Bladder Cancer: The Long, Unpredictable Road

Living with bladder cancer can feel like holding your breath, never knowing what lies ahead or what the doctor might say at your next visit.

We recently shared an article by BladderCancer.net contributor Jim Van Horne where he shared a first-hand account of his ups and downs with bladder cancer. His piece exposed the uncertainty that many live with— even after they’ve been handed a cancer-free declaration—because bladder cancer can vanish and reappear without warning.

There is no one-size-fits-all bladder cancer experience. The good news is that many who had the disease go on to live for many years, but leaving the stress of the disease behind is another matter entirely.

When we posted Van Horne’s piece on the BladderCancer.net Facebook page, more than 100 of you commented. Here’s what you had to say.

“I went through that for four years.”

One of the biggest hurdles with bladder cancer is that there is no such thing as a ‘typical’ diagnosis. In other words, the progression of the disease or the time it takes your body to beat it are too hard to estimate. Life really becomes one day at a time, and one doctor visit at a time. The vigilance and patience required to deal with the disease and the treatments can be draining. But the upshot to it all is that many survive the diagnosis and enjoy far more time cancer-free than might be expected.

“I went through that for four years. Now, I’m going on five with annual scopes being clear.”

“I go for a scope tomorrow after four years I’m still cancer free.”

“My mother lived 25 years with bladder cancer.”

Family, friends and loved ones are right on that roller coaster, too. The journey that is bladder cancer affects our communities. Loved ones worry and get fearful and angry right alongside the person with the diagnosis. But it wouldn’t be called a roller coaster without ups as well, and thankfully, this condition often comes with good news and even better odds.

“My mother lived 25 years with bladder cancer. I remember all those 3-month checkups and hospital visits. Ultimately, she had to have her bladder removed after 13 years, but then she lived 12 more years. She died at 81 of something else, so the checkups and treatments were worth it.”

“What my mother had was terrible. The cancer went on to her lungs to brain. She faced pain a lot. My sister and I both have bladder problems. This disease is nothing to mess with.”

“Tumors keep coming back!”

Bladder cancer is one of the most persistent cancers, making it critical that survivors keep up with follow-up visits. The good news is that doctors can perform urine tumor marker tests and scopes to help diagnose the presence of any new tumors, so survivors can be proactive about their care.

“After four years without new tumors, I was declared cancer free. They said my odds of new tumors, were about equal to someone who never had bladder cancer. (Bladder tumors come back in about 40% of patients, or so I was told.)”

“Seven years for me, too! Tumors keep coming back!”

“I try to be thankful because I’m still here.”

It’s never easy to accept a disease that seemingly will not go away. Even when bladder cancer survivors receive a clean bill of health, most are still anxious that the good news might not last. It’s hard to stay positive. But, anyone who is reading this is still here, living to fight—and hopefully enjoy—another day.

“I completely understand. I’ve been going through it for 12 years in June, but I try to be thankful because I’m still here and my bladder is, too.”

We wish to thank everyone who opened up about their experiences with bladder cancer. We appreciate all of your honest shares.