My Ongoing Bladder Cancer Journey

Last updated: June 2022

On May 20, 2020 I was admitted to a Miami hospital with ischemia colitis. While I was there, I was asked if I wanted the cystoscopy that had been scheduled for the previous March but was never performed due to Covid shutting everything down. I agreed to it, thinking that I just wanted to get it over with.

How things began

The previous fall, my NYC gynecologist saw some microscopic trace blood in my urine and thought I should get another urine test which I did after I flew down to Florida. The doctor there said the same thing - that it was probably nothing - but she sent me to a urologist who said the same thing but wanted to do a cystoscopy and cat scan just to make sure. So I finally had the cystoscopy on a Friday while in the hospital and woke up with a catheter and the news that she saw something she didn't like and that it had to be biopsied.

Biopsy revealed something more serious

The next day the GI doctor came and said I needed a colonoscopy, so with the catheter, I had to do a bowel prep. The colonoscopy was on a Sunday, and I had to wait to get the results of both tests. My colonoscopy was clean but on May 27th, my concierge doctor came to tell me that my bladder biopsies were malignant. I was in total shock as I never had any of the more tell-tale symptoms of this disease. I was discharged the next day but had to return in 4 weeks for another TURBT to see if it was muscle invasive. This time I went home with a catheter and returned to the hospital four days later to be told that I had high-grade muscle-invasive bladder cancer.

I was healthy, why me?

I am someone who ate right, didn't smoke, was not overweight, was a woman, but was exactly the average age of those diagnosed with this disease. The only symptom I had was that I had lost 15 pounds without dieting and was extremely happy about it although some people thought I looked too thin. It never occurred to me that I could have cancer. I was gluten-free, dairy-free, and stopped eating red meat when I was 25. It made absolutely no sense.

Finding a provider I could agree with

After doing tons of research, and speaking with several doctors, all of whom had different ways to perform the surgery, we decided to go back to New York and to choose one of two doctors there. The surgeon in Miami wanted to do a cystectomy and leave me with a bag. When my husband asked him how many women he had operated on, he said about 20 in his whole career. At that moment, my husband decided that we would return to New York. One highly respected doctor in New York suggested a neobladder while the other one suggested an Indiana Pouch.

Choosing chemo took a lot

I was immediately hooked up with an oncologist from Sloan Kettering who worked on Long Island where we were based. The protocol was to have four cycles of chemo before surgery. It was amazing that I sailed through the chemo with only severe fatigue for a few days afterward. It turned out that I had a mutation in the tumor that researchers claimed responded very well to chemo. Instead of having surgery afterwards, the surgeon I selected from a different hospital said I was cancer free after another TURBT, cat scan, and MRI. He also said that he "owned me," because I would have to be tested every two months.

The surgery that led to a serious decision

That was back in November 2020. To say I was relieved was an understatement! However, after almost a year of all negative tests, the surgeon found something he "didn't like" in my bladder and after another TURBT, found that I now had stage one high grade bladder cancer. This led to six weeks of BCG treatments, and now, in two weeks, I will have another session in the operating room to determine if the cancer is still there. If it is, I will be facing the life-altering surgery that many of you have gone through, only this surgeon is suggesting the Indiana Pouch for me. If the cancer is gone, then I will go on maintenance BCG. So, as you can imagine, I am a nervous wreck. Every time I sit down to pee, I pray that the cancer is gone so I can continue to pee the "normal" way.

Harsh realities to deal with

However, my doctor has said that the fact that this started as stage two high-grade cancer means that if the BCG didn't work, it probably never will, and my best shot at survival is to have the surgery. So that is my tale of woe (including that I gained the 15 pounds back due to my concierge doctor in Florida putting me on Lexapro to help me cope with this diagnosis).

Grateful for my team but..

My only consolation is that I think I have great doctors here in NY. However, having these health issues, along with our isolation due to Covid everywhere, has made the last two years so incredibly difficult. I just pray everyday that the BCG has done its magic. I also understand that this journey never really ends so I am doing my best to live with it. After all, there is no other choice, as you all know.

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