Bladder Cancer Survivor

Remain Hopeful Through the Ups and the Downs

Curtis Garbett was only 39 years old when he was diagnosed with Stage IV bladder cancer. With no family cancer history, the diagnosis was shocking. Throughout many successes and some disappointments during treatment, Curtis took a collaborative approach with his oncologist. A strong and passionate advocate for others with bladder cancer, he created the Crush It for Curtis Foundation to raise awareness and educate others about bladder cancer.

 

In 2015, I started urinating more frequently and was feeling more tired than usual. I didn’t think it was very serious, so I delayed going to the doctor. After the symptoms persisted for two months, I asked my primary care physician about it at my yearly checkup. The doctor ordered bloodwork, and the results showed my kidney function was really high. My doctor set up an appointment with a nephrologist for the next day.

The nephrologist said I was in acute renal failure and needed to go to the hospital right away. Not realizing the seriousness of my condition, I asked him if it could wait until Monday because I had a lot of plans scheduled for the weekend. He said absolutely not. I went to the hospital where they did an ultrasound and discovered that I had a tumor in my bladder the size of a softball.

I broke down and cried. All of the unknowns scared me. I wasn’t sure how I got this because I had no history of cancer in my family. I called my mom immediately after they found the tumor. I knew my family would be a huge support for me, but I had no idea what I was about to face.

On the following Monday, I had a transurethral bladder tumor resection (TURBT) to remove most of the tumor. On Tuesday, I had a second TURBT to try to remove any remaining tumor cells left in my bladder. The doctor was pretty confident he got all of it but cautioned me that there was a one percent chance that microscopic tumor cells could have escaped during the surgeries.

My health was great for almost a year. I had checkups to make sure nothing returned. In December 2015, my urologist reviewed the results of a routine CT and saw a spot in my lung area and in the retroperitoneal area. That’s when I was diagnosed with Stage IV bladder cancer.

I went into a daze. How could I go from having no tumor to Stage IV? I must have fallen into that one percent. I was sent to a university hospital with a strong genetics program because it was considered pretty rare to develop bladder cancer at 39 years old. I had a biopsy to remove the spot found on my lung. The medical oncologist sent me for genetic testing, and I learned I have the FGFR mutation.

I did the standard of care 12 weeks of chemotherapy. I tolerated chemotherapy well and had some fatigue, but I didn’t have the nausea and vomiting most people think of with this treatment, and I didn’t lose my appetite. Most likely because I was also on a steroid.

My medical oncologist recommended I see bladder cancer specialists at a nearby well-known hospital. When I finished chemotherapy, they determined my tumors had melted away, and they saw no evidence of cancer. At the time, I felt like it was a miracle.

I went another year without a sign of cancer. Then in April 2017, a CT revealed another spot in my mediastinal area. Apparently, only one out of ten people has a complete response to chemotherapy for bladder cancer. So, although I thought I had beaten the odds, it turned out that I had not.

My oncologist and I discussed the available treatment options. The doctor recommended a clinical trial that was testing an immunotherapy drug in combination with a targeted therapy agent that was an FGFR inhibitor. I was accepted into the trial and started receiving this treatment. I had some unusual side effects. My eyebrows fell out, and my upper eyelashes grew very long. I had a better response rate than most, and by the end of the trial, I had a 100 percent response rate. However, the cancer returned three to four months later as tumors smaller than a pinky finger nail in my mediastinal area.

I felt very discouraged. I asked my doctor, “Now what?” And, “Are we going to run out of options?” The doctor reassured me that we had lots of options to explore. I couldn’t return to the trial, but I did go back on the immunotherapy drug that had been in the trial. At the same time, my doctor worked behind the scenes to get me approved for a drug that was only approved for kidney cancer. He was successful and added that new targeted therapy to my medication plan, which still included the immunotherapy. The biggest side effect of this treatment is fatigue.

As of May 2018, my tumors were shrinking with good results. The plan is to keep me on this combination and continue getting CTs every three months to check my progress.

Bladder cancer has a stigma and more awareness is needed. It’s the fourth most commonly diagnosed cancer today, yet people don’t talk about it. To help raise awareness, I created the Crush It for Curtis Foundation.

Don't wait to get checked out if you notice more frequent urination or blood in the urine. Find a support group, whether it’s close family and friends or online. It’s good to ask other cancer survivors questions. Advocate for yourself, and always ask questions about everything, especially genetic testing and next generation molecular testing. It’s important to have a good relationship with your doctor. Researchers are discovering more about bladder cancer every day, and more new treatment options are available than ever before. Remain hopeful.

 

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