Latest meeting with my Uro/Surgeon

Aside from replacing the blocked catheter this morning, this is a summary of what we discussed as possible options:

My uro/surgeon and I had a good talk about where I stand, and what are my real options.  Based on this latest surgery, he said that he still sees extensive radiation damage in the bladder neck and lower end of my bladder in particular.  More evidence to me that the radiation center may have been very wrong about protecting these areas while radiating me with a catheter.  But that’s an entirely different issue. He also said that in the 3 months since he had last operated on me opening up the bladder neck, that it had already scar over aprrox 50% in that short a period of time.

The doc now feels that since I am coming up on the 9 month mark post SRT, that a “natural” healing probably isn’t going to take place.  While not wanting to rush into anything, he is deeply concerned about my quality of life issues at this point in time.  The choices for action seem to follow along these lines of thinking:

First, I could stay long term, even forever on SP catheters.  There are patients that have them for 15-20 years, primarily people with severe neuro damage.  But that would mean monthly painful cath changes for life, constant risks of UTI, and though rare, possibility of developing bladder cancer.  Plus it will still leave me with never ending bladder spasms and the general nuisance of constant catheter care.

Second, we talked again about a first rate reconstructive urinary surgeon from Duke University.  Dr. George Weber.  It would involve a lengthy and complex surgery, where my existing bladder neck and urethra connections would be taken apart, and then reconstructed.  But, the feed back so far, is that with so much radiation damage to those areas, the surgery would be even more risky than normal, and involve up to 10 days in the hospital, a long recovery time, and a high risk of total and perm incontinence, even if the rest of it worked.  His general opinion is that any kind of surgery on radiation damage areas is problematic to start with.  If it weren’t for the radiation damage, it might be worth investigating further, but that is not the case.  The expenses beyond our insurance for having  an out of state surgery, and all that it would entail, would be out of sight, even if this made sense.

Third, I could have a urinary diversion surgery known as an ileal conduit surgery.  They have been done and perfected for years, and considered the “gold standard” of urinary diversion surgeries.  It would take about 3-4 hours of surgery locally, and about 4-5 days in the hospital.  It would eliminate any need for catheters forever, low risk of UTIs, no bladder spasms, as the bladder is being bypassed entirely.  It is still another form of open surgery, so there would be some longer recovery time.  But if done correctly, it would bypass any of the damaged areas for good, and once recovered, I would be able to return to a completely normal life and be able to do anything physical I wanted, i.e. bike riding, swimming, mowing, etc.

For a long term fix, it sounds encouraging, even though I would have to go through another major surgery  (though no way as complex as my open Prostate Surgery).  Another plus is I would never have to worry about any type of incontinence, ever, and it would eliminate any possibility of future blockages and strictures.

We are going to consult with my wife in 4 weeks, to see what direction we want to go next as I continue to heal from this latest surgery.  It will give me a chance to gather other opinions and more time to research what may lie ahead.

 David in SC

 

David - as with all the variable we face in life - there is always hope - wishing you all the best for whatever method you choose -
hopeful hugs
BRONSON

thanks, bronson, you are always a pal

sephie,

my uro has been angry from the start with the radiation clinic. he said its typical in his practice, that after the radiation folks fry a person but good, their job is done, and he has to be the one to help pick up the pieces with the patients. he did intervene for me several times while going through the radiation. if i initated something with the rad clinic, he would definitely supply medical data to back up the damage. not sure what it would or wouldnt prove to push the point to them. sure they will go into denial, and sure i signed papers in the past to protect their back sides, and they might just claim that no one can know in advance how a particular patient will react to the poisoning, scattering, and damage from radiation in general.

i did hand deliver a two page letter to my radiation oncologists about a month ago, outlining some of the horrific things I have endured since the radiation ended, but as of now, haven't heard a word. my doctor wouldn't hesitate to call a spade a spade (no racism intended) if push came to shove.

David,
I'm glad you had a serious discussion with your uro. He seems to really care. Your third option looks good but I'm afraid it sounds too good. Where does the urine accumulate and how is it emptied?

Actually, a piece of the bowel is used as a tunnel to funnel away the urine to a collection bag outside of a stoma. The urine is not collected anywhere in the body per say. This is no mixing of #1 and #2 at any point.

Cheers and screams from the audience -> GO FOR DOOR #3

Keep up the good work storm trouper. The third option sure seems to be like a light at the end of the tunnel.

