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What I learned beating bladder cancer

It’s gone. God willing, it’ll never be back.

In a recent advertising campaign, Baylor Scott & White declared: “Cancer hates us.” That’s the kind of partner I wanted when I fought a life-threatening disease. It’s the kind of partner that helped me get to where I am today, cancer-free.

Last August, I expelled an alarming amount of blood when I went to the bathroom. I shrugged it off as a possible urinary infection or kidney stone. I described the symptoms to my first urologist. He slapped me on the back and said, “Hey, it’s cancer until we prove it’s not.” Gulp.

A CT scan showed a sizable tumor on my bladder. It was removed during a quick outpatient procedure and biopsied. The diagnosis: small-cell bladder cancer, a rare (less than 1% of cases) and lethal malignancy. When I researched the disease, the studies for this form of cancer kept screaming two words at me: poor prognosis. It felt like a death sentence.

I shared my diagnosis with my adult children and siblings. They all know how to use Google and came across the same grim outlook and shared my alarm. I stopped telling people the nature of my cancer.

My best chance of success was chemotherapy followed by bladder removal — as soon as possible.

Although there were a handful of U.S. health systems with national reputations in dealing with small-cell cancer, I never doubted I would receive treatment at Baylor Scott & White. As an employee, I knew the System had the largest hospital-based cancer program in Texas. Size and expertise were paramount.

I had to move quickly. I had to decide whether I wanted surgery or to take my chances with radiation. If I chose surgery, I had to pick one of three types. I received my diagnosis on Friday, Oct. 18. After a frantic weekend of research, I knew what I wanted to do. My best chance of success was chemotherapy followed by bladder removal — as soon as possible.

“Explore."

Related: Why cancer hates believers like me

Next, I needed a team. I wanted a surgeon who had done a lot of bladder removals with good outcomes. That turned out to be urologist W. Scott Webster, MD. I also needed a top-notch oncologist. That was Texas Oncology’s Thomas Hutson, DO, who has an international reputation as an expert in urologic cancer and works extensively with small-cell cancer patients.

One anxiety-filled week after my diagnosis, I was in Dr. Webster’s office. He studied my CT scan. I asked the question that had weighed heavily on me for days: “What’s my prognosis?” I dreaded the answer.

“Excellent,” he said.

I felt like I could exhale for the first time in a week. Dr. Webster said it appeared the cancer had not spread beyond my bladder and chemotherapy might not be necessary. He would operate and the pathology report would dictate what happened next. 

I grabbed the first available surgery slot. One week before Thanksgiving, I had my bladder and prostate removed. Over the next five days, my goal was to walk one more lap around the hospital wing than I did the day before. It was harder than any workout I ever experienced. Two weeks after discharge, I was walking three miles a day. After six weeks, I was doing 30 minutes on the elliptical machine and light weight training.

Living without a bladder became my new normal. But I was still living. That was the point.

The pathology report revealed Stage 2 cancer, meaning the cancer had invaded the connective tissue in the muscle wall but appeared not to have spread to the lymph nodes or elsewhere in the body. A PET scan confirmed the pathology report.

Dr. Webster said I could forgo chemotherapy but doing so with small-cell cancer is “like juggling with knives.” I can’t juggle at all, so I played it safe and chose chemo. There were four 21-day cycles. A subsequent CT scan proclaimed I was cancer-free.

Here is what I learned about cancer during my journey.

Don’t calculate your prognosis based on cancer statistics.

You are not a statistic. About 1.8 million people will be diagnosed with cancer in the U.S. this year. Every one of those diagnoses will be different. You are a sample of one. Some cancers are like birds that take flight and move swiftly (Stages 3 and 4). Others are more like turtles (Stages 1 and 2). The Stage 2 bladder cancer five-year survival chances are 70%. Had the cancer spread to my lungs, liver or bones, that rate would have dropped to 5%. Again, those are statistics and don’t take into account my form of cancer.

Remember, you know yourself best.

Doctors don’t know every detail of your situation and what you value most. You have to do what’s best for you. You will have options. What’s your best chance for survival? What’s your tolerance for uncertainty? What treatment can you endure? What outcome can you live with?

I could have chosen radiation, but bladder cancer has a high incidence of recurrence. The only certain cure is to remove the bladder. Having the small-cell variety clarified my decision-making. The organ had to go.

Don’t delay.

A cancer diagnosis can be overwhelming and treatment choices can seem daunting. But procrastination and denial of your condition can be lethal. Act swiftly to assemble your care team, consider your options and get started on treatment.

Find an experienced surgeon you trust.

If you chose surgery, pick someone who has a lot of experience and success in doing what you need done. Dr. Webster fit that bill for me. The information is out there if you seek it. A good track record is critical.

Help your doctors work together.

The tendency is to take for granted that your medical records are being shared and that everyone is on top of your treatment. However, healthcare can be complicated. Every member of your healthcare team wants what is best for you, but it’s easy for little things to get lost in the shuffle.

I always made sure that my doctors had up-to-date records and scans prior to my appointments. Sometimes they didn’t. Without them, an office visit can be a waste of time for you and your doctor.

Chemo is not necessarily a nightmare.

Everyone reacts to chemo differently. Even you can react differently after each cycle. Your response depends on many factors: the drugs, your physical condition, your age, your diet and so on. In my case, I had some hair loss (it’s growing back) and an oddly persistent case of hiccups after each treatment.

The anti-nausea drugs administered with the infusions were remarkably effective. I drove home for 45 minutes after each treatment. My routine of competitive tennis, cardio sessions and strength training was uninterrupted (in fact, it was recommended). I never missed a day of work.

But this won’t be the case for all chemo patients. My treatment was about mopping up residual cancer cells rather than trying to shrink tumors, so perhaps I got off easy. But my chemo experience is not uncommon.

Related: Why cancer hates warriors like me

Find a community.

People who have gone through what you are going through can teach you a lot. I get a daily email with the new posts from a bladder cancer survivor website. People dispense advice, offer each other hope and share tips on products. The Baylor Scott & White Charles A. Sammons Cancer Center in Dallas has a monthly support group for patients like me. You can go it alone, but many cancer patients and survivors find community to be encouraging and empowering.

Baylor Scott & White got me through this. I had a nurse navigator who set up my initial appointments and shepherded my medical records to the right place. I declined repeated offers of a care coordinator. I have a FitSteps for Life physical therapist free of charge for the rest of my life. My treatment was efficient, evidence-based and safe despite emergent COVID-19.

It was a blessing to have a provider who hated cancer as much as I did. We conquered it together.

Are you or a loved one facing a cancer diagnosis? Find expert care and support today.

About the author

Steve Jacob
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Steve is a senior marketing and public relations consultant for Baylor Scott & White Health. He spent nearly four decades in newspaper and magazine editorial and business management and is the author of two books on healthcare reform. He was also the founding editor of D Magazine's D Healthcare Daily.

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What I learned beating bladder cancer