Lionel’s Story: A Great Life with a Neobladder, 25 Years Later

Lionel Cohen is a 25-year bladder cancer survivor and credits his longevity to his decision to opt for a neobladder more than two decades ago, and also to the skill and expertise of Dr. Gary Steinberg, his surgeon. Lionel was diagnosed with non-muscle invasive bladder cancer in 1997 at the age of 65. He is now 89 years young and full of life.  BCAN recently caught up with Lionel and his wife, Anne.

Lionel told us that, like many bladder cancer patients, he had the all-too-common symptom of blood in his urine – and occasionally, he would pass blood clots when urinating.  Lionel recognized that “something was not right,” saw a urologist, and soon after had a cystoscopy.  Unfortunately, it found that he had bladder cancer. 

Lionel’s wife Anne, who accompanied him throughout, said that, during the procedure, the urologist called her into the room.  Anne said, “They showed me that inside the bladder was this thing that looked like a rose. It was beautiful, but it was cancer.”

Wanting to help her husband, Anne then contacted a doctor friend who gave her a grim prognosis based upon what Anne related.   Rallying her family, who wanted to help in any way they could, Anne remembered that one of her children had a connection to the University of Chicago.  That’s where they discovered Dr. Gary Steinberg.  Dr. Steinberg is also the past Chair of the Bladder Cancer Advocacy Network’s Scientific Advisory Board and has been active with BCAN for years.

Anne told BCAN, “We went to see him and he explained everything.  He was an absolute jewel in the sense that he took the time to call me and talk with me. “

Even nearly a quarter century later, Dr. Steinberg remembers Lionel.  He told BCAN, “I remember Lionel and I know that he is a very friendly, warm person and had a lot of friends in his business career. I think he was very knowledgeable and put his faith into my hands many times.”

Lionel recalled that Dr. Steinberg took the time to explain to him exactly what type of surgery he was facing.  Lionel recalls that Dr. Steinberg would also draw him pictures to help him understand.

Dr. Steinberg began doing radical cystectomies with neobladder creation in the fall of 1994 but for Lionel, the procedure was brand new.  Now, years later, he describes living with a neobladder as completely normal.  He told BCAN, “I go to the restroom about every four hours, but besides that, this has been a beautiful story for me.”  He added, “You may have to worry about dripping, but that depends on your fluid intake.”

Like some older bladder cancer survivors, Lionel told BCAN that he began using a catheter in 2012.  “I know some people get scared when they hear that word, but it is honestly not that bad. You are good to go as long as you have the right gel and gloves. Make sure you carry it with you. I have it with me when I travel.”

Dr. Steinberg has been doing radical cystectomies for more than 28 years and stresses that while having one’s bladder removed is major surgery and life event, patients can find happiness living cancer-free.  He told BCAN, “Lionel Cohen’s story is a reflection of fact that with proper surgical technique and expertise, as well as a lot of patient counseling and teaching a urinary diversion can become a patient’s new normal and that they can function remarkably well.”

In addition to being Lionel’s surgeon, Dr. Steinberg also introduced him to the Bladder Cancer Advocacy Network (BCAN).   Lionel recalls attending one of the Walk to End Bladder Cancer in Chicago and seeing Dr. Steinberg there. 

Years beyond his diagnosis and surgery, Lionel is philosophic about his bladder cancer journey.  He told BCAN, “When you hear the word cancer, the normal reaction is, ‘I’m dead.’ And that is not the case. Many more people survive this disease than did when I had my surgery.” 

He added that anyone who experiences any of the signs and symptoms of bladder cancer like blood in the urine should “get off their butt and get to the doctor as soon as possible.” Lionel also noted, “I am excited to share my long-term success story with the bladder cancer community.  There IS life after bladder cancer.”