CONFUSED and TORN ABOUT TWO ISSUES … ADVICE NEEDED?

[KiltmakerRon]

I’m now 19 months into my “Cancer Adventure” … high-grade NMIBC. I’ve had 2 TURBTs, 1 mitomycin, and 9 BCG treatments (didn’t tolerate those very well). At this point, no recurrence after many cystoscopies … so that’s the good news.

HERE ARE MY TWO ISSUES: #1 Unfortunately, the location of my tumour was right at the entrance of the ureter into the bladder, and scar tissue keeps blocking the entry for the flow of urine … leading to kidney problems. I had two failed attempts to place a ureteral stent in 2017, PLUS a failed attempt to place a nephrostomy tube in 2017. I have now had repeated stents since January of this year, and the pain from them is debilitating.

At my surgery 2 days ago, the surgeon hoped to remove the stent, but had to insert a new one because the ureter was “collapsed”, and now he wants me to come in next week to “discuss further management”. I was still in recovery, but what he said to my wife was that he wants to try to re-direct the ureter to a different part of the bladder. HAS ANYBODY HAD THAT? AND DOES IT WORK, OR IS IT A CRAP-SHOOT? With all my problems with scarring, is this going to be an interim step before having to go back in & remove the kidney on the affected side … in which case would I be better to lose the kidney now, and save myself one of these major surgeries?

ISSUE #2: The cancer seems to be dormant. I have said right from the beginning that I won’t have my bladder out … the thought of it makes my stomach turn … BUT NOW I’M BEING PRESSURED TO RECONSIDER THAT. I truly admire the people who are able to do it, but I know myself pretty well after almost 70 years, and I know that I would be miserable. SURELY SOMETIMES QUALITY OF LIFE IS MORE IMPORTANT THAN LENGTH OF LIFE?

I would REALLY like to hear from anyone who can help me sort out these questions.

Ron.

[marysue]

Hi Ron:

Wow!!  What a dilemma!  This won’t be an easy decision to make.  I’m not medically trained and therefore not qualified to give medical advice but the following are just some of my thoughts:

1) The question about whether the relocation ureter surgery would only be an interim step is best answered by your surgeon. My suggestion would be to ask him something about the success rate of this type of surgery and the benefits/risks for your situation.

2) Ask whether removing the kidney and ureter on the affected side will resolve those issues once and for all and what amount of kidney function you would have with the remaining kidney.

3) Why are you being pressured to undergo bladder removal when you have not been diagnosed with muscle invasive bladder cancer? Does your doctor feel that you are at high risk for recurrence and progression?  Does he feel that this surgery will be a “kill two birds with one stone” scenario? (Get rid of the ureter issue and eliminate the risk of recurrence once and for all) If you are not satisfied with his responses I suggest seeking a second opinion.

4) Some patients that have had bladder removal with the outside pouch need to have nephrostomy tubes anyhow because the ureters get kinked/stretched after the surgery. Something to ask about if you eventually do consider bladder removal. If you are a candidate for a neobladder this may resolve the ureter and bladder issues because it would be an internal reconstruction and the ureters would be reconnected to the “new” bladder. This might be your doctor’s thinking. Again – this is a topic for deep discussion.

5) If you have not already done so, I suggest that you consider talking to people that have had bladder removal surgery; both the pouch and neobladder.  You may glean some useful information about quality of life and it may lessen some of your concerns.

You are right about the quality of life issue.  You know yourself best and obviously should be the one making the decisions so that you can live as good a life as you can.  After getting some knowledge from the above I strongly suggest that you sit down and make a list of the pros and cons for:

1) Quality of Life post op with the ureter relocation surgery.

2) Quality of Life post op if you have the affected kidney and ureter removed.

3) Quality of Life post op if you have bladder removal surgery with/without prior ureter relocation surgery.

By quality of life I’m referring to the mental, emotional, psychological, spiritual impacts in addition to the physical impacts of each option. The physical list would also include any potential future risks/problems you’d have to consider living with.  It is a big circle with all aspects of yourself intertwined. It may be a crap shoot no matter which decision you make but I think the idea would be to make a decision that is the smallest crap shoot. I hope that this helps.  Take care.  ((((HUGS))))

[Jack Moon]

Hi Ron

Mary Sue has given you some good advice. Important to understand we are not doctors and your situation is very complex. I will give you the same advice I pass on to many patients. Before any major surgery, I personally would want a 2nd opinion at a major cancer center. The urologist/oncologists at the major cancer centers deal with bladder cancer on a daily basis, and may have dealt with a similar condition that you have. If you are interested in getting a 2nd opinion, just private message me and I will assist you in the procedures in getting this done in a timely manner.
All the very best,
Jack

[KiltmakerRon]

Mary Sue … Thank you so much for “GETTING IT”, and for your thorough reply. I think it IS time to talk to some people that have faced these particular issues … I had a couple of chats with people I met here when I was still blind-sided from my diagnosis, and they were very encouraging when I needed encouragement.

