The Arrow #276 Bladder Cancer

Greetings everyone.

I’m going to start this Arrow off with this preface. I’ve been writing feverishly for the past week or so on this issue. MD kept telling me I should break it up into parts. She finally asked me last night if I had gotten to the part yet where Napoleon had invaded Russia. I got her point. When she asked me that, I was almost finished. When I did stop writing, I did a word count. As written, the post ran a bit over double the word count of a standard Arrow.

I read it all over and submitted it to Perplexity to review for misspellings and grammatical faux pas. It came back with a list as long as my arm. I didn’t have it in me to do all the corrections at 11:30 last night, so I waited until this morning. When I awoke, it was with a jolt. I remembered that the platform I’ve been writing on for the last couple of years has a character limit. I learned that lesson when I exceeded it once.

I realized I was going to have to break this issue down into two parts. Which I’ve spent all day doing (and fixing the spelling errors and grammatical issues). What follows is Part 1.

I’ve got a personal story to tell in this Arrow and the next one as well. I was not intending to ever do this, but my family tells me it is a story worth telling. I promised them I would tell it in time, and I guess this time is now.

This will be my cancer story.

Yep, I was diagnosed with muscle-invasive bladder cancer in December 2024. And have survived it and been declared what they used to call ‘in remission’, but now it is called ‘NED’ (no evidence of disease). Since many cancers come back, oncologists are loath to use the term remission unless a patient is in NED for at least five years. 

So, I’m not completely out of the woods yet, but I’m feeling pretty frigging good.

As anyone who has read The Arrow for a while knows, I’m not big on blind adherence to the Standard of Care (SOC). When I was diagnosed, I immediately started looking for another means of treatment besides the SOC, which at the time was chemotherapy followed by cystectomy (bladder removal) once you’d recovered from the chemo.

I’ve got to level with you; I almost did go for the SOC (not completely), but a fluke along the way changed my course.

It all started in late October 2024 when I developed dysuria, which means pain or burning during urination. I experienced this once, and then every time I peed after that first time it burned a bit. Not a lot, but it was noticeable  .

So I ordered some urine test strips from Amazon. When they arrived, I checked my urine every time I urinated. There was nothing there. No blood. No signs of infection. Nothing.

Since I had never had any inclination toward being a urologist, I took no urology elective courses in medical school. So my knowledge of urology is (was) severely limited. I knew the basics, but that’s about it. 

One of the basics is that blood in the urine of a female is generally nothing much to worry about. Women get urinary tract infections way, way more often than do men, and often these infections are accompanied with a bit of blood in the urine.

That is not the case with men. One of the things I did learn in med school is that blood in the urine of a male patient is not a good thing and needs to be worked up quickly.

I had no blood, so I breathed a sigh of relief. I did wonder what was causing my dysuria. I dug into it and discovered there is a malady called urethral syndrome, which is described as dysuria without any other findings. In other words, no one knows what it really is. Since I had no symptoms, I assumed that’s what I had. There is really no treatment, so I figured it would ultimately go away.

I continued to monitor my urine, which continued to be normal. MD and I flew to Santa Barbara, where we were going to hang out with our fam there. We flew out in mid-November and were going to stay until a few days before Christmas, at which point we were planning on coming back to Dallas to celebrate with our family there.

In late November 2024, I checked my urine and discovered blood. I checked it a few more times with the same result.

I’m not a part of the medical community in Santa Barbara, so I had to go through all the hassle one has to go through to get seen by a  specialist. I lucked out in that I had a surgeon friend in my golf club who referred me to his urologist.

I got an appointment on December 4. The doc told me I needed to be worked up to evaluate my hematuria (blood in the urine). He sent me for a CT scan on Dec 11, 2024. The scan revealed that my right kidney was enlarged, and that I had what appeared to be a mass on the right side of my bladder.

Here is the conclusion from the scan.

Neoplasm is doctor-speak for cancer.

