Creating a Diversion: Life After Cystectomy for Bladder Cancer

“Life has its challenges, and this has certainly been one of them, but it has not been devastating. Life goes on.” - William O’Brien, patient [PHOTO BY JULIE BERTONAZZI]

When William O’Brien was diagnosed with bladder cancer at 75, he fit the profile of the average patient with the disease.

But for O’Brien, the day he showed his first symptom, and life since that day, has been anything but average. At the time, he and his wife, Jackie, belonged to a breakfast club that met every week on Wednesdays.

“I was at breakfast and had to go to the men’s room, and instead of urine, pure blood came out,” O’Brien recalls. “That was the first sign that there was anything wrong with me.”

O’Brien made an appointment to see his local urologist in what would be the first step of many toward ultimately undergoing a radical cystectomy to remove his bladder and learning to live life with a neobladder, a new bladder made of intestine.

THE FACTS ABOUT BLADDER CANCER

Adjusting to life after his cystectomy has not been as bad as he anticipated, O’Brien says, mostly because his surgical team, led by urologic oncologist Marc Smaldone, M.D., at Fox Chase Cancer Center in Philadelphia, was very helpful in preparing him and explaining what to expect.Bladder cancer will be diagnosed in more than 76,000 people in 2016, with an estimated 16,000 deaths. The most common type of bladder cancer is transitional cell carcinoma — or urothelial carcinoma — which starts in the cells inside of the bladder. How invasive a bladder cancer is refers to how deeply it has traveled into the bladder wall. About 70 percent of patients are diagnosed with non—muscle-invasive bladder cancer and can be treated with surgery to remove just the tumor. However, about 30 percent of bladder cancers are considered muscle-invasive, where the tumor has invaded the muscle lining the bladder, and usually require surgery to remove the bladder and some surrounding organs, called cystectomy. Although partial cystectomy is performed in select patients, leaving enough bladder to hold urine, most patients will undergo a complete cystectomy.

“If someone is told that they have muscle-invasive disease and that they need cystectomy, they should speak with their doctor or surgeon about the possibility of receiving neoadjuvant, or pre-surgical, chemotherapy,” says urologic surgeon Khurshid Guru, M.D., of Roswell Park Cancer Institute.

The five-year survival rate after cystectomy is about 65 percent. However, a 2003 study showed that receiving chemotherapy prior to cystectomy improves survival among patients with locally advanced disease.

During the procedure, men will have the bladder, nearby pelvic lymph nodes, prostate, seminal vesicles and part of the vas deferens removed, explains Smaldone. In women, the bladder, fallopian tubes, uterus, cervix and upper one-third of the vagina are removed.

Prior to surgery, the patient and physician should discuss options for redirecting urine, or urinary diversion, once the bladder is removed.

“It is only natural that when you remove the bladder you have to divert the urine and remove it from the body,” Guru says.

The easiest and most common urinary diversion is the ileal conduit, according to Guru. In this procedure, the surgeon takes a small section of the ileum, or the small intestine, and attaches it to an opening made in the skin of the abdomen, creating what is known as a stoma. A bag is affixed to the stoma, worn externally and used to collect urine.

Another urinary diversion option is the use of an internal storage pouch for urine, sometimes called an Indiana pouch. Here the surgeon creates a sphere or pouch inside the abdomen using a combination of small and large intestine. The surgeon connects the pouch to the skin in the abdomen and a stoma is created. An Indiana pouch does not use an external pouch to collect the urine; instead, patients must learn to drain the internal pouch periodically by inserting a catheter through the stoma.

The third urinary diversion option is the creation of a neobladder. To create this new bladder, the surgeon will use part of the small intestine to create a sphere to serve as the bladder. This sphere is connected to the urethra, through which the patient can pass urine out of the body.

Smaldone estimates that about 85 percent of patients who undergo cystectomy will have an ileal conduit procedure.

