Bill’s Story: “I am eternally grateful I discovered bladder preservation.”

The concept of bladder preservation was foreign to Bill Moroney until he received the startling news of a bladder cancer diagnosis following a visit to his family doctor. In the ensuing months, he grappled with a whirlwind of emotions, struggling to comprehend the implications of his diagnosis. Determined to confront the challenge, Bill delved headfirst into extensive research on bladder cancer and sought support from various resources. Despite the initial shock, he maintains that his diagnosis and successful efforts to preserve his bladder has allowed him to live life to its fullest: “I had a great life before bladder cancer.  And, thanks to the support of my wonderful wife and the bladder preservation efforts of a great team of doctors, I still do.”

Bladder preservation was a term I had never heard of early on Thursday morning, February 19, 2015, as I watched in horror as I urinated a bright red stream of blood. In fact, I would not even hear the term Bladder Preservation for another 11 weeks.  But, on that winter weekend in February, I began an adventure with Muscle-Invasive Bladder Cancer (MIBC) that finds me today (January 2024) still with my original bladder and no evidence of the disease since early 2016.

Back on that February morning, I didn’t feel a thing.  I felt healthy.  I just could not believe there was this vivid pool of red in front of me.  If I had sat down to urinate rather than stand that morning, I would never have noticed a thing.  There was no sensation and it never happened again. And, I probably would have delayed treatment until something far worse occurred.  I was lucky.  That morning, my wife, Tracy, and I were headed off for a warm weekend in Florida; so, I decided to just flush the toilet and embrace denial until we got home. 

On our return, I fessed up to Tracy and called our family doctor, Dr. David Patterson. Within two weeks, he got me in to see a urologist at a local hospital and off for a CT Scan. The following Tuesday, March 10th, the doctor told me, “You’ve got a lot of gallstones, but that’s not your real problem. You’ve got what looks like muscle invasive bladder cancer.”

It would not be for another month, April 10th, before the doctors performed a cystoscopy and TURBT (trans urethral removal of bladder tumor) to remove as much of the cancer as they could. During that month, I had a lot of time for tests and quit worrying about what it all meant.  Not a lot of information and I had not found BCAN yet.  I wasn’t sure what to do, so my emotions bounced among embarrassment, more denial, figuring the doctors knew what they were doing, and hoping everything would be OK.

The following Monday, the urologist told me they had removed as much of the tumor as they could, but some was still left. It was diagnosed as T-2, and it was determined that I would need to have my bladder removed.  That’s when it struck me – BLADDER REMOVAL – losing my bladder along with other nearby bits and pieces of my anatomy.  (I was still more than three weeks away from hearing the term BLADDER PRESERVATION.  Remember, this was 2015 and bladder preservation was not the recommended standard of care in the United States for MIBC.)

My urologist recommended starting chemotherapy right away and sent me over to talk to their chemotherapist, which is when warning lights began flashing as I started running into conflicting medical advice.  It was time for me to become more aggressive in exploring my options. 

Cisplatin and gemcitabine is the normal chemotherapy cocktail to address bladder cancer, but as my creatinine levels have always been high, there was concern that giving it to me could harm my kidneys.  The chemotherapist recommended carboplatin and gemcitabine as a substitute.  Subsequently, other doctors, told me that carboplatin substitute would be useless and recommended that I pass on chemo and go right to bladder removal.  After talking to a surgeon, I learned about the alternatives of wearing a bag versus creating a neo-bladder from some of my intestines. And so, I asked the surgeon, “How will you know whether a neo-bladder would work for me?” He said, “I’ll decide when I get inside you.”  Not comforting. 

At this point, I was not trusting the conflicting advice I was receiving.  I stopped hiding and started emailing everybody I knew asking for any information they had.  I received lots of recommendations. A neighbor, who is the chief medical officer for a big healthcare company, told me they sent everybody to a renowned surgeon in Baltimore.  I went to see him for a second opinion, and he also said the chemo recommendation was nuts. “Let’s take the bladder out right now,” he said. “There’s nothing to indicate that you wouldn’t be a candidate for a neo-bladder.”  We scheduled the surgery for mid-May.

