How I Made the Decision to Have a Neobladder
One thing they tell you when you write for sites like this is to be really careful you don’t provide medical advice. I am not qualified to give advice, and each of you reading these posts have different issues with your cancer. The stage and type, any confounding health issues such as weight, high blood pressure, diabetes, heart issues, whatever. Only your health advisor, doctor, or nurse has the education and experience needed to give you advice.
I can only provide you with my perspective.
And this was my experience when I was deciding which type of diversion to have after I was diagnosed. It is a single perspective.
Brain or gut? A little column A - a little column B
For almost every important decision I’ve ever made in my life, I’ve done a boat-load of research. From which type of ballpoint pen is best to cars and computers. I don’t know what I did before Google. I do spreadsheets and lists. I assign points to the different features I want and how important they might be. I agonize over these decisions almost to the point of not making the decision at all.
But 7 years ago I had to make a fairly big decision, and I didn’t do any of that.
The initial diagnosis and treatment recommendation
When I was initially diagnosed with bladder cancer, it was with a doctor about 30 minutes from me. I went there because his practice was connected to the hospital I went to when I finally decided totally bright-red urine wasn’t good and I should have it checked out. They were the folks that did the initial biopsy and tumor staging. That doctor was the one that initially told me I had Stage II bladder cancer, and the treatment was neoadjuvant chemo and surgery. The surgery would remove my bladder and they offered three different options, or diversions, to replace the function of my bladder.
Robotic or open cystectomy? Which type of diversion?
They then told me I needed to make a couple of decisions. First - did I want to do the surgery “robotically” or “open” and then which type of diversion did I want? I was ill-prepared to make either of those decisions. I thought to myself “What did I know about diversions?” and what are they asking me for my opinion? They should be telling me which one to do. I asked the doctor what he recommended, and he said I should get an external urine pouch and do the surgery “open.” My wife and I left his office thinking it was decided. Open surgery, external pouch diversion.
Getting a second opinion
We then read we should get another opinion. We did. We went to the University of North Carolina medical hospital, and they suggested that I go into their clinical trial where they were studying the difference in outcomes between robotic and open. I would be randomly assigned to one condition or the other. And they recommended a neobladder diversion.
Deciding between 2 different medical opinions
Well, now I had two almost opposite opinions. How do you decide? Luckily for me, I had some help from an unlikely source.
One day, during one of my initial meetings with my oncology doctor (the one focused on the chemo part of my treatment), we were talking about my treatment protocol. Which drugs, how often, side effects, etc. The doctor and the nurse were going through all the information about my chemo when the doctor asked what my surgery plan was. I told them both that we had somewhat decided on the open surgery and the external pouch option. I had barely had that sentence out of my mouth when the nurse said quite forcefully, “You can’t do that. You don’t want that pouch hanging off your side for the rest of your life. You’re still a young man!” I looked at her, surprised at how passionately she had jumped into the conversation.
The decision was shifting toward the neobladder option
Well, when a medical professional weighs in like that, you pay attention. I looked to the oncologist and he echoed her comments, telling me that the neobladder was a good option and that robotic surgery can help reduce recovery time. So I counted that as a ¾ opinion. So now I had 2 ¾ opinions and the weighting was shifting to neobladder and robotic. My next stop was one more urologist to talk about their point of view related to the surgery. Luckily, in my home town was a urologist who was a teacher of the technique for creating the neobladder and had a team that was very experienced with the process. She walked me through everything and was very reassuring.
Here’s the pro/con decision I made
As I mentioned, I normally do a lot of research. But in this case, my decision hinged on these three things.
- The passion the nurse had for the neobladder and how much she felt it was a better decision.
- The experience of the final team I chose for the surgery. They had done this a lot more than the one doctor who suggested the external pouch.
- And the final checkbox was when the last surgeon told me that if I did the pouch I was stuck with it. No going back. No other options. By going with the neobladder I always could go with an external pouch in the future if for some reason I had big issues with the neobladder.
No spreadsheets were involved in this decision
That is the entire checklist. No big research project. No spreadsheets and weighted averages. Simple.
And 7 years later, I have a neobladder that works. Limited problems with mucus (it’s a thing). No need to catheterize (many do still have to do this.) And 100% daytime continence and 99% nighttime continence. In other words...it was the right decision for me.
There are more things that can go wrong with a neobladder but to me, it was worth the risk.
This isn’t advice.
This is just one man’s story and point of view
Talk with your healthcare provider. Everyone has their triggers. Mine was when the nurse said I was still a young man and that I’d have to live with the decision for a long time. I liked that she thought I was a young man (I’m not) and that she responded as if she cared. There was heart in her recommendation...not simply statistics and outcomes.
I needed that heart in the decision process instead of my normal spreadsheet.
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