 I was NOT expecting this. I figured maybe an enlarged prostate or I had a bit of prostatitis, but that was not the case. It took me completely by surprise. MD, too. Both of us know all too well what a diagnosis of cancer means. I was stunned. MD started crying. Which is the only time, at least as far as I witnessed, she cried during this entire ordeal. She has been my rock.

The day I read the results of this scan was the day I went on a strict ketogenic diet. More about which later.

Before I go on to describe just how bad this situation was – every new test and/or procedure showed it to be worse than the one before – I need to lay out a little anatomy for those who aren’t familiar with the medical terms for the bladder and kidney drainage system.

The ureters are the two tubes that carry the urine from each kidney to the bladder. There is one ureter on each side: one going from the right kidney to the bladder, and one from the left. The bladder is a holding tank for urine. The urethra is the tube through which the urine leaves the body. It runs through the penis in the male and the vulvar vestibule in the female.

The trigone of the bladder is the triangular area bounded by where the two ureters enter the bladder and the outflow hole of the urethra goes out. It makes a triangle, thus the name. The triangular area I’ve outlined in red is the trigone.

The opening in the bladder wall where the ureter feeds through is called the ureteral os, or just os for short. There are two of them: one on the right, and one on the left. This becomes important later.

The next step in this ordeal was an in-office cystoscopy, a procedure involving running a tube called a cystoscope up through the urethra into the bladder to have a look around. I was not looking forward to it. My urologist told me it wouldn’t be as bad as it sounded. He was right. It wasn’t. But it wasn’t exactly fun, either.

It was kind of a surreal experience. There was a large TV screen in the room where he scoped me. Once the cystoscope reached my bladder, the image was projected on the screen. There was cancer all over the place and a lot of edema (swelling). As you might imagine, it was quite surreal for MD and me to be looking at this cancer objectively as physicians, but at the same time as real people whose lives were about to be changed.

At the end of the procedure, the doc pushed fluid into the bladder, washed the bladder, and extracted the fluid, which was sent to the pathologist, who confirmed there were malignant cells in the wash.

The next step was bladder surgery to do biopsies of the cancer and to take a longer look around under general anesthesia.

I was also scheduled for a full body PET scan to determine if there has been distant spread of the cancer.

But Christmas was fast approaching, and all the operating time and the doc’s time were scheduled out. I was going to have to wait till after Christmas (probably after New Year's Day) to get it done. We were contemplating going back to Dallas on December 22, but figured the situation would be the same there.

Then one of the many flukes in the process reared its head.

I got a call from the doc’s office late on December 16th telling me one of his surgical cases was canceled at the last minute. If I could be at the hospital at 6 AM the next morning, he could operate on me.

So, on December 17, 2024 I was there and underwent bladder surgery.

As we learned from the CT scan, my right kidney was enlarged. This was a consequence of the tumor’s blocking the right ureteral os and thus blocking the flow of urine from the right kidney into the bladder. The back up of urine generated by my right kidney caused it to be enlarged, which is called hydronephrosis. Not a good sign.

Part of what the urologist intended to do during my surgery was to insert a stent through the os on the right side up through the ureter and into my right kidney to open the passage and keep open the flow of urine into my bladder and relieve the pressure on that kidney.

When he got in, he couldn’t find the os on either the right or left side due to cancer covering the area in the bladder where the right one entered and attendant swelling obscuring the other. Soon my left kidney, earlier unaffected, was about to develop the same problem as the right kidney. This was confirmed by a rapid rise in my creatinine levels, which indicate a problem with kidney function.

The urologist took some biopsies while he was in there, which pathology showed to be muscle-invasive bladder cancer. The graphic below shows my cancer in red. The graphic isn’t exactly accurate as stage 2B is actually muscle invasive. The graphic shows it going up to the muscle, but not into it. But it was the best graphic I could find. Also, this graphic shows the tumor stages as little blobs. Mine was all over the bladder.

