Self-Advocacy and Coping with a Shocking Bladder Cancer Prognosis

At age 76, Karl was diagnosed with stage IV bladder cancer. Before his diagnosis, he was in great physical health and lived an active life, so the cancer diagnosis came as a complete shock. His medical team recommended that he undergo a radical cystectomy (bladder removal surgery).

Karl agreed to have the surgery, explaining, "The medical consensus was that I would come out of the surgery completely cancer-free." However, immediately after the surgery, Karl's healthcare team brought him unthinkable news. They had discovered that the cancer had metastasized (spread) beyond his bladder. His oncologist revealed that Karl likely only had months left to live.

A conversation with Karl

Despite the grim prognosis, Karl went online to read and research everything he could about bladder cancer and treatment options. I had a conversation with Karl to learn about his story and how he is doing today – 6 years after he was told to get his affairs in order in the event that he didn't survive bladder cancer.

Let's start at the beginning

Karl's bladder cancer story began when he found blood in his urine and went to see his family doctor. His doctor immediately considered bladder cancer as a possibility but wanted to rule out infection first.

After a week of antibiotics which didn't help, his family doctor referred Karl to a urologist who diagnosed him with bladder cancer. Many people experience a delay in their diagnosis after experiencing symptoms, but Karl gives a lot of credit to his family doctor, saying he "was on top of it the whole time."

Very few treatment options for advanced bladder cancer

In 2014 when Karl was diagnosed, there were very few approved options for stage IV bladder cancer. His doctors did not recommend chemotherapy because they believed that his kidneys wouldn't be able to withstand it.

The only remaining option was bladder removal surgery. Karl decided to have the surgery, and when asked how he would describe it, he joked, "They go in with a garden rake and take out everything they can reach!" During his hospital stay, Karl lost a lot of weight and muscle tone and was left weaker but with a new perspective on life.

Advocating for himself and researching immunotherapy

After the shocking realization that the surgery had not gotten rid of the cancer, Karl was unwilling to accept that there were no other options. He learned that he would need to advocate for himself. He went online and read about immunotherapies, a brand-new experimental treatment option for advanced bladder cancer.

The head of the oncology department at Karl's hospital had not heard of immunotherapy for bladder cancer when Karl asked, but a local oncologist had. Karl asked if there were any clinical trials in which he could participate, and luckily, his doctor was able to enroll him as the last patient in a clinical trial that was closing recruitment.

Starting immunotherapy infusions as part of a clinical trial

Karl began immunotherapy infusion treatments, and after 6 months, his scans came back clear, and he was found NED (no evidence of disease). Karl encourages anyone in a similar position to do their own research because "no one is as interested as you are in your own case."

He credits his healthcare team for their work treating him, but he also says, "I will always be glad that I had the good sense to ask my oncologist about immunotherapy. If I hadn't spoken up, if I hadn't gotten in that clinical trial, if that drug hadn't worked, this story would not be written today."

Karl's experience with immunotherapy

Karl continued to receive immunotherapy for 3 years until he had to stop due to kidney damage. He said, "I was almost to the point of needing dialysis!" Despite the side effects of his treatment, he was glad to participate in the trial to help identify the long-term effects of immunotherapy and help other people with bladder cancer in the future. He continues to participate in a follow-up study that monitors his health over the years.

Karl is retired from the Navy and lives in North Carolina. He continues to be an active member of the bladder cancer community and attends an annual bladder cancer retreat to connect with fellow survivors. We at BladderCancer.net thank Karl for taking the time to share his experiences with us!