20 Years of Impact: 20 Voices of BCAN
For two decades, the Bladder Cancer Advocacy Network (BCAN) has been a beacon of hope, support, and advocacy for patients and their loved ones. As we celebrate 20 years ofcollectiveprogress, we honor the voices that have shaped this journey—those who have faced bladder cancer with resilience, and those who have provided unwavering support.
Through our20 Voicesinitiative, we are sharing powerful personal stories that highlight theimpact of bladder cancer and the strength of our community. These voices reflect the challenges, triumphs, and hope that define BCAN’s mission for better todays and more tomorrowsfor all those impacted by bladder cancer.
Bob Green never expected a routine trip to change hislife, but sometimes, the smallest signs can lead to the biggest discoveries. A long flight, a strange observation, and a moment of dismissal—until the truth became impossible to ignore. What followed was a journey filled with unexpected challenges, life-altering decisions, and a surprising spark of innovation. But through it all, one thing remained certain: life doesn’t stop. In fact, it took a new direction Bob never saw coming. Here is his story:
In 2021, I was diagnosed with bladder cancer. That year, in July, I underwent a cystectomy and now live with a stoma and an ostomy bag.
It all started when my wife and I were flying to Guam to visit our daughter, grandkids, and son-in-law. It was a long flight, and when I went to the bathroom, I noticed my urine was unusually dark. I thought to myself, “Is that coffee or something?” I dismissed it at first. But while we were in Guam, it happened again. This time, it was clearly blood. Again, I brushed it off, thinking maybe I had a kidney stone or something. I wasn’t experiencing any pain, so I didn’t worry too much.
We returned from Guam on January 18th, and that same evening, I went to the bathroom and saw a significant amount of blood. My wife, who is a retired doctor, confirmed what I already suspected—it was blood. That marked the beginning of my medical journey.
I first went to a minor clinic, but they couldn’t find anything, which was frustrating. I then saw my urologist, who had been treating me for urinary issues before but nothing serious. When I told him about my symptoms, he said, “Well, you just earned a full workup for cancer.” That was a shock. I hadn’t even considered the possibility. That same day, they did a CT scan, and sure enough, they found a mass in my bladder.
I underwent a transurethral resection of the bladder tumor (TURBT) to determine how serious it was. I remember being awake during the procedure and seeing the tumor myself. I told the doctor, “That does not look good.” He simply responded, “You got that absolutely right.”
The tumor turned out to be a T2, meaning it was muscle invasive. My doctor told me early on, “You’re going to lose your bladder. There’s almost no question about that.” He suggested an external bag instead of a neobladder, saying, “You’re 69 years old. Don’t worry about saving it or getting a neobladder. Just get a bag. You can sleep all night.”
Still, I wanted to explore my options. I went to Penn State Hershey, an excellent hospital, where they were starting a clinical trial with a new medicine. After running through all the necessary evaluations, the tumor board ultimately decided I wasn’t a candidate. The radiologist determined that by the time they finished radiation, my bladder wouldn’t be functional enough to save. That sealed my fate.
I began chemotherapy on my birthday, April 21st. The plan was to have four rounds, but after the third, my oncologist told me, “You’re doing so well with this that we don’t want to put you through another round and risk side effects.” I was relieved. Then, on July 23rd—our 39th wedding anniversary—I had the surgery.
Leading up to it, I thoroughly researched my options. My wife and I seriously considered a neobladder but ultimately decided against it due to the longer recovery time and the likelihood that I’d need an external bag in the future anyway. To prepare myself, I even bought ostomy bags and tried them out. Ironically, I initially bought a colostomy bag by mistake. That mistake ended up being a blessing because it made me think about a better way to empty the bags. That thought process led me to invent a new type of ostomy drain called the Bobtail, which my doctor and oncologist encouraged me to patent. Three and a half years and a lot of money later, that invention is now available to help others.
My surgery took four hours longer than expected, but I had an outstanding doctor—Dr. Aminsharifi at Penn State Hershey. He specialized in urological oncology and advanced robotic surgery. Not only was he an excellent surgeon, but he had the best bedside manner of any doctor I’ve ever met.
Before surgery, he sat down with me, my wife, and my daughter (who joined online because she’s also a doctor) and spent an hour explaining step by step what he was going to do. He even drew diagrams. No doctor had ever done that for me before. Then, about four days into my hospital stay, he walked in holding a piece of paper with tears in his eyes. I thought, “Oh no, this is going to be bad.” But instead, he said, “I get to share with you the joy that we got it all. There is no evidence of cancer.” I could see how much he cared, and that meant a lot to me.
I spent ten days in the hospital, longer than expected because my bowels wouldn’t activate properly. But I was fortunate—I had almost no pain. After two days, I asked them to remove my epidural because I didn’t need it. I only took Tylenol.
Recovery at home was another challenge. Before surgery, I had walked 237 miles in 30 days to get in shape, and that helped. But dealing with the stoma and getting the bag to stay on was incredibly frustrating at first. One day, I went through seven bags. That was my lowest point. I remember thinking, “Is this going to be my life?” Thankfully, after about two months, things smoothed out.
I became actively involved in the bladder cancer community, joining the executive committee of the Penn State Hershey Bladder Cancer Support Group. That’s how I got connected to the Bladder Cancer Advocacy Network (BCAN). I’ve attended their summits in Baltimore and Philadelphia, and they’ve been incredibly helpful.
Despite everything, my life didn’t stop. My wife and I recently took another trip to Guam and then spent 16 days in New Zealand. I’ve also gone whitewater rafting, zip-lining, hiking in jungles, and woodworking with hand tools. I do everything I used to do.
For anyone newly diagnosed, I want you to know: there is life after this. It’s all about mindset. Don’t let an ostomy define you. You define how you live with it. And one crucial piece of advice—learn to change the bag yourself. A week after surgery, with my wife and home nurse watching, I told them, “You two need to get out. I need to do this myself.” It was the best decision I made.
I also highly recommend wearing a stoma guard for protection. I use the Stealth Belt Flex Guard, and it’s been a game-changer.
This journey hasn’t been easy, but I’m still here, living fully. If you’re facing this diagnosis, know that you can too.