While I was headed for the recovery room, he went to the waiting room and told MD and our son that I had pretty extensive bladder cancer. And because he couldn’t get the stents in, I would have to have them put in percutaneously, which means through my back. He also told them that my best odds for survival were to undergo chemotherapy followed by removal of my bladder.

MD told him she knew that I wouldn’t opt for traditional cisplatin chemotherapy. He asked why. She told him both of us had seen way too many patients on chemo and what happened to them. We felt it did more harm than good in the end.

When I finally got to my room in the hospital (my operation was early in the morning) it was almost 6 PM, because there were no available beds in the hospital earlier that day.

During the surgery, I had a catheter inserted that was about the size of my thumb (literally), and when I got in the room, I was set up to have my bladder irrigated continuously. The catheter didn’t really bother me unless someone bumped against it, so I tolerated the irrigation well. But I was worried about the catheter getting pulled out at some point. I’ve inserted and removed a lot of catheters in my time as a physician, but never one anywhere as near as large as the one I was sporting. (Despite my dread, when the nurse removed it five days later in the office, it was a non event. It didn’t hurt at all.)

Here is a photo of me in my hospital bed waiting to be taken to get the stents put in. My first time ever in a hospital when I was the patient.

The stent placement was a piece of cake. The radiologist gave me local anesthesia in the right side of my back and slipped the stent in under radiographic guidance. Same with the left side. Within just a few hours after insertion of the stents, my creatinine returned to normal.

During that same day, while laid up in the hospital bed awaiting the stent insertions, I wrote The Arrow #207.

The family medical crisis was, of course, me. But I didn’t want to make it known to everyone what was going on until I figured out what I was going to do. And learn the results of whatever decision I made.

There are a few reasons I didn’t want to let people in general know what was going on with me.

1. Since the death of Robert Atkins 20+ years ago, MD and I have become the OGs of low-carb dieting. At least from a clinical perspective. Our friend Steve Phinney is the OG of the academic low-carb researchers. Since both MD and I sincerely believe – based on many years of clinical practice and God only knows how much scientific evidence – that the low-carb diet is by far and away the best diet for anyone with metabolic problems, we didn’t want X and other social media platforms to be rife with troll commentary about how my following a low-carb diet brought about my cancer. Here is just one example from the past of what would be many were the internet trolls to have their way.

2. At the time I wrote Arrow #207, I wasn’t at my best. I hadn’t started exploring the data on bladder cancer, and didn’t know what I was going to do about my situation. I pretty much knew I was going to take a metabolic approach, but I didn’t know exactly how I was going to do it. I wanted some time to contemplate. (I should add that the very day of my surgery in Santa Barbara our house in Dallas was broken into and ransacked. It was, not to put too fine a point on it, a miserable day. Thank God our beloved DIL was able to meet the police, secure the house, and take care of all the cleanup involved while we were away.)

3. Whatever I decided to do, I didn’t want others following my footsteps as I didn’t know what the outcome might be. I didn’t want to lead others down the primrose path until I had trod it first and emerged from it better off.

I was scheduled for a PET scan on December 24, 2024 to see if I had any metastases. 

PET scans are interesting and are themselves an argument for avoiding carbs. It is well known that cancers love glucose. In a PET scan that understanding leads to the ability to find cancers – even small ones – anywhere in the body. 

Here’s how these scans work.

The scanee – me, in this case – is infused with a fluid composed of glucose that has a radioactive molecule attached to it. After the IV push of this fluid, it takes about 30 minutes for the cancer cells – if there are any – to gobble up the radioactive glucose. Then the scanee lies on a platform that moves back and forth under a scanner that picks up any radioactivity, which indicates the presence of what they term glucose-avid cells – i.e., usually a cancer. 

In my case, I went through getting the IV and getting started with the scan, when all of a sudden all the lights flicker. As it turned out, a freaky little sudden storm had knocked out the power in the part of the hospital in which the scanner was located. They tried to get things restarted but too much time elapsed and the test had to be abandoned until the power was more stable.

