Dual bladder cancer survivor finds hope and an accurate diagnosis at MD Anderson

Until January 2020, I had always felt like I had an unspoken agreement with cancer: I’d make good lifestyle choices — protecting my skin, avoiding tobacco and exercising regularly — and it would leave me alone.

I thought we had a deal. Because there’s no history of cancer in my family. I’ve never worked in a chemical factory. And, up until last year, I’d gone more than half a century without so much as a peep out of cancer.

Apparently, though, cancer never got the memo. Because at age 57, I received a bladder cancer diagnosis.

My quest for an accurate bladder cancer diagnosis

My local doctor sent me to a specialist, who said I needed a procedure called a blue-light-aided cystoscopy and Trans-Urethral Resection of Bladder Tumor (TURBT) to properly stage and remove the bladder cancer. This was important, he said, because in about 25% of cases, cancers are not accurately staged. And treatment for stage II bladder cancer differs significantly from that of stage I.

The only problem was that neither he, nor anyone else in Austin, offered that procedure at the time. Only three hospitals in the entire state of Texas could perform it. I asked my doctor which he’d recommend. MD Anderson was one of the two places he vouched for. I thought, “Well, why waste time? I’m going to the best.”

MD Anderson pathologists discovered dual bladder cancer diagnoses

I’m incredibly grateful today that I made that decision. Because when I met with Dr. Ashish Kamat, who performs blue-light cystoscopy at MD Anderson, he revealed that MD Anderson pathologists had reviewed the same slides that my previous doctors had. And, they noticed I actually had two different kinds of bladder cancer, not just one. So, I wouldn’t need the procedure after all.

In addition to the stage I, high-grade bladder cancer that my previous doctors had seen, the MD Anderson pathologists found a second kind called plasmacytoid cancer. It’s very rare and only occurs in about 1% of all bladder cancer cases, but it almost always comes back — and if it does, it’s usually fatal. There is no standard treatment. But in my case, my doctors recommended aggressive chemotherapy, followed by surgical removal of my bladder.

My bladder cancer treatment

It was pretty shocking to hear that my bladder needed to be removed. Up until that point, I’d thought I was perfectly healthy. And the only symptom of bladder cancer I’d had was a little blood in my urine over a two-day period in late November. I didn’t realize that my life needed saving.

Unfortunately, there was no getting around the removal of my bladder. I asked if maybe we could make me a new one, using a 3-D printer or something — or even just not remove it. But Dr. Kamat said we had to throw everything at plasmacytoid cancer, right from the beginning. So, the bladder had to come out.

I wasn’t thrilled, but I wanted to live. I started eight weeks of chemotherapy under Dr. Arlene Siefker-Radtke. Then, Dr. Kamat surgically removed my bladder and urethra, along with my uterus, cervix and all adjacent lymph nodes. During that same surgery, Dr. Thomas Smith III used a piece of my intestines to create a new way for my kidneys to drain liquid waste. I have a small opening now in my abdomen called a stoma. It attaches to a bag I wear underneath my clothes that collects urine.

I still feel some resentment today at having this extra thing to take care of. The urostomy bag is a constant reminder of a hard time I went through that I’d just as soon forget. But caring for it is not really difficult, just tedious. And any annoyance I may feel about it is far outweighed by the fact that I’ve shown no evidence of disease since July 2021.

I’ve also been able to stay active. Just four months after my surgery, I went on vacation with my family in Virginia. We walked three miles on the Appalachian Trail, did some river rafting, and rode horses for two hours. I was a little tired afterward, but had no other issues. So, that was pretty great.

How MD Anderson kept me safe during the COVID-19 pandemic

Cancer treatment can be really difficult, even in the best of times. But when everything is harder due to COVID-19, the caliber of people you interact with daily becomes even more important. I don’t know how they train people at MD Anderson, but everyone who works there is amazing.

I started chemotherapy in early March 2020, right before the pandemic really got going. So, my husband was able to accompany me to my initial consultation and my first chemotherapy infusion. After that, I had to go to appointments by myself, due to the visitor restrictions MD Anderson put in place to protect its patients from COVID-19. But the extra compassion that the entire staff showed me made it tolerable.

Our understanding of the coronavirus was still evolving rapidly back then, so safety protocols at MD Anderson sometimes changed from week to week. But that didn’t really bother me, because it so clearly demonstrated how MD Anderson is on it. They were doing things to protect their patients and employees long before anyone else was. So, I couldn’t have felt better cared for.

During COVID-19, MD Anderson was protective and proactive

I was also impressed by the way MD Anderson proactively — and repeatedly — adapted and responded to the evolving pandemic. In February, I got a call from someone there saying, “We have the COVID-19 vaccines now. When do you want to come get one?”

The sheer logistics of processing that many people safely during such an insane time are just mind-boggling. But when I went in for my shots, there was always someone nearby directing traffic, saying, “Go that way,” “Sit here,” or “Do this.”

It was all so efficient, and yet I never felt like a cow being herded to market. Even the parking attendant asked me how I was doing on my way out. And receiving that caliber of service from literally every employee is just … phenomenal. I was blown away.

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