Community Views: Bladder Cancer and Daily Life

There is no question that a bladder cancer diagnosis changes many aspects of daily life. To learn more about bladder cancer's effect on life, we reached out on the BladderCancer.net Facebook page. We asked the community, "If you had to pick one, which area of your life has been most affected by bladder cancer?"

More than 100 community members responded. Here is what they shared.

Fear of recurrence

The most common response was that people who have or have had bladder cancer fear its recurrence. It is normal to have stress around the need to have regular scans and the fact that they may show the bladder cancer has come back.

For many, the fear is most heightened right before the cystoscopy procedure that biopsies the bladder. Some people shared that fear is always part of their thoughts, even if it is in the back of their minds.

"I am most stressed around scans. My anxiety is off the charts at that time."

"The scanxiety."

"Every time I have my cysto. The anxiety is horrible."

Sex life

Because surgery for bladder cancer often also involves the removal of the prostate in men, sex lives tend to be negatively affected. The prostate impacts ejaculation, so this is understandable.

For women, bladder cancer surgeries can result in nerve loss in the area as well as vaginal dryness. Surgeries can also result in shorter, smaller vaginas. It can be a lot to deal with, so it makes sense that changes to their sex lives were a big concern for many people.

"For me, it is my sex life."

"We took a big hit to our intimate life. We have tried some different things, but it is just not the same. I miss the closeness and intimacy."

Sleep

Radiation and chemotherapy for bladder cancer can leave people feeling fatigued for months. An even longer-lasting issue is that the bladder is often smaller after surgery, which means that many people have to urinate more often. Those who have a stoma and a urine-collection bag shared that they commonly bump the bag in their sleep, causing spillage.

In all of these instances, it becomes much more challenging to sleep through the night. Because of this, it is natural to feel tired and frustrated from the lack of sleep.

"My sleep. During the night, I am up every two or three hours to go to the bathroom. I have not had a good night of sleep at all."

"Sleeping. I am a side sleeper and try sleeping on my back, but that does not work. Too many times, I wake up to a soaked bed and body because I rolled over on my bag during sleep."

Fear of a bag leak in public

Most people who have a stoma and an external bag shared that the fear of leaks is something they think about every day. The good news is that, with time, they have become more comfortable and have a better idea of what to expect. The more they are out and about in public and experience no leaks or problems, the easier it is to make peace with what daily life looks like now.

"In the back of my mind, I always fear a bag leak when I am out and about."

"I do have a lot of leaks as my urostomy is retracted, but over time that worries me less."

"Standing in front of people to speak while worrying about what my stoma and equipment may do."

Mental health

Many people shared that one of the hardest parts of dealing with bladder cancer is the toll it takes on their mental health. They experience a lot of stress and anxiety while going through treatment.

But many who are now on the other side of treatment shared that it does get better. With time, therapy, and the comfort of friends, they are coping well with bladder cancer's effect on their lives. And with online communities like this one, they have found not just acceptance but new ways to live a happy and full life.

"My mind. It is 15 months later, and I am still trying to accept the urostomy. Therapy helps."

"Occasional mental stress. Once I retired, it helped."

"I was fortunate. I am now at stage zero."

"Prayers to all the fighters out there. I am in remission (2 years), and I pray everyone else will also be. Stay up, peeps!"

We want to say thank you to everyone who shared their story with us. We are grateful that so many people are willing to share their experiences, strength, and hope. Tell us about your experience in the comments below, or share your story with the community.