Sid’s Story: “Learn to be your own advocate.”

Sid shares his bladder cancer diagnosis after experiencing blood in his urine while vacationing in Hong Kong, navigating treatment decisions after learning he had muscle-invasive bladder cancer, and choosing trimodal therapy to preserve his bladder. He discusses recovery, finding support through BCAN, and the importance of researching treatment options and advocating for yourself.

In the beginning, I thought I had no symptoms. Looking back, I might have had some burning sensations when I urinated, but I didn’t think it was anything serious. I just chalked it up to old age, which is not what you’re supposed to do.

I was living in Singapore at the time, but I was on vacation in Hong Kong with my wife when I first realized something was really wrong. Now, my wife and I vacation very differently—I’m the sort of guy who wants to hang out by the hotel pool and relax, but my wife likes going to every restaurant, every tourist site, every temple. Little did I know that her zest for adventure would inadvertently save my life.

We were probably walking about 20,000-30,000 steps a day, which was a lot for my age. Even then, I felt fine overall. That is, until I woke up to pee in the middle of the night, and it came out ruby red. At first, I thought I was dreaming.

I didn’t want to alarm my wife, so instead of waking her up, I started Googling things. UTIs, kidney problems, bladder cancer…it was overwhelming. I tried to go back to sleep, but I kept waking up with the urge to pee after that. Each time, I’d try to pee, but nothing would come out.

On the fifth time trying to pee, after pushing and pushing and pushing, a blood clot the size of my finger shot out. It was so scary. At this point, I woke up my wife and told her what was going on. We went down to the hotel front desk and asked for the nearest emergency room.

Discovering Bladder Cancer While Vacationing Abroad

They didn’t have a urologist at the time we got to the emergency room, so we waited all night. We finally saw someone at 11 am, who immediately did an ultrasound on my bladder and found several masses. We were in her office for all of five minutes when she told us, “Oh, you have tumors in your bladder.”

We were sleep deprived and having trouble processing information, so I asked for clarification. In the most nonchalant voice, she tells us, “It’s probably cancer.” Hong Kong doctors don’t beat around the bush.

My father-in-law is a pathologist, so we called him to get his advice. He told us to fly home as soon as possible and start making appointments. So, we did. Ironically, we were supposed to go to Tokyo Disneyland that day, the happiest place on earth, but instead, we got on the next flight and were back in Singapore that night.

The great thing about Singapore (and Asia in general) is that I was able to call a urologist’s office at 9 am for an appointment and get seen at 11 am that same day. The doctor performed a CT scan and got the results an hour later, confirming that there were masses in my bladder. He had me come in at 7 am the next morning for a cystoscopy and TURBT and found two tumors.  

In the end, a process that might’ve taken me six months in the US was done in 24 hours. So, I was very lucky to be in Singapore.

Exploring Treatment Options for Muscle-Invasive Bladder Cancer

The results for my biopsy came back a few days later, and I found out one of the tumors was muscle invasive. My urologist strongly recommended a radical cystectomy (bladder removal), but I wanted to do my own research first.

I started by contacting as many urologists as I could to get other opinions, and all of them pretty much said the same thing: I need to do the cystectomy. Even though it sounded like my path forward was pretty final, it had only been a week since I was first diagnosed and I wasn’t ready to give up on preserving my bladder yet.

Then, I found out about trimodal therapy—an alternative treatment option that requires a surgery to remove the tumor from the bladder and radiation therapy combined with chemotherapy to destroy remaining cancer cells. I was told it was risky, but if it worked, I would get to keep my bladder.

As I continued my research, my urologist let me know he wanted to do a cystectomy in one month’s time, so that’s how long I had to decide what I wanted to do. I started meeting with oncologists to learn more about trimodal therapy, until I finally met Dr. Chen. I looked him straight in the eye and said, “Look, this is the research I’ve seen and I’m considering doing trimodal therapy. What would you do if you were in my situation?”

He thought for a second, looked at me, and said, “I would do exactly what you’re doing.”

That was all I needed to hear.

Finding Bladder Cancer Support Through BCAN

When you read about chemotherapy, or you talk to people you went through it, you think you understand what it might be like. You think, “I’m a man. I’ve been through pain. I can handle it.” But then you do the chemo, and oh my gosh…it felt like a near-death experience.

The first three weeks were okay, but it really started to hit me by the fourth week. By the sixth week, I was just so weak. I couldn’t even brush my teeth.

A month after I finished chemo and radiation therapy, we decided to move back to the US because I needed my family and friends around to help me recover. Once I was back, I started calling up doctors’ offices to try to make an appointment for maintenance care, but the earliest consultation I could find was three months out. After my experience in Singapore, waiting that long for a follow-up cystoscopy felt ridiculous.

Around this time, I went to my first BCAN Summit. It was great because up until then, I was basically going through this by myself in a foreign country. It was comforting to be surrounded by a community of people going through the same thing I was. But I was also lucky, because that Summit is where I met Dr. Jennifer Linehan, a urologic oncologist.

I told her that I needed follow-up care, but was having trouble getting in. She gave me her personal phone number and told me that she’d get me an appointment the following week. And she did. She’s been my doctor ever since.

Recovering After Trimodal Therapy and Moving Forward

A few months into my recovery, I asked Dr. Linehan to administer a Signatera test, a ctDNA test that can identify cancer relapse. A circulating tumor DNA (ctDNA) test can help bladder cancer patients by detecting signs of cancer in their blood, potentially identifying recurrence earlier and helping doctors make more informed treatment decisions.

A month after taking the test, I got a text saying my test results were in.

When I read “negative,” my wife and I started screaming and shouting with joy right then and there. It felt like this huge mental weight was lifted off our shoulders.

One thing I struggled with through this journey is doubt. Did I make the right choice? Should I have done the radical cystectomy?

At the end of the day, I did all the research I possibly could, I educated myself, and I made the choice that I thought was best. And even though the ctDNA test doesn’t 100% guarantee anything, the outcome has been as good as I could’ve possible imagined. If I could give someone advice to someone who was recently diagnosed with bladder cancer, I would say: Learn to be your own advocate and arm yourself with as much information as you can.

If the cancer does come back, we will deal with it. But for now, what more can I do except live my life? And that’s exactly what I’ve been doing.