2016 was the scariest year of my life. I urinated blood around Christmas in 2015, and a CAT scan in February 2016 found a tumor. I had a cystectomy on April 1 and the results were determined to be an aggressive cancer. Next, was another cystectomy which saved me from going through chemotherapy – and doctors felt surgery was proper first step.
On April 7th, after my first surgery, I called Memorial Sloan Kettering Cancer Center (MSKCC) and the first person I spoke to — within one day — had scheduled an appointment just three days later. I was treated at (MSKCC) in New York and their staff is stellar. To say I was scared is an understatement — but the doctors helped relieve my fears.
Initially I was set for chemotherapy, but one day before it was to start, MSKCC called and said no. My first thought was “it’s worse than they thought.” Instead they wanted to do another cystectomy, to be sure of the invasion. After the cystectomy, the decision was to go straight to either a neobladder or BCG treatment. I weighed the two choices. I was 58 years old, a new grandfather and scared. My wife and I stayed up nights, worrying. Should it be surgery or BCG?
After three weeks I had a decision to opt for the neobladder. This decision only happened after much reading and research. On July 1, the operation took place and I awoke with a new bladder. My first question was any other cancer seen? How was my prostate and lymph nodes? There was no other cancer and they were right — no chemotherapy was needed. That was significant — because of these special doctors my future health won’t be affected by chemotherapy.
I made sure to ask questions about post-operative concerns. I learned one problem is infection and after 5 days, I developed an infection in my incision, so I was back in the hospital for 3 more days. I am glad I knew ahead of time that something like this could happen. MSKCC released me again and I was staying close by hospital, but one night I had trouble breathing. But again, from learning in advance about complications, I suspected I had developed a blood clot in my lung. Like the infection, this was an unlikely post-operative complication, but it happened!
So I went back to hospital yet again, receiving great care and after that, I stayed at the Helmsley Medical Tower until August 1st and I returned home to Pennsylvania and rested for another month.
During that month I did lots of walking, and after that I went back to work. I have not looked back as I am now 9 months out and all is still clear from cancer. Although I have continence issues, I am as good as I was before my neobladder.
What did I learn? I learned it’s ok to be scared and mad — and ask “why me?” But my advice is read everything you can and ask every question that comes to mind. Sharing information helps — articles and information shared by others helped me ask the right questions!
Be treated at a major cancer center with specialists in bladder cancer. Get the right doctor. At MSKCC I was never left alone without answers. Stay close to the hospital after discharge for one month. Take 8 weeks off after surgery. This is major surgery and you will be weak for some time. Be prepared for complications and if they happen, go back to where you were originally treated.
Here’s some final advice for people that have not faced bladder cancer. If you smoke, stop smoking. Love your family everyday every minute — forever. Buy secondary insurance like AFLAC cancer insurance. I am not wealthy but twenty years ago I purchased this insurance it allowed my wife and the financial ability to stay in NYC. It is inexpensive premium that saved my life.