The Arrow #277 My Bladder Cancer Treatment

Greetings everyone.

Before we launch into part 2 of my cancer journey, I need to make a few comments.

First, I wrote in the last Arrow that I saw MD cry only once during my ordeal. Well, now I’ve seen her cry twice. This last time was when we both read the comments, poll responses, and emails last week’s post generated. I, myself, got a bit misty eyed. Thanks everyone for the tremendous amount of support, sympathy, and empathy we received from many, many readers. It was overwhelming, and we both are extremely appreciative.

Second, what you are about to read is my own experience. What I came up with that I thought was best for me. And I wagered my life on it. I am not recommending anyone else follow in my footsteps. I charted my own path, which was my choice. I am absolutely NOT recommending others do what I did. As anyone who has read my writings for a while must know, I am not a fan of knee-jerk adherence to the Standard of Care (SOC). The only recommendation I can make is that those who find themselves in my situation and are leery of the SOC seek out an open minded physician to work with. Do not go it alone. I did not go it alone. I made my own decisions, but included several physicians in the process.

Third, cancer is a brutal disease. No one who has not had it, or who hasn’t taken care of or lived with a loved one who has had it can’t possibly imagine how awful it is. We read all the time in the media that so and so (some famous person) just died after battling cancer for X number of years. I’ve read these reports countless times and never thought about how just terrible the battle was. Now I know. And my battle was minimal compared to that of many others.

Years ago, I was persuaded by Thomas Seyfried’s argument that cancer is a metabolic disease, not a genetic one. I wrote about his theories in a few early issues of The Arrow. But being persuaded by a theory when it is more or less academic is a whole different kettle of fish than embracing that theory when confronted with a life-threatening disease.

Had anyone asked me what I would have done were I to come down with cancer, I would have replied that I would opt for the metabolic treatment choice in a nanosecond. But when the question was not theoretical, but instead existential, it gave me pause. I did immediately upon diagnosis start a very strict ketogenic diet. But that’s as far as I had gotten.

Were it not for the fluke of the Dallas snow storm, I would probably have gone with the SOC (minus the chemotherapy) and had my bladder removed.

Bladder removal is not a trivial process. There are two options: one of which is peeing through a stoma in the abdomen via a  tube into a bag attached to one’s leg, or having a neobladder built out of a piece of intestine. Neither option appealed to me. The approach that has been done for decades and has been perfected is the ureterostomy. 

The neoblader is a relatively new procedure. It allows one to urinate the regular way…sort of. Problem is, the intestines are made to absorb things, not to function as storage tanks, which is what the bladder is designed for. And that creates a multitude of potential problems.

Neither approach was appealing to me. I wasn’t keen on having an ostomy, nor was I keen on having the neobladder experience that Deion Sanders did when he had bladder cancer surgery.

As Samuel Johnson famously said, “Depend upon it, Sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

The fluky snowstorm gave me the time to concentrate my mind. Which I did by doing a deep dive into the medical literature.

I came across a paper from Stanford that was a case report of three subjects, all of whom had some kind of genitourinary cancer. One of the three subjects was a female who had the same exact issue I had.

This was the same situation I had, right down to the same presenting syndrome. She even had the cancer in the same place (right bladder mass), requiring a percutaneous stent.

Unlike me, she had gone through an entire battery of chemotherapy and, on her own, had taken a repurposed drug not approved for humans. She ended up with no cancer detected (NED), but they still recommended she have her bladder removed. Although the article didn’t state it in this way, she basically told them to put the idea of removing a non-cancerous bladder in a place where the sun doesn’t shine. And she remained cancer free.

Let me remind everyone. This was a case report, not a randomized controlled trial (RTC). Case reports don’t prove anything. When doctors come across an unusual case or unexpected finding, they often write it up as a case report, so other docs can see it.

It’s not proof of anything, but it does show that it worked for at least one person. Even RCTs are a mixed bag. They are never 100 percent. If you do a trial on a certain drug and it works on 20 percent of the subjects, but doesn’t work on the other 80 percent, it probably won’t get approved. Be that as it may, it still worked on 20 percent of those who took it.

That’s the way I approached these case studies from Stanford. If it worked for this lady with the same cancer I had, maybe it would work for me. Not the chemo, which she had issues with, but the repurposed drug.

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