They rescheduled me for a few days after Christmas. For which I was kind of glad since I could celebrate Christmas with the fam in Santa Barbara. It was sort of a sad Christmas as it was. It could only have been made worse if I had been told I had metastatic cancer.

A few days later, I repeated the scan. This time all went well. I got the results of the scan, but neither MD nor I really wanted to see the results. Until we looked, it was what I called a Schrödinger’s cancer (see Schrödinger’s cat). Schrödinger’s cat could be either dead or alive, but he only knew if he opened the box. I could be I was riddled with cancer, but I would only know once I looked at the scan results.

When MD and I did look, we discovered – to our immense relief – that the cancer was localized to my bladder. There was no sign of spread.

When we saw the urologist for the final visit and the catheter removal (which was a day or so before Christmas), he described for us the Standard of Care, which, of course, he recommended. I needed chemotherapy followed by bladder removal.

He knew already that I would reject chemo. He told me he had looked up the statistics, and chemotherapy provided only a 2.6 percent increase in survival. I wondered who in their right mind would go through 6-8 weeks of chemotherapy and all the misery that entails to get a 2.6 percent increase in survival.

We then went on to discuss a cystectomy, the removal of the bladder. It is a long, complicated surgery, and no one in the Santa Barbara area does cystectomies. I would have to go to Los Angeles to have it done. It’s about a seven hour surgery with a seven or eight day hospital stay after.

I told him that we would go back to Texas and have it done there. I was more connected to the medical community in Dallas and already had a connection with the University of Texas Southwestern. I have friends on the faculty, and they gave me the name of the best urological surgeon there. I ended up getting an appointment with him on Friday, Jan 10, 2025.

Now here comes a major fluke.

We flew back to Dallas on Jan 6. On Jan 8, a huge snowstorm was predicted in Dallas. For those of you who have never lived in the South, whenever snow is predicted, or if even one snowflake falls, everything shuts down. In this case, UT Southwestern called me to tell me my appointment with the surgeon was going to be via Zoom, as he wasn’t coming to the office because of the looming storm. 

We had the Zoom appointment on Friday morning, and he laid out the Standard of Care, which was the same as the urologist in Santa Barbara had already done. He recommended six weeks of chemo, and then “when I recovered from that,” we would set the date for the cystectomy surgery. I told him I didn’t want the chemo, and asked him why we just couldn’t do the cystectomy and be done with it. He said we could, but since he wasn’t at the hospital, he couldn’t check the operating room availability and other logistics. He told me to call him the following week, and we would find a time.

Here is where the fluke comes in. Had it not snowed, I would have seen the doc in the clinic. He would have had his scheduling people handy, and I would have been scheduled for a cystectomy on the spot. And in my shell-shocked state, I would probably just have gone along with it. But thanks to the snow, which almost never happens in Dallas, I was able to reflect and take a different course.

We flew that same Friday night to Phoenix for a weekend scientific conference. During the rest of Friday after my discussion with the UT Southwestern surgeon, I ran a savage burn on the medical literature and printed out a number of papers to take with me on the trip.

Reading these papers, looking up the authors and finding videos they had made, changed my mind. I decided to talk to some of the docs at the meeting to see what any of them had to say about the plan I was contemplating. I got mixed reviews. All of them recommended against it, but when I told them about the papers I had read, most thought it might be worth giving a try.

As the meeting ended and everyone was standing around chatting and saying goodbyes, I sought out the organizer, whom I hadn’t had the chance to talk to the entire weekend. I told him I had been diagnosed with bladder cancer. He told me that a mutual friend of ours, also a physician, had also been diagnosed with bladder cancer.

Our mutual friend was retired from the faculty of a top-tier medical facility in the southeastern part of the country. I contacted him when I got back to Dallas. I sent him my path report, and he told me my diagnosis was much worse than his. He encouraged me to come stay with him and see his urological oncologist, whom he thought was the best in the country.

