Tim’s Story: “We are strong. We are positive. We are together.”

Tim Stanley came across blood in his urine, thinking it was a kidney stone, but further tests revealed not just stones but something he never expected: bladder cancer. His recovery was not easy, but with support from his family and the BCAN community, his journey taught him the importance of self-advocacy and early detection. This is Tim’s story:

It was a nightmare when I saw blood in my urine in August 2022.  It wasn’t the first time, so I went to urgent care, and the doctor ordered a CT scan. I have a history of kidney stones, and the CT scan revealed stones in my kidneys, however, I was surprised to learn that there was also a stone in my bladder. I was referred to a urologist as my next step in what would become an incredible journey. 

In January 2023, I had my first cystoscopy, and I went under general anesthesia. When I woke up, the urologist told me that he discovered a tumor in my bladder but was certain he removed it entirely. Still under the effects of the anesthesia, I was confused.  My brain didn’t register that a tumor meant cancer. 

I was sent home without a catheter or any explanation that I might have trouble urinating! That night, I could not urinate, and the pain became excruciating. My wife rushed me to urgent care where I was immediately catheterized. I told my wife, “My life will never be the same.” 

I was in denial at first. I just couldn’t believe I had cancer again! I’ve had several surgeries dealing with cancer that include distal pancreatectomy, splenectomy, and thyroidectomy.  

The bladder biopsies showed invasive high-grade papillary urothelial carcinoma into the lamina propria and urothelial carcinoma in situ.  I had another cystoscopy in March and the carcinoma in situ (CIS) was still there but not in the muscle wall.  The urologist gave me a gemcitabine instillation in my bladder.

At that point, I was told my cancer was T1 with no residual disease except for CIS. We started a regimen of six weeks of BCG, and we were optimistic.  At this point, we transitioned to a highly recommended new doctor who was a urologist and oncologist, Dr. Timothy Kim. In July of 2023, he did my third cystoscopy.

When my wife, daughter, and I met with Dr. Kim in early August to review the results, the seriousness of the cancer grew.  We had thought in January we would be able to knock it out and expected that the BCG would work. When we met with Dr. Kim, it was a whole new world.  He spoke to us with honesty and care.  Although not in the muscle wall, the CIS was very aggressive, high grade and was not responding to the BCG at all. He said, “It’s not working, guys.” 

Dr. Kim gave us two viable options. One was to try gemcitabine and docetaxel (gem/doce) which is an intravesical chemo treatment, and then the second option was a radical cystectomy. After our meeting, my wife, daughter, and I went to lunch asking, “What are we going to do?”

I had been using the BCAN website to find information about my disease. I listened to the BCAN podcasts with Rick Bangs, and they were invaluable.

I’m 68 years old and walk and exercise every day. I looked especially for stories that would resonate with who I am.  I was referred to BCAN’s Survivor to Survivor program and was connected to Dr. Doug Cappiello. He is a bladder cancer survivor and similar in age. Doug not only shared his experiences, but he had done a lot of research.  We’ll never be able to share with you the positive difference Doug made in listening to us and sharing all that he had learned. We were blessed when Doug called us from a BCAN summit and said, “Tim, I’m not using your name or anything, but I’m telling some of the best researchers in the world about what is going on with you.” Everybody should be so lucky to have a Doug Cappiello. My wife and I say that Doug was a lifesaver.  

My family and our friends were amazing through this entire journey. My wife’s been next to me every step with love and care. Our daughter has been constantly present and advocated for me through our entire journey. One example of her involvement is when gem/doce was an option she suggested that I reach out to Dr. Michael O’Donnell who developed it. Honestly, I never expected to hear from him, but Dr. O’Donnell emailed me back immediately. We exchanged several emails when I had follow-up questions. The support of the bladder cancer community has been unbelievable to me. This is why I want to tell my story, so people don’t do this alone. 

I spoke with men who had neobladders and ileal conduits. It’s good to talk to people who have been through it. The neobladder surgery is much more complicated. 

As we faced the decision between surgery or gem/doce, I thought back to late January when a friend who is a retired oncologist asked me, “What do you want?” I told him I wanted to live a long life sitting on the porch with my wife talking about our kids and their kids. The “gold standard” is the surgery, and I decided to have my bladder taken out and I selected an ileal conduit.

Dr. Kim performed a radical cystectomy on September 22, 2023. I had a five-day recovery in the hospital, and it was rough. I came home and had extraordinary pain the first night.  My wife took me to urgent care the second night. An angel of a nurse looked at me and immediately started me on morphine. I ended up in the hospital for eight more days because there was a minor urinary leakage.  Dr. Kim shepherded us through the healing process, and I was blessed with knowledgeable and caring doctors, nurses, and hospital staff. 

The journey continued when I returned home and learned to deal with the ileal conduit. I am a long-time runner who now walks and shuffles.  I started walking the hallways in the hospital, and I continued to slowly build my distance and speed. I am eight months post-surgery and just finished a very slow half-marathon. Getting out to exercise helps me physically and emotionally. I hope to finish my 28^th Marine Corps Marathon in late October.  

Upon first learning I had bladder cancer; I don’t think I believed it. It’s frightening. It’s awful for the people who love you. I kept thinking, “How am I going to help my wife? How in the world is she going to go forward?”

It’s important to advocate for yourself and move as quickly as you can. You can’t sit back. Get a second opinion. It doesn’t mean that you think the first doctor is wrong. I should have pushed harder to get something done sooner. I believe that being assertive right from the get-go is important.  

Despite the physical and emotional challenges, I am proud of moving forward. I’m learning how to live with the urostomy, getting comfortable making trips to see family, and doing my best as a husband, father, and grandparent.  As my wife and I say, “We are strong.  We are positive. We are together.”