Robert’s Story: My Mind Was Racing to the Darkest Places I Could Have Ever Imagined

February 10, 2021 is a day I will never forget. 

This was the day I was told I had abnormal cells and growths in my bladder, according to the cytology report and cystoscopy.  I was devastated, and my mind was racing to the darkest places I could have ever imagined.

March 22, 2021, I was scheduled for a TURBT to determine the nature and stage of the tumors/growths. When the pathology report came back, it said muscularis propria present, which means muscle invasive.  There was also an in situ tumor that was removed during the TURBT.  My urologist wanted me to have another TURBT, but something told me my situation was bigger than having another TURBT.  When searching online for information about muscle-invasive bladder cancer (MIBC), I had read through the BCAN web site and the research and other stories inspired me to keep going. I continued my research and came to find that the gold standard of care for MIBC is radical cystectomy.  I was again floored with this news and confirmed the diagnosis with a surgeon at Memorial Sloan Kettering.  However, since the standard treatment had not changed in 30 years for MIBC, I wanted to find a surgeon who believed in bladder preservation.  Enter Dr. James McKiernan of Columbia Presbyterian/NYP. Editor’s note:  Dr. McKiernan also serves on BCAN Scientific Advisory Board).

I met with Dr. McKiernan on April 20, 2021.  He came highly recommended from a very good friend who has great connections in the medical field, specifically oncology. Dr. McKiernan was the most compassionate and understanding doctor I have ever encountered.  He did not rush the visit but rather wanted to know about me before we dove into the specifics of my situation.  He made me feel very comfortable and at ease.  We spoke about bladder preservation and whether I would be a good candidate for it.  He decided I was in great physical condition and met the criteria for bladder sparing therapies.

This was great news! I was to have another TURBT to maximize the removal of cancer in my bladder wall.  The plan was to have a TURBT and then four cycles of neoadjuvant chemotherapy. The second TURBT was May 12, 2021, and I remember having to wait for the pathology report and being beyond nervous, hoping that the TURBT may have removed the cancer that remained in my bladder.  It did not, but that was wishful thinking on my behalf. 

The next step in the journey was neoadjuvant chemotherapy. I had four cycles.  Before having the first cycle, I researched everything I could about chemotherapy.  It was daunting, to say the least.  I was put on a regimen of cisplatin and gemcitabine, a split dose. That meant two weeks on and one week off for four cycles. The thing that I feared most was the nausea and vomiting as cisplatin is one of the strongest platinum chemotherapy drugs. To my surprise, I went through all four cycles with no side effects at all.

The infusion nurses were all so very pleasant and helpful.  I looked forward to my infusion dates, bringing my iPad for entertainment and my lunch. I was fully aware that this is not what everyone experiences.  At the end of my infusion therapy, August 6, they had me ring the bell upon completion of treatment.  I will never forget that day either, as all the staff lined up and congratulated me on completing my therapy. Now it was time for an MRI and CT of the chest to see if the cancer had moved to other parts of my body.  The CT scan of my chest came back negative for any carcinoma and the MRI of my abdomen and pelvis came back with only a 1.5cm spot. I was elated to see no signs of cancer in both tests but knew the final biopsy was the real telling factor as to whether I was NED (No Evidence of Disease).  

On September 1, 2021, I had my final biopsy. I remember waiting for the pathology report, hoping, and praying for the best outcome. It was a painful and anxiety-filled two days before it arrived.  Upon opening it, I found that I had one .2x.2x.2 cm in situ flat tumor, which was not muscle invasive. It was only in the lining of my bladder.  I was unsure if my surgeon removed it, so I sweated it out until I had my follow-up visit with Dr. McKiernan the following Wednesday, September 8, at 6:45 pm.  When we met, he congratulated me on achieving T0 status clinically.  The chemotherapy had removed all of the cancer in the bladder muscle.  I am now scheduling my next six weeks of BCG therapy since I had an in situ flat tumor remaining at the time of the final biopsy.   

The journey has been long and, at times, very intimidating.  I am the type of person who researches everything, especially cancer in my body. I am happy to report that I am now NED and will be following up with Dr. McKiernan and his staff regularly for the next five years.  It will be at that point my intervals of cystoscopies and scans will be only once a year.  I am forever grateful to God, Dr. McKiernan and his staff, my oncologist and infusion nurses, and mostly my family for being my support system throughout this entire journey.  I hope anyone newly diagnosed with MIBC will look to see if bladder preservation is an option as this is becoming more and more popular.  I am heartened by the fact that thanks to organization like BCAN that fund bladder cancer research, more and better treatments will be discovered for bladder sparing therapies. A radical cystectomy is a life-altering surgical procedure that I was not ready for at this point in my life.