Reaching out to friends and friends of friends was probably the best thing I could have done.  I learned about proton radiation as an alternative to surgery from a friend who had had prostate cancer successfully treated with it. I started calling every hospital that had a proton radiation machine and discovered by talking with wonderful doctors and nurses that two hospitals specialized in using proton therapy for bladder cancer – and one was nearby in Philadelphia.

On May 7th, I cold called the office of Dr. William Shipley, Head of Genito-Urinary Oncology in the Department of Radiation Oncology at the Massachusetts General Hospital in Boston.  He picked up the phone himself and spent almost an hour talking to me.  He was the first person who used the term “Bladder Preservation” with me.  The time he spent with me and learning about the possibility of bladder preservation started a process that turned my treatment plans on end in just one week.

Within days of talking to Dr. Shipley, Dr. Patterson called to say friends of his at the National Institute of Health (NIH) had recommended that I talk to Dr. Bruce Kressel, Medical Oncologist at the John Hopkins Kimmel Center at Sibley Memorial Hospital in Washington, DC.  Dr. Kressel had developed a method of administering full-strength cisplatin and gemcitabine chemotherapy via a split-dose delivery process that was easier on tender kidneys like mine.  While I was meeting with Dr. Kressel, he called my initial urologist and asked him if I would be a candidate for bladder preservation.  His response: “Well, yes, if that’s the way he wants to go.”  Yes, it was the way I wanted to go!   I then went to Philadelphia to meet with a team of doctors at Penn Medicine’s Perelman Center for Advanced Medicine to explore the viability of using their proton radiation to kill my remaining tumor led by Dr. John Christodouleas, Radiation Oncologist in the Penn Genitourinary and Urologic Cancer Program.  By the next week – two weeks after hearing the term Bladder Preservation for the first time, and long conversations with Tracy – I canceled my bladder removal surgery and agreed with my doctors to undergo three rounds of chemotherapy at Sibley before starting six weeks of radiation therapy at PennMed.

It was explained that the primary risk of opting for preservation with chemo and radiation was, should it not be successful and bladder removal was still needed, it would be likely that my intestines would have been affected by the radiation to the point that their use to create a neobladder would be problematic.  To me, it was worth this risk to proceed with preservation. 

By the end of May, I had had a chemo port installed at Sibley and an exploratory Cystoscopy at PennMed.  My first chemo treatment began on June 16th.  It was a little surreal seeing all these plastic bags with danger symbols on them plugged into a hole in your chest, but you really get used to it quickly.  I tolerated the chemotherapy well.  I needed a lot of sleep.  I didn’t really lose my appetite, but alcohol tasted horrible.  The only awkward moment during the chemo session was showing up one morning with very (dizzyingly) low blood pressure and being told it would be a good idea to stop taking my blood pressure medication. The good news is that I have not needed it ever again.  Who knew?

My third chemo treatment ended on August 3rd and on August 12th I had another Cystoscopy at PennMed to see how my tumor was doing.  Good news – the tumor had shrunk to such a degree that there was no longer “a coherent target” for the proton radiation to shoot at.  Because of PennMed’s significant experience treating bladder cancer, I elected to stick with plans to begin six weeks of treatment with regular radiation therapy on August 31st.  Twice during this period, I was hooked up to a device that administered a mild chemo dose (Mitomycin 5FU) 24/7 for a week.  Amazingly easy to get used to this thing plugged into your chest for a week.

I’m really glad I stuck with the PennMed program. I think they could not have been better.  Again, I think I was also lucky. I remember over the six weeks of treatment, you get to know the other patients who are on the same schedule you are. We were a mix of prostate and bladder cancer victims.  We were either emptying or filling our bladder before treatment.  I remember telling myself “I’m glad I’m doing this in my 60s and I’m not when I’m as old as these guys.”  But, toward the end of my treatment, I discovered I was older than they were.  As I said, lucky.  Finished my radiation treatment on October 21st and rang the bell. Sent home on Tamsulosin (FloMax) 0.8mg and Mirabegron (Mybetriq) 50mg to help control my urine flow.  Still working.

