The Bladder Cancer Journey

A diagnosis of cancer, regardless of the type, is a journey. From the prognosis to the treatments and post-follow-up care, each person has their own experiences.

In our 2020 Bladder Cancer in America survey, we learned more about this country's sixth most common type of cancer. The survey helped us learn what people with bladder cancer think about:

• Co-morbidities
• Financial impact
• Quality of life
• Attitude
• Lifestyle factors

To gain further insight, we posed a question in our Facebook community group. If you could describe your bladder cancer journey in 1 word, what would it be?¹

Dealing with other health conditions

Our survey revealed that 30 percent of those with bladder cancer have some other cancer. Fifteen percent reported a diagnosis of skin cancer.

Nearly 90 percent of respondents reported having other health conditions as well, including:

• High cholesterol/triglycerides (36 percent);
• High blood pressure (33 percent);
• Arthritis (25 percent).

The bladder cancer journey

Because most people with bladder cancer deal with other health ailments, a diagnosis can trigger every emotion on the planet. Our survey showed that bladder cancer patients often feel depressed, anxious, misunderstood, and worried.

In describing their bladder cancer journeys, members of our online community used words like:

• Long
• Never-ending
• Emotional
• Humbling
• Exhausting
• Draining
• Constant

Others said they felt all of these. One person said there "is no one word to describe... Emotions all over the place."

Not all of the emotions and feelings surrounding a bladder cancer diagnosis were negative. Some said they "strive to maintain a positive attitude" and have learned to "appreciate the small things."

On Facebook, one of our community members summed it up like this, "I could have used any and all those words at some point on my 9-year journey. They're all chapters in my book. I'm on the "thankful" chapter now. Fight on fightas!"

Another one described her current state of being "grateful right now! And anxious."

Painful, stressful, and all-consuming

Participants in our survey reported their top symptoms as:

• Fatigue – 33 percent
• Urgency – 28 percent
• Frequent urination – 27 percent
• Urinary leakage – 21 percent

If you are newly diagnosed, you may be anxious about your first transurethral resection of bladder tumor (TURBT). TURBT is a test to see if cancer has spread to the muscle layers of the bladder.

Someone who commented on our Facebook post described how she felt about her upcoming procedure, "Right now, it's scary. First TURBT later this morning."

Other respondents said waiting for results and dealing with the medical community was the most stressful part. "Draining and exhausting dealing with the medical community."

Another member of the community described her journey as being consuming. "Consuming my time, consuming my mind, consuming my worries. And consuming my money."

According to the survey, bladder cancer had a negative impact on finances for 20 percent of those who responded. Five percent said they use a financial support program.

Support is key

Like any medical diagnosis, creating a network of support is vital. Of those who took our survey, 33 percent reported what they need above all is emotional support. The online community emphasized the need for this type of support as well. "Scary. But this group [referring to our online community] has helped a lot."

In addition to emotional support, our survey reflected the need for other types of support among bladder cancer patients. This included help with transportation to and from doctor appointments, help with household duties, shopping, and personal care.

Sharing your bladder cancer journey

Thank you to everyone who shared their experiences with this story. We appreciate your contributions, all of which help those who are new to the community to learn more about the bladder cancer journey. Tell us about your experience in the comments below, or share your story with the community.

The Bladder Condition in America survey was conducted online from January 2020 to May 2020. The survey was completed by 589 people.