David’s Story: “Make your first shot your best shot, even if it’s going to be a harder route.”

An annual check-up took a distressing turn when David Klaus unexpectedly received a bladder cancer diagnosis. The discovery of blood in his urine had initially raised his concerns, but he never anticipated such a diagnosis. Despite the challenges he has encountered along his bladder cancer journey, he imparts a valuable piece of advice he received at the outset of his treatment: “Make your first shot your best shot, even if it’s going to be a harder route.”

It all started in September of 2021 when I went to the doctor for an annual physical. He said, “You have a few red blood cells in your urine. You need to go see a urologist.” Since I knew what urologists did from a prior experience with them, I tried to negotiate my way out of it. “Why don’t we wait a while?” And he said, “No, no, you got to go.” In the month or so between the time when I made an appointment with the urologist and got there, it was perfectly obvious and visible that I had blood in my urine.

I went to Dr. Juan Litvak in Bethesda, Maryland, whom I had seen previously for another issue. He had me do two things. One was to provide a urine sample, which they checked for cancer cells as opposed to red blood cells and he sent me for a few CT scans.  The next day when he got the results from the urine test and CT scans he called to tell me, “It looks like you’ve got cancer. We need to do a cystoscopy.”

Dr. Litvak did the cystoscopy in November and the pictures looked exactly like what I had seen on the internet of what a bladder tumor looks like. At that point, he said, “We need to remove it.”

Frankly, by the time I got to my first appointment, I was pretty sure what it was. Once he performed the cystoscopy, I believed it. When I looked on the internet and saw what a tumor was and what the colors were, it was basically a done deal.  At that point, I was hoping it was stage I given what I had previously read about the treatment and outcomes.

Unfortunately, when my doctor did the TURBT he determined it was stage II bladder cancer, a fairly aggressive tumor. He then said, “This is beyond the scope of my practice. I need to send you to a urologic oncologist.” He sent me down to Lambros Stamatakis at Washington Hospital Center.

Dr. Stamatakis scheduled an appointment with me later that week. My wife and I spent an hour with him in which he described two paths. One would involve taking the bladder out and the second path would be to try and save it. He said, “Until I do additional tests, I won’t know whether you’re even eligible for bladder sparing.”

He performed another round of CTs and a cystoscopy. We had a meeting right after that at which he said, “You’re eligible for our bladder sparing and can do the three-part treatment.  I’ll do another TURBT surgery, a blue light procedure, and take the cancerous tissue out. We’ll also do radiation and chemo. And in addition, if you’re interested in doing this and willing, we’re running a clinical trial. The trial is to combine the three-part treatment with a year’s dose of Keytruda, an immunologic drug.”

Keytruda is approved for stage III and IV bladder cancer but not yet for Stage II. The goal of the trial is to improve the five-year survival rate for stage II which is in the 75% range. In theory, the addition of Keytruda gets a number of cancer cells that wouldn’t otherwise have been captured and in doing so improves the outcomes for the other 25 percent.   

I signed up and joined the clinical trial. It was an easy decision. It’s not like you’re choosing the standard treatment or a clinical trial. It was, “We’re going to do the standard treatment anyway. And on top of it, we’re going to use immunotherapy to see whether that does the job.”

In December of 2021, I went through my second TURBT procedure using the blue light.  In addition to cleaning up the margins on the first tumor, they discovered a second small tumor which they removed. I then proceeded to daily radiation treatments with weekly chemotherapy. The weekly chemo was scheduled on Tuesdays.  Everyone calls it “Taco Tuesday”; I had “Chemo Tuesday.” I only had chemo during the period that I was doing radiation because the chemo was designed to highlight the cancer cells so the radiation could get them.

I started the clinical trial for Keytruda at the same time as I started the radiation, which was in early January of 2022. The Keytruda was to be every six weeks for a year, but I did not make it past September because of side effects that started right after my second infusion of Keytruda.  My thyroid was affected and I was also having digestive side effects, which was not pleasant.  Nonetheless, I stayed on the clinical trial for the next few months hoping that the side effects would go away. 

In April, when they did a third TURBT procedure to assess whether the treatments had worked, the biopsies came back clear. At that point, I was told, “You’re cancer free.” However, I was still experiencing the side effects of the Keytruda, and my bladder was not recovering from the radiation treatments as expected. I like to say beating cancer is half the challenge, the other half is beating cancer treatment.

In mid-July I started getting urinary tract infections that lasted all the way through August.  The infections proved to be antibiotic resistant, which meant that I spent seven weeks on heavy-dose antibiotics. It was pretty miserable. At that point, Dr. Stamatakis suggested, “One of the things we can do to perhaps improve your recovery is surgery to clear out debris. The radiation creates dead tissue, which may be why the antibiotics are not working.”

On September 6, 2022, I had a fourth TURBT surgery to remove the debris. The next day, I landed in the emergency room at Suburban Hospital with a fever and declining kidney function. I spent the next five days in Suburban on intravenous antibiotics and pain medications, with my temperature fluctuating between 100 and 104. My kidney function was basically down to zero.

They then decided to go around my bladder using something called nephrostomy tubes. Basically, my bladder had become an obstruction, and the infection was the result of urine backing up into my kidneys. The nephrostomy tubes created a detour around the obstruction which allowed my kidney function to come back and the infection to diminish.

The new plan was to leave the nephrostomy tubes in place for about six or eight weeks to see if my bladder would heal. Within two weeks, it was clear I had a non-functional bladder. On December 15, 2022, I had my bladder removed, a radical cystectomy. I now have an ostomy, and I’ve been living with that ever since.

I was now cured of cancer and no longer living with a non-functional bladder, but it took about four or five months to get my energy back. It takes a while, especially after five surgeries over the course of 14 months, chemo, radiation, and three months with nephrostomy bags. I lost 35 pounds, and my appetite was hardly there. But I have now happily put about 20 of the 35 pounds back on.

One of my doctors suggested I engage with BCAN which is how I came across the organization. I read the materials provided on the website as a source of information about bladder cancer and read some of the patient stories. I came across the Survivor to Survivor program, which I did following my radical cystectomy.

I’m glad I did it because there’s one person who I’ve been in contact with several times through Survivor to Survivor and I think I’ve been helpful to her in a number of ways as she’s approached her bladder cancer.

As for advice that I would give fellow bladder cancer patients, I remember when I was at the beginning of treatment someone said, “Make your first shot your best shot, even if it’s going to be a harder route.” It was good advice, even though my three-part bladder-saving treatment of surgery, chemo and radiation didn’t ultimately result in saving my bladder.  I also think it is important that you don’t let cancer define your life. Don’t let it control you. Live your normal life as much as you can, and don’t be afraid to talk about it or be embarrassed by it. Because when you talk about it and you share it with your friends and your family, they’ll provide support. That’s important.