I told him I was going to bolt from the Standard of Care and do my own thing. And I told him what that entailed and sent him the papers. Unbeknown to me, he relayed what I told him to his own doc and asked his opinion. My friend relayed his doc’s opinion back to me.

He said his doc told him I would be f#%king crazy to do anything like what I was contemplating. And if my friend decided to do it, too, he would be f#%king crazy. His doc told him if he did such a thing, he would fire him from his practice.

As you might imagine, this sobered me a little bit. But not completely.

I had decided I was going to do what I thought was scientifically valid. Not what was the mainstream traditional view, most of which is directed by the pharmaceutical industry and based on research funded and often controlled by the pharmaceutical industry.

I asked a friend of ours who organizes a lot of medical conferences if she knew any urologist who might take on my case. I was going to need ongoing surveillance of my bladder. She told me about a guy, whom, as it turned out, I had met at multiple meetings and had had a number of conversations with. I knew he was a doc; I just didn’t know he was a urologist.

We set up a call. I sent him all my reports.

When we spoke, he briefed me on bladder cancer. He asked if I had ever smoked. I told him I had not so much as smoked a single cigarette in my life. I grew up in a family of smokers, and I hated it. He told me men get bladder cancer 27 times more often than women. Obviously, I’m a male, so that puts me at more risk. He asked if I had taken the COVID mRNA vaccine. I told him I hadn’t.

He told me he had seen a number of women with bladder cancer, all of whom had been vaccinated, so he was wondering if that could be a cause. Bladder cancer has been on the rise since COVID, but no one really knows why.

As far as I could tell from my reading, there were no dietary risks for bladder cancer. The known risks were being a heavy smoker, being male, and, possibly, the COVID shots.

After we hashed out my history and all, he gave me the Standard of Care spiel: chemo and cystectomy.

I told him I was contemplating going another way. I explained the papers I had read, and the path I was planning on following. He had been to the same meetings I had been to; the ones where Thomas Seyfried laid out the data for the metabolic theory of cancer.

As it turned out, he, too, was sold on the idea of the metabolic theory of cancer.

There was a long pause in the conversation.

Then he said, “I’m going to take off my doctor hat and put on my friend hat. If I were in your situation, I would do exactly the same thing. Or at least give it a try for a while.”

His office is about a three hour drive from Dallas, so I asked him if he would monitor me while I went through the process. He said he would, and he added that he would fill my chart with admonitions recommending I follow the SOC. He said he would write that he begged me to follow the SOC, but I refused. And said he would write that he would monitor me out of friendship and to try to do his best by a patient within what the patient would accept, but would continuously document that he encouraged me to get chemo and a cystectomy.

I started my own regimen in mid-February 2025. I lost about 55 pounds over the course of my various treatments. I looked like a refugee from a concentration camp. But my condition gradually improved. I never thought I was going to die (nor did MD), but many of the rest of my family, who saw my condition up close and personal, did. Or had grave doubts at the very least. Once my cancer was gone – based on PET scans and ctDNA (a great tool, more about which later) – I gained back close to 40 pounds in about two months, and pretty much got back to my old self.

I’ll explain how I did it in the next Arrow, out in a few days, but I’m putting most of it behind a paywall, in part because of the internet trolls. But also because I have hundreds of faithful readers who are paid subscribers. They have continued their paid subscriptions despite the fact that I haven’t put up a paywall in at least a couple of years. I owe it to them for hanging in there with me when they could have read it for free. Plus this whole situation has taken a huge financial toll on MD and me, and subscribers to The Arrow have been our major source of income. Those of you who have purchased premium subscriptions, I can’t thank you enough. I don’t know what we would have done without you.

I’ve been too busy writing to come up with the Odds & Ends. And to look for interesting videos. If space permits, I’ll include both in the next Arrow.

Time for the poll, so you can let me know what you think of this week’s issue.

That’s about it for this week. Keep in good cheer, and I’ll be back soon.

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This newsletter is for informational and educational purposes only. It is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice.

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