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Treating bladder cancer with a cystectomy may bring about some complicated side effects. Here are some resources to help.
The risk of some kind of complication after a cystectomy and urinary diversion procedure is about 60 percent, estimates urologic oncologist Marc Smaldone, M.D., of Fox Chase Cancer Center in Philadelphia. Some studies have estimated that as many as one in four patients will require readmission to the hospital within 90 days of undergoing the procedure. In addition to physical issues, people can get depressed after urinary diversion procedures.
“We see that quite often,” Smaldone says. “In a typical survivorship plan, assessing how a patient is dealing emotionally is considered one of the most important parts of follow-up.”
One of the difficult emotional issues some people must deal with after cystectomy is the sexual side effects that often occur as a result of the procedure.
“We remove key organs for sexual function, because we want to make sure we do not leave any cancer behind,”says urologic surgeon Khurshid Guru, M.D., of Roswell Park Cancer Institute, in New York. “Patients must be educated about these sexual side effects and have their expectations managed.”
In some older men with limited sexual function, these side effects may not be as much of a concern, he adds. When patients have limited sexual function prior to the procedure, Guru tries to offer them options before the surgery to help them adapt to new techniques before they face the additional stress of surgical recovery and urinary diversion. These techniques could include the use of medications like Viagra or Cialis, or devices like a vacuum pump. For younger men, there are surgical methods that can be used to preserve the nerves that help them get and maintain an erection. Men continue to produce sperm after cystectomy, and those who want to father children may be able to do so with assistance from a fertility specialist.
In women who wish to remain sexually active, the surgeon may try to reconstruct the vagina in a way that is still functional afterwards, Smaldone says. In women who are premenopausal, Guru will often try to save the ovaries, but if the disease is too aggressive, it may not be possible.
Preparing for a Detour
Experts in the creation and care of stomas or neobladders after cystectomy say that it’s important for patients and their caregivers to prepare for this physical change in advance, by speaking with others who’ve been through such procedures and consulting other educational resources.
Here are a few places you can look for that guidance:
• The University of Rochester Medical Center’s Urology Department offers a patient handbook.
• The American Cancer Society offers its own handbook explaining bladder cancer, its causes, diagnosis and treatments, at: http://tinyurl.com/nkgkuho
• The Bladder Cancer Advocacy Network has partnered with Inspire.com to offer an online community, as well as a stateby- state list of face-to-face support groups.
• At Imermanangels.org, you can request a “mentor angel,” a survivor of bladder cancer who has walked in your shoes and can give you personal counsel.