Getting Back to Life After Reconstructive Bladder Cancer Surgery
Patient Helps Raise Awareness About Women and Bladder Cancer
A few days after having a mass removed from her bladder in May 2009, Jacqueline Nalls listened in disbelief as her urologist explained the results of the tumor biopsy. "He told me, 'You have bladder cancer, it’s serious and you need to move quickly,’" recalled the 54-year-old from Richton Park, Ill. "I was shocked."
The next news came just as hard. Surgery at her community hospital would involve removal of her bladder (cystectomy) and a permanent bag outside of her body to catch urine. Before moving ahead, the urologist suggested she consult with the University of Chicago Medicine’s Gary Steinberg, MD, calling him the best bladder cancer surgeon in the Midwest.
Within a week, Nalls met with Steinberg, director of urologic oncology at the medical center and an internationally known expert in bladder cancer and urinary tract reconstruction.
"I was amazed to learn that a new bladder could be made from my intestines so I wouldn’t have to live with an external bag to collect urine, " Nalls said.
"Jackie was an excellent candidate for reconstructive surgery," Steinberg said. "While her cancer had grown into the muscle layer of the bladder wall, it had not reached the fatty tissue surrounding the organ or spread to her lymph nodes or other sites."
She was also in great physical shape. Two years earlier, the human resources professional and abstract artist decided it was time to take better care of her health. Through diet and exercise, she lost 40 pounds and lowered her blood pressure. After three attempts, she successfully quit her one-pack-a-day smoking habit.
Steinberg performed the four-hour radical cystectomy and lymph node dissection in late June 2009. After removing Nalls’ bladder, he fashioned a new bladder from a portion of her small intestine. Shaped like a spherical pouch and acting as an internal reservoir for urine, the new, or neobladder, was then connected to the ureters and the urethra, allowing urine to pass through much like a normal bladder. Because bladder cancer can recur in the reproductive organs, Steinberg also performed a complete hysterectomy and removed nearby lymph nodes.
Steinberg’s team performs more than 150 bladder removals annually and creates neobladders for 45 to 50 percent of patients with bladder cancer who need the organ removed. "We take care of the cancer and make the patient feel whole again," he said. "And we get them back to what they want to do." In the future, a patient’s new bladder may be created in a lab using his or her own stem cells. Steinberg is the principal investigator on a clinical trial now testing this type of regenerative medicine at the University of Chicago Medicine and one other center in the country.
Throughout her surgery and recovery, Nalls had the unwavering love and support of her husband, Oscar, and her family. She embraced the attitude suggested by a close friend: "No fear -- just faith, Jackie," calling it her mantra the whole time. "I was able to recover quickly and remain positive in the belief that with faith in God, you can do anything," she said.
Nalls also found support from one of Steinberg’s former patients. "Speaking to her gave me so much hope," she said. "I was going to beat cancer and live a long life."
Women and Bladder Cancer: Spreading the Word
Like many women with bladder cancer, Nalls didn’t recognize the symptoms or consider the diagnosis. She wasn’t aware that smoking was a risk factor. Both she and her internist attributed back pain to arthritis. When a CT scan confirmed joint disease in her spine, she took pain medicine – but it didn’t help and her pain worsened. After she experienced urinary incontinence and leakage, Nalls sought help from her obstetrician/gynecologist.
"I asked him to check an existing polyp and to rule out endometrial, cervical and ovarian cancer," Nalls recalled. A test showed blood in her urine and an ultrasound revealed the mass.
"It’s not unusual for a bladder cancer diagnosis in a woman to be missed for a year or more," Steinberg explained. "For a woman, the most common symptom - blood in the urine – may not be noticed or may be attributed to a urinary tract infection."
Steinberg says while bladder cancer is one of the top 10 most common cancers in this country, knowledge and research funding are low compared to other cancers. In 2005, Steinberg helped create the Bladder Cancer Advocacy Network (BCAN), a national organization dedicated to raising awareness, advancing research and providing support and education for the bladder cancer community. He has been the chairman of the BCAN scientific advisory board for the past four years.
When Steinberg encouraged Nalls to become involved with BCAN, she responded with drive and enthusiasm. "After I recovered, I felt so blessed," she said. "I wanted to help." Nalls assisted BCAN in a project to send bladder cancer brochures to every urology office in Illinois. Telling her story through a "Write for the Cure" letter to family and friends, she raised more than $1,000 for the organization. She has spoken to patients, support groups and physicians. Twice the BCAN Volunteer of the Month, she recently joined their newly formed Women’s Initiative Task Force.
"Having cancer changed my perspective on life and death and gave me a purpose," Nalls said. "It taught me how important it is to help others and give back."
In May 2012, Nalls and Steinberg participated in the annual Walk for Bladder Cancer benefiting BCAN, going the two-mile route around Lake Arlington in Arlington Heights, Ill., together. "Jackie epitomizes the bladder cancer survivor today," Steinberg said. "She is active, going after her goals and living life."