Now, I need to talk specifics. I suspect that there are people out there who are completely satisfied with their choices, BUT there may also be some who regret the direction they took. I think I need to hear BOTH kinds of stories to be able to make the right choice for my life.

xoxo Ron.

[marysue]

Hi Ron:

I hope that by talking to various people it will give you a better understanding of all the options.  As mentioned this is a complex situation and you are the one that will have to live the rest of your life so that means making a decision that you can live with.  Thankfully you are cancer free at the moment so that buys you some time to be able to reflect on what you hear/learn from others.

You are right in that talking to others will help with the pros and cons of each situation.  The biggest task is to decide what you can live with.  If you do choose to try to keep your bladder what stressors will you live with versus the stressors of bladder removal.  If bladder removal becomes the more likely choice and you do have the option of either the pouch or neobladder, again it will be a deep think of which  post op “lifestyle” will work best for you.   I suggest taking Jack up on his offer to get connected with people that have had the surgeries.  ((((HUGS))))

[David Smith]

Hi Ron,

I’m sitting on the plus side of the fence and am very happy with my neo.check my profile and previous posts to get the lowdown on my circumstances and subsequent experiences.

Best Dave.

[KiltmakerRon]

Thank you so much to everyone. The responses here, and from a U.S. group called “Inspire”, are helping a LOT to lower my anxiety … as is going back on an antidepressant!
I’ve been trying to do this “alone in my head”, when I should have asked for help back last year at the time I first got my diagnosis. xoxo

[marysue]

Hi Ron:

I had to travel the road alone because at the time of my 2008 diagnosis BCC wasn’t up and running yet and I had minimal computer skills so I had no idea I could Google on line and find maybe something like Inspire.  The cancer centre here in Calgary wasn’t of much help as they didn’t have their psycho-social support set up yet either.  Thankfully I discovered BCC and now our cancer centre has supports in place and we also have Wellspring, a community support centre dedicated helping cancer patients and their loved ones.

That being said, sometimes we don’t realize we should be asking for help.  We either think we are fine or think we should be able to manage by ourselves.  Sometimes we don’t even know who to ask, or what to ask for.  I have found conversations with other patients to be a vital key in figuring out what I need for myself and that is why I always strongly recommend talking to others.  The cliché “It takes one, to know one” is never more true than here.   (((HUGS)))

[KiltmakerRon]

So here’s the result of the visit with my surgeon. He’s going to do a PARTIAL cystectomy … he’ll remove the part of the bladder where the bad ureter attaches (which is also the location of the stubborn scar tissue where the original tumour was), and reattach the ureter in a new location. Three to four week recovery, indwelling catheter, and obviously ANOTHER stent. It doesn’t put me out of the woods for a cancer recurrence, but for now it takes the strain off the kidney. No date yet … he needs a second surgeon assisting, so we’re waiting to see which of the partners in his practice can join the party.

[marysue]

Hi Ron:

It sounds like this option meets your needs and concerns at this time.  I know someone here in Calgary that has had a partial cystectomy.  She did have to do chemo treatments as well but has recovered and is fine health-wise.  Please keep us posted.  Best of luck going forward.  (((HUGS)))

[KiltmakerRon]

Thanks, Marysue!

[KiltmakerRon]

Back in September, I posted a question … CONFUSED AND TORN ABOUT TWO ISSUES … ADVICE NEEDED? (I won’t repeat all the earlier details, but you can see them above) … I received an immense amount of help from so many people here, that I wanted to tell you my results.

I DID go ahead with the partial cystectomy & ureter re-implantation on Nov. 6/18, and it was a success (although the catheter for 3 weeks was a nasty experience). Then ONE week later (so 4 weeks after the surgery), the incision burst open revealing that I was full of a tunneling infection.

The infection took 7 weeks to heal with home nurses coming 2-3 times per week to pack the wound. I’m left with a scar that looks like an extra belly-button, so I now tell people that I’m an alien! As an EXTRA SPECIAL BONUS, I also have an abdominal hernia from the incision. Clearly, my career as a 70 year-old male bikini model, has come to an end!!!

The latest news??? I just went for a follow-up scope to see how the bladder & re-implantation were healing, and the cancer has RECURRED. The new tumour wasn’t there on Dec. 17 during the scope to remove the stent … so it’s come up in 8 weeks. VERY disheartening! But thanks again to all of you for providing a safe & supportive place to ruminate. Ron.

[Nightingale]

Hi Ron,

First, I want to commend you for your humour, it sure helps getting through these difficult moments.  As I read your update, I was expecting you to end with a happily ever after conclusion.  I am saddened by your outcome.  I can only hope and send positive thoughts your way; that the medical professionals find a way to fix your situation.

Thank you for sharing.  Please keep us informed of your progress.  This will help others who might be experiencing what you’re going through.

My best,

[KiltmakerRon]

Thanks Nightingale!

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