A Cautionary Tale – Victoria’s Story

Victoria offers a caregiver’s perspective in the hopes that others can learn from her dear friend’s tragic story.

Mentor, Business Partner, Father Figure

I’ve always been interested in health care, from my background in pre-med and public health, to my decades of experience in helping to grow medical and dental device companies. At that intersection of healthcare and business, I found a kindred spirit in Hans.

For eighteen years, Hans was my mentor, business partner, and father figure of sorts. And I was his protégée, colleague, and frequent travel partner as we trekked across the globe growing businesses together. Our company’s regional headquarters were in Taiwan, but Hans did not speak Mandarin, the local language. I grew up in Taiwan and am fluent in both Mandarin and English, so very often served as his translator.

Every year, our company required an employee physical. For at least ten of those years, I had to translate the conversations between Hans and the Taiwan-based doctors, including the fact that the doctors found blood in his urine. He didn’t have typical environmental or genetic risk factors for bladder cancer, but he did tend to dehydrate due to his heavy travel schedule. Each time, doctors treated him for a bacterial infection, and he never returned for a follow-up or heeded their recommendations for further tests like cytology (looking for suspicious cells in a urine sample).

In 2015, Hans started complaining about having problems passing urine. At 70 years of age, he attributed this to benign prostate hyperplasia (BPH) and refused to look further. The problem became noticeably worse, and in April of 2017, I finally convinced him to visit his urologist in Taiwan.

Finding the Tumor

Urology tests revealed that his prostate was not enlarged and ruled it out as the cause for the impeded urine flow. The next step was to perform a bladder ultrasound. Here, the urologist found a large object. As I translated their conversation between Mandarin and English, the urologist explained to Hans that given his history of bladder infections, the mass might be a bladder stone. But as the urologist tried to reposition the mass during the ultrasound, it didn’t yield. This was the moment that cancer crashed into our reality.

During his cystoscopy, not only did the surgical team find a large, cancerous tumor mixed with stones in his bladder, but they also determined that his urethra, both ureters, and part of his prostate were also full of cancer cells.

I thought back to all those moments in 2015 and 2016 when I tried to convince him to dig further into his urinary dysfunction. All those times he shrugged off the warning signs and healthcare advice. His cancer was very likely present back then.

In the operating room, the surgical team used lasers to remove as much cancer as possible. They also removed his prostate as a precaution. The cancer was diagnosed as an aggressive urothelial carcinoma. It was still on the mucosa level, so considered a non-muscle invasive bladder cancer (NMIBC).

Hans was still reeling from the shock of a cancer diagnosis when his urologist recommended a radical cystectomy – removal of his bladder. Using me as the language interpreter, the Taiwanese urologist explained to Hans that this would be the best course of action.

“This isn’t the lifestyle I want,” Hans responded to the idea of a radical cystectomy. “I’d rather die than do that.” To this day, that phrase still stops me in my tracks.

Hans’s Refusal

I spoke with Hans’ doctors; I did my own research. I knew the dark turn that Hans was about to take through his refusal. I tried to drop hints, but he would respond, “So be it.” I wanted him to hear from others who went through that procedure for some perspective, but he shut down instead.

As his caregiver, I wanted to support him, but I also felt like he was selfish in not considering his family and loved ones. He and I both felt alone and miserable.

Back on Course

Hans agreed to undergo a Bacillus Calmette-Guerin (BCG) treatment and to return for routine cystoscopies. The latter was a big step for him.

Hans and I diligently returned to the hospital in Taiwan every three months to provide a urine sample for cytology analysis. Due to the aggressive nature of his cancer, he was also scheduled for cystoscopies at that same interval, regardless of the cytology results.

Many times, we learned that Hans’ cancer had returned, and his doctor would go in and remove the cancerous cells. A standing concern was unblocking his ureters to maintain urine flow from the kidneys without causing cancer cells to shed onto and embed in Hans’ bladder wall. It was a tough balance. Hans also went through radiation therapy and chemotherapy to prevent his cancer from recurring.

In spring of 2019, no cancer cells were found in Hans’ urine sample or cystoscopy procedure. He felt like his bladder cancer journey was over and enjoyed a wonderful spring and summer in Taiwan. I remained very worried and encouraged him to continue with the routine surveillance. He refused. He didn’t want to go back.

His Journey’s End

Sure enough, about six months later, a mass appeared on one of his thighs. In another dark turn, the cancer metastasized, spreading to other parts of his body beyond his bladder. This meant more chemo and more chemo side effects. His immune system was shot. He required more blood transfusions than I could count.

After three months in hospice, Hans’ three-year ordeal with bladder cancer came to an end. I was devastated. This was the journey that he chose, but it wasn’t the journey that he deserved.

Victoria’s Three Wishes

First, I wish that Hans was more willing to comply with testing. Work was a welcome distraction for Hans during his bladder cancer battle, so he saw leaving work to go for testing as a hassle.

Along with Hans’ compliance, I wish, secondly, that his medical team had at their disposal enhanced yet less invasive detection and surveillance tools. I feel that this would have kept Hans compliant while providing highly detailed information to support his treatment strategy.

Lastly, I wish that Hans had been more receptive to the support and advice from those around him. Cancer is not–and should never be–a solo journey. Family, friends, loved ones, co-workers…so many people, even strangers, are eager to jump in and ease the burden that comes with a bladder cancer diagnosis. We want to be a beacon of strength and determination when patients are caught in a storm of despair and negativity.

Pushing Forward with Hope

Unfortunately and due to a combination of Hans’ resistance to seek treatment, as well as what I viewed as less-than-ideal medical care, he lost his battle with bladder cancer. I remain optimistic that we can continue to push for new and effective treatments as well as advances in routine surveillance.