there's not much more to say on that score.

Regarding the possible lawsuit, from everything I've read, you have a great case. But, good luck proving it. If your current surgeon would truly testify, that would go a long way. In fact, it might result in an out-of-court settlement. The only problem, this would be very stressful. I think of myself. Suppose my family doctor neglected to alert me about a rising PSA and here I am. I'm feeling okay, but fighting PC is so stressful in itself. I don't think I would want to add the stress of a protracted lawsuit. Of course, the medicos count on that too! In your case, you would have to PROVE that the radiology folks did something outside of the usual standard of care. Given your history, I still think you have a case. But the emotional price is steep.

Anyway, David, I wish you the best.

sony, thanks for the advice, i am interested at some point in making a local legal contact here, will need some guidence and advice for sure. we can talk about that at depth some time.

tony, yes, it is a mess. the lingering damage has only been post srt. the original stricture issues are no one's fault, my body's annoying way of over-scarring all the time. except for the recurrance issue that forced the srt, i was a pretty well healed person at that point in time. i fault the radiation clinic's denial that there was burning and scattering going on, with just the catheter in place, instead of a bladder full of urine/water for protection. They could have chosen to fill my bladder via the cath and close it off while being zapped. i suggested that and was told it wouldnt be needed. i think the whole problem is that my entire urinary systems was subject to direct high doses of radiation without any protection in place. but what do i know, i am not a doctor.

thanks also to 6071 and dave

David,

Good luck with your choice. I just hope it improves QoL.

At a complete loss of words to add anything else...

Thinking of you often.

don, thanks of course

mel - my srt was out of the ordinary, they had never done one with my circumstances before, right now, can't even think about the hassle, got to get through this next surgery and concentrate on that. i want to be better, or mostly better before the holiday season, as my last 2 years were so messed up

thank you dan and jake, yeah, i got a great family, couldnt make it without their support

mikey, weve known each other quite a while now, hard to believe this is still going on. thanks.


rob, thanks working on that pain relief part as we talk