Community Views: The Struggles of a Bladder Cancer Diagnosis
Bladder cancer is a type of cancer that not many people discuss or even know much about. As such, there is a lot of misunderstanding and a general lack of awareness about everything that comes along with this diagnosis.
In an effort to foster conversation and help describe bladder cancer in a true light, we turned to the BladderCancer.net Facebook page. There, we asked community members to tell us: "How would you describe living with bladder cancer to someone who does not understand?"
More than 70 people shared their honest descriptions with us. Here is a look at some of the responses.
The thought of it is constant
For many people living with bladder cancer, one of the hardest parts is that there is no mental break from the diagnosis. The fear and dread remain front and center in the mind most – if not all – of the time. If bladder cancer is not the immediate thought, then it is a nagging one in the back of the mind that still does not allow for much peace.
"It feels all-consuming."
"It is constantly on my mind, and I am worried and scared."
"It is like waiting for the other shoe to hit the floor."
"Scary because it is always there on your mind."
"It feels like a nagging feeling in the back of your mind every single day!"
It can feel embarrassing
Many aspects of bladder cancer can feel embarrassing, from trips to the doctor to the many ways that surgery alters what everyday life looks like. Invasive exams leave many people feeling exposed and vulnerable. When treatment includes the removal of the bladder, it can leave someone feeling ashamed and "less than" when relying on a urostomy bag to collect and hold urine.
"To have cancer is bad, but to have it in the bladder is degrading, embarrassing, and distasteful. You lay on your back, legs wide open, while several people are staring at your private bits trying to poke a tube into you. It is hateful."
"I had a radical cystectomy and have a urostomy bag. Then had a colon hemorrhage. The day I was released I had a colostomy bag."
Treatments are incredibly difficult
Several people shared that bladder cancer treatments are tough to endure. Some even used words like "barbaric" and "medieval" to describe procedures like a cystoscopy, when a device the size of a pencil or bigger is inserted into the urethra to view the bladder.
For men, anesthesia is typically part of the ordeal because the process is just so painful. In some people, treatments have led to PTSD.
"I used to describe it with as much humor as I could muster. I would describe the cystoscope exam and BCG treatments as somewhat medieval to my guy friends at work. No man is comfortable hearing about those procedures."
"It is PTSD-inducing! The day I was to start chemo, our hospital was cyberattacked. Had to wait 8 weeks, stage 4! Then chemo started, which was the worst experience of my life. I had to endure it all by myself as COVID protocol would not allow a support person. Then surgery. Everything was removed. I was gutted really! Almost died twice."
"The cystoscope procedure to me is like being transported back to medieval torture times."
"My husband has been through such hell that it is hard to articulate it properly. Prior to surgery, he survived several months of prophylactic chemo. During surgery, they removed his bladder, prostate, and all reproductive organs and built a neobladder. So far, he has had 4 major surgeries."
Life is forever different
A handful of people in the community shared that life will never be the same after being diagnosed with bladder cancer. It physically changes the body in a big way.
Plus, it also tends to dramatically change how people think about themselves and life going forward. The disease itself is a nagging concern and fear. However, for some people, it is also a push to make the most of the good days when you can.
"Bladder cancer is totally life-changing."
"My life has changed forever, in some ways good and some bad. The good is that I appreciate every day. I used to take my life for granted. The bad is that healthwise, I do not feel I will ever be the same before bladder cancer. Going through chemo and then surgery to have my bladder removed and radical hysterectomy, I just know I am different and I feel different. However, I am so blessed to have just celebrated 1 year of being cancer-free!"
We are grateful to everyone who shared this story. We know this can be a sensitive subject to open up about, and we appreciate your willingness to share. Tell us about your experience in the comments below, or share your story with the community.
How well does your healthcare provider understand your bladder cancer?