Jon’s Story: “I encourage folks to do their own research.”

It began with subtle signs dismissed until a pivotal moment sparked urgent action. From diagnosis to treatment, setbacks to triumphs, Jon Treffert’s story encapsulates the essence of perseverance and the transformative power of modern medicine. Here is Jon’s story about navigating his bladder cancer journey through uncertainty, hope, and the relentless pursuit of healing:

In retrospect, one thing that I would encourage others to do is pay attention to changes in their urine and follow up immediately. I observed some darkening in mine – it was turning dark yellow over several weeks. I did not attribute it to anything specific and was not overly concerned because I wasn’t at all familiar with bladder cancer. I was not experiencing pain while urinating, but I did start to have some slight flank pain, and then one day I saw redness in the stream and realized it was blood.

I thought the pain I was experiencing was digestive-related. The only time I had seen red in my urine before was after I passed a kidney stone. On September 21, 2023, my wife insisted that I see my general practitioner. He did a urine culture, and then immediately arranged an abdominal CT without contrast. Later that afternoon, they reported bladder wall thickening and hydronephrosis of my right kidney. They could not rule out bladder cancer, and I was referred by my general practitioner to a urologist. After seeing the imaging report, the urologist ordered a cystoscopy, which was done the following day. It was then evident that there was a tumor in my bladder.

The urologist scheduled me for a TURBT surgery within the week. However, it turned out that my urologist and his hospital were not in my health insurance network. I could not afford the surgery out of pocket, so he referred me to a urologist at the University of Tennessee Medical Center, which was in my network. My UTMC urologist had a vacation scheduled and he referred me to a colleague who performed the TURBT on October 6th.

The surgeon came out after the procedure and told my wife that he had expected a 30-minute procedure, but it required much more time to resect the tumor. The surgeon also placed a stent in my right ureter because the primary tumor was at the junction with the ureter and was blocking flow from the right kidney. The pathology came back as muscle invasive papillary urothelial cell carcinoma. On return from vacation, my urologist indicated that his recommendation would be a radical cystectomy. I led software development for a proton therapy system in Knoxville and was aware that trimodality therapy (TURBT, adjuvant chemotherapy, and radiation) was showing comparable results while sparing the bladder.

I first met with my medical oncologist on Oct 26, 2023, and he scheduled imaging to see if the disease had spread. On October 30, I had a lung CT, pelvic CT with contrast, and pelvic MRI with contrast. The anatomic imaging came back negative. The initial read was that my cancer had not spread.

I had decided to retire on October 31 to focus on my recovery. I applied for Medicare Part B in Tennessee, with few exceptions, proton therapy is only reimbursed for Medicare patients.

I also led software development for PET/CT in Knoxville and my oncologist scheduled my very first PET/CT scan for November 10. It showed that the disease had spread to two nearby pelvic lymph nodes and my disease was restaged as locally advanced stage III/IV muscle invasive bladder cancer which changed the standard of care to cisplatin-based chemotherapy.

My Medicare application was delayed in processing and while I waited for approval, I was looking for alternate treatment options and clinical trials. I discovered a promising new treatment for MIBC that had been fast-tracked for FDA approval. The new approach combined Keytruda and Padcev. Keytruda boosts the body’s immune response by inhibiting a signal to T-cells, while Padcev is a new type of therapy (antibody-drug conjugate) that targets a specific protein found in bladder cancer cells, delivering a cancer-killing drug directly to them. It was approved as a first-line treatment in December. By then, my Medicare Part B was approved and I began treatment on December 11th that same year. Coverage with Medicare B and Part C Medigap Plan G has been excellent.

After my third treatment cycle, I was scheduled for surgery to have the stent removed from my right ureter. My urologist did the surgery and came back very quickly with a smile on his face. My right kidney function was great, so there was no need to keep the stent. He also saw no evidence of recurrence of the primary tumor. That was huge news.

A few weeks after that, I had a PET/CT follow-up scan, and there was no evidence of distant metastasis. My previously active lymph nodes were no longer showing significant uptake. On Valentine’s Day 2024, I drew blood for a Signatera test. Signatera is a molecular residual disease test, which looks for circulating tumor DNA. It takes several weeks before the first test results come back because they design the test based on genetic analysis of your tumor.

On March 6, I learned that the Signatera test was negative – no evidence of circulating tumor DNA! My oncologist was not ready to declare victory just yet – treatment will continue at least until another PET/CT and Signatera come back negative.

Since my diagnosis, I have been doing a great deal of bladder cancer Google searching. Facebook took notice and placed some BCAN information in my feed – and I was glad to see it.

I encourage folks to do their own internet research to be aware of the most recent treatment options for discussion with their care team. I learned that patients can request free access to journal articles. These are exciting times for bladder cancer.  You can follow my journey here.