On January 20, 2016, I returned to PennMed for another cystoscopy and bladder wash.  Everything looked good – no tumor, only scar tissue on the bladder wall – but, they found cancer cells in my bladder wash. They couldn’t tell whether these cells were dead or alive cancer cells, but they wanted to be cautious and give one more treatment.  In February 2015, I started on Intravesical BCG in D.C. with my local urologist, Dr. Edward Dunne, Chief of Urology at Sibley Memorial Hospital.

BCG stands for Bacillus Calmette-Guerin.  It’s an immunotherapy.  Unfortunately, I’m in the 1% of the population that’s allergic to BCG.  After my first treatment, I had a rash that was all over my body. My kidney and liver functions were going crazy.  If you ever start BCG treatments and you get a rash, call your doctor immediately. 

It took about a month for the BCG reaction to dissipate, during which Tracy got to rub medicinal goo all over my body – which under other circumstances could have been fun, but not so much this time.  Once I was back to normal, Drs. Dunne and Christodouleas agreed to start me on a six weekly bladder wash treatment of Intravesical Mitomycin C.  This ended on April 12th without incident.

That May, I returned to PennMed for what would become regular checkups – X-rays. MRIs, and a Cystoscopy.  Everything looked OK – no evidence of disease.  And that’s the way it’s been ever since – seven years and counting.

I have had only one complication arise since and it was not cancer.  The effect of too many probes up my urethra caused minor tearing that resulted in enough scaring to create a stricture that, if left untended, could cause difficulty urinating.  So, on February 3, 2022, I had a urethroplasty performed here in Washington with the scar tissue removed and no subsequent problems. All is good today.

I needed and received a lot of help going through this process.  I eventually found BCAN and they were helpful in terms of explaining what it would be like living with a bag, living with a neobladder, and explaining the various terms to me.  BCAN’s patient stories were also very helpful.  I did a lot of searching and reading on the internet.  But, in retrospect, the biggest help for me was sending out an email to people I knew saying, “Do you know anybody who’s had bladder cancer? Do you know anything about this?” Most of the information I got about living with a neo-bladder or a bag came from talking to patients, and most of the information I got about bladder preservation came from talking to doctors.

I think it is very important to not be shy when talking about things related to bladder cancer – whether it’s about wearing an external bag or a bladder cancer diagnosis in general. Talk to people. Talk to as many people as you can.  If a friend of yours came to you and said, “I’ve got this disease. Do you know anything that could help me?” Would you think ill of them? Would you be ashamed for them? No, of course you wouldn’t. So don’t expect them to be if you come to them.

The second thing is, I wish my doctors would have helped me understand the option of bladder preservation first. That was not my case.  This was 2015, but still, everybody wanted to cut it out until I found two doctors who said to leaving it in could work.  I wish the medical community would’ve been more proactive in terms of talking about preservation. Maybe they are today.  I hope they are.  I feel very lucky to have found out about bladder preservation. I feel lucky that I was healthy enough to have the outcome I did. I feel very fortunate.

My story is not complete without stressing how important the support I received from my wife, Tracy, was.  I could have mentioned her in every paragraph of this story.  I believe this whole year-long process had to have been harder on her than me.  I had the distraction of searching for solutions and experiencing treatment.  While I was being fatalistic about this, she had to worry about being supportive and dwelling on what could happen if all this didn’t work.  During chemo and radiation, while I would sleep through many days, she was left to worry alone.  All our caregivers are angels.  I have been incredibly blessed to have Tracy in my life. I could not have gotten through this without her being with me for every step of this journey.

That May, Tracy and I took off for a quick visit to Iceland with our son and his wife.  And we’ve been on the go ever since.  I had a great life before bladder cancer.  And, thanks to the support of my wonderful wife and the bladder preservation efforts of a great team of doctors, I still do.