That choice is the least complex solution of all that I have been told about and have read about. It has been used for decades, and they have it down to a science, with fewer complications and risk over time. Also, as my doctor said, it would avoid using any areas that have been effected by the radiation, and by-pass those areas.

Part of my wife's job is nursing in severe damage re-hab patients. She told me last night, that she has a new male patient that had the same op done years ago for different reasons. She s going to talk to him this week, to find out what it was like, the operation, the recovery, learning to live as the results, day to day problems, etc

Of all the diversionary methods, its definitely the least invasive once they get you open. The thought of never needing to take ditropan again, and never having spasms, sounds too good at this point. We shall see.

The hardest part would be agreeing to and gearing up for another major surgery. But then, since Nov 8, have now had 7 operations, so whats one more, especially if it ended this painful merry go round I have been stuck on

David,
I'm not the least bit knowledgeable about any of this (and hope I don't ever need to be), so can only support you in continuing to research the options, and be comfortable with your choice.

David, first, it is nice to see you being able to deal with options and positive possibilities. Second, I am overwhelmed by the complexity of all this. I know you are a straight up detail man by nature and will be, with your wife, in as good a position as anyone, short of a uro doc, could be dealing with this, but still, it must make you want to run and hide in a tree fort with a beer. I'd be wanting to take my Teddy to the tree fort, but as a tougher guy than myself, you'd likely not opt for the Teddy.

Take care.

Sheldon AKA Sleepless

 

Hi David,

Sorry to hear about the latest pain and discomfort.

Option 3 sounds like it could bring you relief and be workable.

An associate who has (now metastatic) bladder cancer, had most of his bladder and his prostate removed as his first line of treatment along with RT. The surgeons made him a new "bladder" from part of his small intestine. He leaks a little bit at night and pees normally. I don't know much else about his procedure but it may be similar, in part, to what you're looking at.

Good luck with whatever you choose and I'm sure you will research and weigh the options carefully.

Think of you often.

Mike

PS: A little delivery is scheduled to your house on Thursday

 

David,

You certainly have been through more than most of us and while I am not about to claim that my journey has been anything like yours, reading your entry today there is a comment or two I'd like to make.

The healing process from my salvage prostatectomy was hampered by the radiation damage to the tissue from the seed implant 10 years earlier. My doctors at Sloan-Kettering told me about Hyperbaric Oxygen Therapy. Basically, five days a week, for 8 weeks I spent two hours a day in an oxygen chamber breathing pure oxygen. The purpose was to promote healing and blood flow through capillaries into damaged tissue. After 20 sessions, my doctors noticed improvement in the tissues. In fact, the rectal fistula had decreased in size by 50%. It improved other things, as well. The thinning spot on the top of my head started showing signs of new growth!!!

I know I mentioned to you once before about the AUS implant and it sounds like that may not be a solution for you. In discussing my incontinence issues with my specialist at The Cleveland Clinic, he told me about a procedure that seemed interesting to me and one that I would have seriously considered had the AUS not been a solution. He said that they build a channel of tissue from your navel into your bladder. Then with sterile "straws" you empty your bladder when you feel the need. He said that you would keep a bandage of some sort over your navel at all times to prevent infection.

I just thought I'd give you something "extra" to think about.

Wigs

WIGS, some interesting ideas, an AUS definitely wouldnt assist in my problem. My dr and I did discuss hyperbaric treatments once before, while he believes in them for some issues, he didn't think it would be helpful where I ail. We talked about the "naval" method, but passed on that, as I don't want a lifetime of having to self cath in a sense everytime I need to urinate. Good ideas though. Thanks.

James, still not sure what procedure you saw or read, this is really a simple urinary division surgery. It does not affect the bm side of things, nor does it mix the two together. If you find a name of what you speak about, share it so I can read about it.

Mel, sorry, theres' a long list of people ahead of you locally for my monkey. I do have a large family of Gumby's and Pokeys if interested.

Mike, thanks. There are ops that replace the bladder as you say. With those, sometimes they still exit to the urtethra and sometimes to the surface, requiring self cath for relief. Commonly done for bladder cancer. Much more complex surgery.

David, nothing really to add to the discussion, but have been following this and wish you all the best in the next phase of your journey.

Wife and I had a talk about your situation last night and it was very enlightening to her as she had no idea that when you sign that little piece of paper saying you understand the complication of the procedures...what that actually means and what can happen. Everyone goes into surgery thinking that they won't be in that small percentage that has complications...but you never can be sure.

Just thinking of you and yours today....