Two and a half years ago, retired singer and musician Phil Esser learned he had advanced stage bladder cancer. After undergoing surgery and completing different treatment regimens, Phil’s disease is in remission. He now continues to live a full life in Boulder City, Nevada, and enjoys spending time with his friends and family while remaining active in his community. Every couple of months, Phil undergoes follow-up CAT scans to track the state of his disease.
We wanted to bring Phil’s experience, which he generously shared with us, to those who may have been affected by this disease or want to better understand living with advanced bladder cancer.
What were your initial symptoms that drove you to seek medical advice?
Phil: In October of 2014, I decided that I might have something wrong with me because every time I would urinate there’d be excruciating pain – the pain had risen to what they now call a nine out of ten. It was the first time I ever had a complaint for my doctors. I visited a couple of different doctors, and effectively communicating the severity of pain proved to be incredibly important.
Can you describe the first conversation you had with your doctors about your concerns?
Phil: My first urine tests actually came back as if there was nothing wrong, so I asked them to please look further; that’s when they retested and sent my samples out for further evaluation and discovered that I had a good probability of bladder cancer.
My initial surgeon was kind of a realist. We both knew that this could be bad and have a bad result, but he went ahead and removed my bladder, and when that procedure was over, he had to inform me that the cancer had already gone through the wall of the bladder which meant there was no way they could remove it all.
What were your first thoughts when you received the diagnosis of bladder cancer?
Phil: By then I had suspected that it might be something bad. I had also broken my shoulder just before then, so I had two very painful things to deal with and I concentrated on survival and just getting through it.
Beyond that, I didn’t really know what to think, but I had a lot of faith in the surgeon that I had been assigned to. My other immediate thought was “I’m still the same guy from Omaha who went to Catholic school” – I was ok. I was concerned because there were a lot of little hobbies and projects that I thought I couldn’t tend to but I was grateful that I got a diagnosis because I was in a considerable amount of pain every time I would urinate. Thankfully, I had this very knowledgeable doctor who made a strong recommendation.
How do you prepare yourself for follow-up visits and what are your expectations?
Phil: My wife Peggy brings a notebook. She has kept a copy of every blood test, CAT and PET scan result in this notebook. It’s now about 3 inches thick with all my test results, but it has really come in handy.
What has been the most useful advice you have received since you were diagnosed?
Phil: I would say the most useful advice, and the advice I’d give to anybody that had to go through what I’ve gone through so far, I would say that you have got to be your own advocate. In my case, both my wife and I did lots of reading, lots of phone calling. We looked into every little thing that we thought was going to be important in our decision-making, including investigating the possibility of participating in clinical trials.
What message do you have for others also facing this disease?
Phil: Understanding that you have options is very important. People are not always aware that there are other treatments they may want to look at, and sometimes the doctors may not be aware of all of the options that exist. You also have to follow your instinct. If you think something is wrong, continue to ask for more tests even if your initial test comes back negative.
How have you seen the bladder cancer conversation evolve since you were diagnosed?
Phil: Because of my oncologist, I’m much more interested in the new techniques to fight cancer. Immunotherapy was something I hadn’t really heard much about. I’d heard the name before, but I hadn’t even thought of it. So when it became one of my options, I paid attention.
What has been the most rewarding experience for you as someone living with advanced bladder cancer?
Phil: Being part of a clinical trial, I’ve watched this complicated research. This research and treatment is part of history – there’s a fulfillment to this.
Learn more about the signs and symptoms of bladder cancer, as well as How to Talk to Your Healthcare Team about Advanced Bladder Cancer if you have been diagnosed.