CARING FOR A STOMA OR NEOBLADDER

“The other procedures are less common for a variety of reasons,” Smaldone says. “With any continent diversion, the patient will have to be physically able and willing to catheterize, and for either technique creating an internal reservoir, the patient has to tolerate a longer operation, have good kidney function and be willing to have a longer hospital stay and a more difficult recovery.”“I encourage all patients to talk to other patients who have received all these types of diversion to help give them a feel of what it will be like,” Guru says. “All types of diversions have pros and cons.”

People living with a stoma and an external bag often have difficulty with body image issues, Smaldone explains. The bag may leak or have odors, and the urine could back up into the kidney, leading to infection. People who have an Indiana pouch procedure must learn how to catheterize the stoma at regular intervals. They can experience leakage of urine or irritated skin at the stoma site. Neobladder procedures require patients to learn to sense when the intestinal pouch is full because the nerves that once sent that message to the brain have been removed.

“Patients with a neobladder may experience leakage, especially at night, and it may take time to learn to empty the bladder efficiently,” Smaldone says.

When he was released from the hospital after his cystectomy procedure, O’Brien admits that it took him some time to adjust to his neobladder.

CAREGIVER ROLE

“I had to wear Depends all the time, because I was not always sure what was going on with the neobladder,” O’Brien says. “But, over time, I learned to recognize when the bladder was full and had to be emptied. The only times I lose control now are when I am not in a position to empty out or if I get to laughing too hard.”Caregivers play an important role in helping patients adjust to life after cystectomy. Smaldone encourages caregivers to be as supportive as possible and to immerse themselves in the education process during the preoperative and hospitalization stages.

“You have to be as hands-on as possible,” Smaldone says. “When the patient goes home, that is when the real work begins.”

Caregivers may have to help patients adjust to using their urinary diversion. Often, visiting nurses will help patients adjust to using a stoma or catheterizing a pouch in the weeks immediately after surgery. During this time, caregivers should learn as much as they can.

Caregivers should also be on the lookout for complications related to the stoma or neobladder.

“Most problems have symptoms that are not so subtle,” Smaldone says.

These symptoms may include problems with leakage or skin excoriation around the stoma site, or something more serious such as a urinary tract infection or fever, another potential indication of infection. Patients need to stay hydrated immediately after the procedure, drinking about two to three liters a day, Guru says.

“One of the biggest risk factors for pelvic operations is developing a blood clot, which can debilitate or kill a patient,” Guru says. “It is important that caregivers help to ambulate the patient — keep them moving.”

O’Brien says that he cannot put into words how helpful his wife Jackie has been to him throughout this experience. Jackie says her advice to other caregivers is to remember to hang in there.

“Things get easier,” she adds. “Just knowing that you are a help to the patient is so rewarding.”

Although there was definitely an adjustment period, Jackie says it was not nearly as bad as she anticipated.

“I will tell you why,” Jackie says. “Our doctors were so helpful explaining everything.”

In fact, a 2011 study published in Advances in Urology reviewed several clinical trials comparing health-related quality of life for different urinary diversion options among patients who underwent radical cystectomy for bladder cancer. The study showed that no one method produced better quality-of-life outcomes, but that better quality of life was related to patient education and consideration of each patient’s individual situation.

Smaldone could not agree more.

“The education piece preoperatively is the hardest part,” he says. “Timely treatment results in better survival outcomes for bladder cancer. Since treatment decisions get made very quickly, a tremendous amount of new information gets thrown at patients in a short period of time, and it is very easy to get overwhelmed.”

To be better prepared for the possible challenges ahead, Smaldone and Guru encourage patients to talk to as many people as possible who have been through the procedure.

“These are complex procedures, and we have to make sure that patients and their loved ones have a good understanding of the expected short- and long-term recovery process before they reach the operating room,” Smaldone says.

That is exactly what William and Jackie O’Brien did, and they say they have handled the adjustment to life with a neobladder very well.

“Life has its challenges, and this has certainly been one of them, but it has not been devastating,” O’Brien says. “Jackie and I still have a very active social life. Just this morning we went to our breakfast club again. Life goes on.”