Steve’s Journey: From Agent Orange to a Radical Cystectomy

My journey with bladder cancer began in October 2017 at the age of 70. Being a Vietnam War veteran exposed to Agent Orange, I cannot help but think that may have played a role in my diagnosis.

Before finding out that I had bladder cancer, I had mild symptoms. There was some pain, but the frequent urination and inability to control it prompted me to see my primary physician. My physician thought it would be best for me to see a urologist for further observation – the urologist suggested a cystoscopy. Much to my surprise, the cystoscopy showed that I had a high-grade carcinoma situ and it was non-invasive. That was the last bit of news I ever would have expected to receive. After many tests, I started my first round of BCG treatments a month later.

My BCG treatments started with six rounds over six weeks. I did experience fever and fatigue due to the treatments; even though it was draining, it was nothing compared to what others may have gone through. On April 18th, 2018, six weeks after BCG, my doctor did my check and performed a TURBT procedure. Everything looked fine. I was now on a routine. Every three months I would go in for a cystoscopy. By the end of 2019, the cancer had returned. I was back on BCG treatments and had another TURBT.

A year and a half went by, and all my cystoscopies came back clean. I was elated. In the summer of 2022, I went to see my urologist and was given the news that he had retired. What was I to do next? He was the only doctor taking care of me. I eventually found a new VA hospital in Milwaukee, Wisconsin, Clement J Zablocki Veterans Affairs Medical Center, and right away I noticed how differently they did things. They did two things differently than my previous clinic.

One thing that the new VA hospital did differently was to perform a cytology. After they reviewed that with my urinalysis, they discovered something suspicious and had me come back and do a Blue Light cystoscopy.  I do not know many veterans’ organizations that do blue light, but I was happy to find one that did. Blue light cystoscopy is much more detailed and was able to see that the tumor had grown and was now muscle invasive.  The tumor had spread to the ureter and the lymph nodes and was now high-grade, invasive T2. It had grown into the wall for the first time in five years. I could not believe what I was hearing.

I had been going through the same routine for so long that I was confident I would start back on my BCG treatment, but little did I know that things would change. The doctor said, “No, you had BCG twice and it did not work.”

To my surprise, my new team recommended a radical cystectomy. I was not prepared for that, but I knew it was something I had to do. I had to have my bladder removed to save my life. On September 1, 2022, I had a radical cystectomy with an ileal conduit. I chose the ileal because I thought it was my best option. I wear a Stealth Belt every day to keep it there and protected.

My urologist recommended that after I heal from the surgery, I need to see an oncologist to discuss further treatment. I was all set to walk the new path in this journey confidently, but three weeks after surgery, I had a stroke.

I began my treatment for ureteral cancer which was discovered during my radical cystectomy surgery. Due to my stroke, I was delayed six weeks before I started treatment which was immunotherapy. I went to oncology every other week for a full year.  The drug I was on was Nivolumab, known in the commercial world as Optivo. Due to my issues with hearing from Vietnam, I was not able to do chemotherapy.  This treatment had just been recently approved by the FDA.

Having a stroke prolonged my recovery but did not stop it. After five weeks of rehab, I am currently seeing an oncologist. We are going to be doing immunotherapy treatments instead of chemotherapy. The reason is my prior health issues due to my exposure to Agent Orange. I will be going every two weeks for a year. Hopefully, this is going to work.

On September 19, 2023, after an almost seven year battle, I was cancer free. I have had two scans and both are clear. I have to have scans every three months due to the type of cancer. The battle is not over but the outlook is positive.

This road has not been easy, but I have learned a lot about understanding bladder cancer and how dangerous it can be. I have learned about the signs and things you need to look out for, and my mission now is to ensure that veterans of the Vietnam War truly understand this is not something you neglect. I am very involved in VFW, where I am a district commander. As district commander, I am part of the leadership team in the state of Illinois. One of the things that I am doing is working and creating additional awareness and getting information out there from credible, reliable resources like BCAN. It’s important that patients feel empowered with good information and that they know they are not alone.

Finding out I had bladder cancer changed my whole life. It was mentally taxing and could have contributed to the stroke because I had a lot of stress. Being able to tell my story and have a voice can help someone who will hopefully not experience the stress I did. I am very thankful to my wife, a cancer survivor, for sticking with me. She was nothing short of tremendous from the beginning.

As I am still recovering and getting stronger daily, there are better days ahead.

In conjunction with BCAN, we are getting a message out to those who served in Afghanistan and Iraq to be aware that the existing Pact Act does not cover bladder cancer as a presumptive condition for burn pit exposure. This is Agent Orange all over again, but our goal is not to let that happen and to get the VA to approve it. I, along with BCAN, am reaching out to service organizations, and social media website veterans to have them complete a survey if they served in these locations.

As a Past District Commander of VFW, this is now my goal, to make sure these military personnel are given the benefits they deserve. It is my mission. It is a terrible mistake to leave this off the Sergeant First Class Health Robinson Honoring our Promise to Address Comprehensive Toxic Act of 2022. When I do the Bladder Cancer Walk, I walk for Veterans. 

If you are a veteran and believe that your bladder cancer is a result of your military service, we encourage to you contact the Veterans Benefits Administration and file a claim.  For more information on how to apply, please listen to our short Information About Veterans Benefits and Bladder Cancer podcast.