Don’s Story: “Thanks to a totally unrelated cardiac MRI, my bladder cancer was caught before it could do further harm.”

Don Hopkins was taken by surprise when his prostate cancer diagnosis unexpectedly uncovered bladder cancer as well. Despite the initial shock, he approached his diagnosis with determination and readiness. Don has faced significant challenges during his bladder cancer journey, but he considers himself fortunate that it was detected early.

At the age of 68, my PSA (Prostate-specific antigen) levels presented a worrying spike so my primary care physician sent me to a local urologist.  He initially diagnosed me with an enlarged prostate, but he soon ordered a biopsy, revealing a low-grade cancer confined to the prostate.  

At this point, he recommended surveillance rather than removal of the prostate, which was also an option I was open to.  No significant changes occurred over the next two years. My prostate cancer remained low-grade.  

But in November 2020, during the height of COVID-19, I started experiencing problems with fully emptying my bladder.  I immediately thought this was caused by my enlarged prostate.  

The next month, this problem persisted, so I conferred with my urologist via Zoom and he prescribed a medicine to help me empty my bladder. This seemed to work after a few weeks so I felt that all was well.  

Separately, my cardiologist had ordered a routine MRI three months after my urology issue for regular monitoring.  

When the MRI was reviewed, it showed that my heart function was good, but it also captured a thickening of my bladder wall.  This information was passed to my urologist who immediately scheduled me for a cystoscopy.  

I went in, and during the scope, my doctor advised me that I had three or four cancerous tumors in my bladder. Although it came as a shock to me, I asked him “Okay, what’s next?”  

After two weeks, he performed a transurethral resection of my bladder tumor (TURBT), where he removed all visible tumors and sent them to the lab for analysis.  

The pathologist assessed the tumors to be high-grade non-muscle invasive cancerous tumors confined to the bladder. At this point, I lost confidence in my local urologist as I felt that he should have diagnosed my cancer thre to four months earlier.  Had I not undergone the MRI, my cancer would have certainly multiplied undetected.  

So, I decided to engage with a urologist at a reputable cancer center in Tampa, Florida. Within a month, he quickly performed another cystoscopy to assess the results of the prior TURBT.  He was surprised to see that the tumors had quickly returned to my bladder.  

Within a few weeks, I underwent another TURBT, and a month later, I began BCG infusions covering six weeks.  As many have heard, BCG works for some and is less successful in others.  I did complete a second round of six BCG treatments but in my case, it did not halt future tumor growth.  

So, because my tumors were somewhat aggressive, my urologist recommended that my bladder be removed due to the high threat of muscle wall invasion. 

Frankly, upon hearing that, I told my doctor to schedule the surgery.  All I had to do now was decide which diversion method to use.  I chose the ileal conduit and for me, it was a simple choice. 

In short, I’m currently 73 years old, so I wanted a system that was easy to operate. Plus the presence of an ostomy appliance beneath my shirt was no big deal to me.  Furthermore, it seemed to me that the neobladder approach demanded a lot of physical and mental work to reestablish muscle control over urination.  Frankly, I didn’t believe I could establish full control and didn’t want to deal with potential leaks.  

I want to emphasize that one’s decision on the diversion method is unique to each individual.  I’m not making any recommendations for others in this boat. Select the one that you feel comfortable with.  

The next stage was surgery. The recovery in the hospital went well. In fact, I got a 2 for 1 special.  Since my doctor was operating in the general locale, he also removed my prostate – a common practice. Of course, I had agreed to that beforehand.  

Now, post-surgery, I was determined to get out of the hospital as soon as possible and did everything the nurses told me to do.  As a result, I was discharged on day 5. I was ready to get on with life.  Yet, the appliance changing process or re-application of the urostomy bag was only shared with me on the day prior to discharge.  

This prompted a lot of anxiety in me. So should you be in a similar situation, I strongly recommend that you ask the ostomy nurses to train you while you’re still in the hospital and have the chance to ask questions.  Once settled back at home, the home health care nurses who visited me twice a week trained me in this critical task.

Listen to a Podcast: Bladder Cancer and Ostomies

A few days after I returned home, I was able to log in to my patient records and was able to review the pathology report from my surgery.  To my surprise, the stage of my cancer had risen to T1, indicating that a tumor or tumors had impacted the connective tissue of the lamina propria – just short of the bladder muscle wall.  

Additionally, some of the tumors were graded as “in situ”, which means they were flat tumors attached to the inner lining of the bladder, and highly likely to return or get worse.  Yet, my overall situation was still categorized as non-invasive but only because it had not invaded the muscle wall of the bladder. The other good news from the pathology report was that there was no evidence that the cancer had metastasized to other organs or lymph nodes. Of course, I was ecstatic to hear that news.   

I discovered BCAN via brochures and handouts at a patient library at Moffitt Cancer Center. These pamphlets were extremely informative, providing me with greater detail about my bladder cancer. Within these documents, were notices about future internet/Zoom discussions, which I noted and registered as a participant. 

Then, I quickly made a point to sign up for BCAN emails and updates. I’ve learned so much more about myself and those with other bladder challenges. This information, among others, is invaluable to bladder cancer patients and survivors. None of this would have happened if it were not for my first exposure to BCAN brochures.

Today, my follow-up routine requires me to undergo a CT scan of my chest/thorax, abdomen, and pelvis regions every six months to look for any new tumors or abnormalities, plus some blood tests.  I simply keep my fingers crossed and hope for the best.  But thanks to a “fortunate” totally unrelated cardiac MRI, my bladder cancer was caught before it could do further harm.