Cystectomy after Childhood Cancer

Some cancer survivors have had an operation to remove their bladder (cystectomy) as part of their cancer treatment or because of treatment complications. Here's what you need to know to recognize the signs and symptoms urinary problems that may occur after cystectomy.

What is Cystectomy?

Cystectomy is an operation to remove the urinary bladder. After the bladder is removed a new passage is created for urine to leave the body. The three main procedures used are called ileal conduit, cutaneous continent diversion, and orthotopic neobladder.

Ileal Conduit or Urostomy

A loop of small intestine is removed and used as a pipeline through which urine flows from the ureters to an opening on the outside the body (stoma). There it is collected in a pouch.

Cutaneous Continent Diversion

A small pouch made from intestine is placed inside of the abdomen to collect urine from the ureters (ileal pouch). The appendix or another piece of intestine is used to create an extension from the pouch to an opening on the surface of the skin. Urine is removed several times a day from the pouch by inserting a tube (catheter) into the opening.

Orthotopic Neobladder

A new bladder is made from bowel and connected directly to the urethra. Some people are able to urinate naturally. Others need to use a catheter.

What Problems Can Occur after Cystectomy?

If you have an ileal conduit or ileal pouch, urine may leak around the opening on the surface of your skin and cause irritation or infection. Scar tissue may form around the ureters or the conduit and block the flow of urine from the kidneys. Back flow of urine into the kidneys may also occur, which raises risk for urinary tract infection and kidney stones.

If you have a neobladder, you might not be able to control when you urinate. Muscle retraining can help, though. If you have ongoing urine leakage, testing of the neobladder and urethra can help decide next steps.

People who have had surgery that involves the small intestine sometimes have levels of chemicals and fats in the blood that are not normal. This can cause diarrhea, kidney stones, and low levels of vitamin B12.

Cystectomy may also increase the risk for sexual problems. Surgery and medicine may be helpful.

Should I Be Screened for Urinary Problems?

If you had a cystectomy, you'll need life-long close follow-up by a doctor who specializes in the urinary tract (urologist). An enterostomal nurse ("ET nurse") can give you advice about skin care and supplies. The nurse can also help resolve any problems with catheters.

If you had bladder surgery that involved your small intestine, you should have a blood test every year to check your vitamin B12 level starting 5 years after your surgery. This can be part of your annual long-term follow-up visit.

When Should I Contact My Doctor?

Call your doctor if you have these symptoms:

  • fever,
  • pain in your mid-back or side,
  • blood in your urine, or
  • severe skin irritation.

Call your doctor right away if you have vomiting or abdominal pain. These symptoms might signal a blockage in your bowel from scar tissue.

Go to the emergency room if you perform self-catheterization and you have trouble inserting the catheter. This is an emergency that needs to be evaluated right away in case your pouch might rupture.

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