Karen: Our Bladder Cancer Story Has Been Like a Bad Netflix Series

Karen is Spencer’s wife and she reached out to BCAN eager to share her husband’s journey with small cell bladder cancer. She described this phase of their lives like a “bad Netflix series.”

Unrehearsed: Our Journey with Small Cell Bladder Cancer

My husband, Spencer, was diagnosed with small cell bladder cancer 3-1/2 years ago. If you are unfamiliar with this cancer, it is a rare and aggressive form of bladder cancer. Sometimes these years of battling this cancer feels like a bad Netflix series, with episodes ranging from “In a state of shock” to “Maybe there is hope.”

The “Lucky Foot” episode

In October 2018, Spencer was admitted to our local hospital with pneumonia. While there, we noticed blood in his urine. After being discharged, Spencer went to his internist to follow up on this issue. Further testing did not show blood in the urine. Shortly after, he was experiencing pain in his foot while biking, which prompted him to see his doctor. He was advised to take Advil and we noticed blood in his urine. It turned out that the Advil irritated the tumor tissue and caused bleeding.

Tissue samples were taken and sent to our hospital’s pathology department as well as John Hopkins Medicine. The results returned, and we were shocked and devastated with the news: my husband was diagnosed with small cell bladder cancer. He was referred to a fantastic urologist in town who located the tumor in his bladder. Who knows when the cancer would have been discovered if it was not for his sore foot and subsequent visit to his doctor where the hematuria was discovered.

The “High Anxiety” episode

John Hopkins has a bladder cancer center. We got an appointment with Dr. Hoffman Censits, who also sits on BCAN’s Scientific Advisory Board, and specializes in this rare form of bladder cancer. We were very thankful to get an appointment with her to start his treatment almost immediately. The plan involved four months of chemo with all its terrible side effects removal of his bladder and prostate. At this point, we were numb and trying to take it all in. No bladder? Night bags? Will we remember the steps for the bag change? How could we possibly remember how to care for his urostomy at home? It seemed overwhelming. I felt like we were new parents bringing a baby home for the first time and were totally unprepared. Thank goodness we were able to have a nurse come to the house to guide us through the care of his ostomy for several weeks. In addition, we could call Johns Hopkins day or night if we had an emergency or question.

The “A Few Rays of Hope” episode

As time went on, Spencer began to heal and feel better. He had CT scans came every three months. After two years, the time between scans increased to six months. Fortunately, we could do the blood work and scans locally and have them sent to Hopkins to be reviewed. We finally got the hang of bag changes. Occasionally, Spencer had a urinary tract infection which was scary, but we had the support of his urologist to help him get through those successfully.

The” Christmas Eve Nightmare “episode

On Christmas Eve 2021, we got the results from his six-month scan. The cancer was back in his liver and spleen. There are no words to describe how we felt. Once again, we were back at John Hopkins for four months of chemo. This time the chemo was combined with the immunotherapy drug, Tecentriq (Atezoiumab). This immunotherapy drug was recently approved for the treatment of bladder cancer. The four months of treatment were hell, though.

The “One Day at a Time” episode

Spencer’s chemo mercifully ended, but he continues to get the immunotherapy drug every three weeks and that will continue indefinitely. The good news is that his tumors have shrunk significantly. Spencer is a fantastic person. He still bikes and hikes, works hard to follow a diet that he feels will help his immune system battle this disease and has a deep faith.

We have lovely friends and family members who support us. We still have our ups and downs emotionally but are truly thankful for the amazing doctors who provide his care. We are grateful for each day and continue to be hopeful.