Health Link

Healthy living after treatment of childhood, adolescent, and young adult cancer

Late Effects after Cystectomy
The information in this Health Link will help you recognize signs and symptoms of urinary bladder problems that may
occur after cystectomy.
What is a cystectomy?
A cystectomy is an operation to remove the urinary bladder.
Who needs a cystectomy?
Two groups of cancer survivors may have undergone a cystectomy during their childhood cancer treatment. The
first group includes those who had a cystectomy as part of their cancer treatment. Successful treatment of
rhabdomyosarcoma of the urinary bladder and prostate, Ewing’s sarcoma, and other sarcomas in the pelvic area
sometimes requires cystectomy. The second group includes people who required a cystectomy because of treatmentcomplications, such as hemorrhagic cystitis (bleeding) or bladder fibrosis (scar tissue).
How does urine exit the body after a cystectomy?
After the urinary bladder is removed, a new passageway is created so that urine can leave the body. Urine is removed
from the kidney in a process called “diversion.” There are three main types of diversions, based on whether urine flows
from the body spontaneously (“incontinent diversion”) or is collected in a reservoir (“continent diversion”).
An “incontinent diversion” is usually made through a loop of small intestine that is separated from the rest of thebowel and called an “ileal conduit” or “urostomy.” The ileal conduit is connected to the outside of the abdomen byway of an opening called a “stoma”. Internally, the ureters empty into the conduit, which then serves as a pipeline forurine to flow directly through the stoma.
There are two types of “continent diversions.” The first is the cutaneous continent diversion. This reservoir is madefrom intestine and is placed within the abdomen in front of the kidneys. The ureters are then connected to this pouch.
The appendix or another short piece of small intestine is used to create an extension from this pouch through theabdominal wall to the surface of the skin, often around the belly button. This opening is called a “stoma.” This design
prevents urine from flowing back into the kidney (reflux) or spilling out onto the skin. Urine collects in the reservoir andis removed several times a day by insertion of a catheter (tube) into the stoma.
The second type of continent diversion is done by making a new bladder from bowel and is called an “orthotopicneobladder.” The neobladder is connected directly to the urethra. Some people with a neobladder can urinate naturally,
while others may require catheterization to empty the bladder.
What problems can occur following cystectomy?
People who have an ileal conduit or ileal pouch may have leakage of urine around the stoma. This may lead to irritationof the skin and infection at the site of the stoma. Scar tissue (“strictures”) may form around the ureters or the conduitand block the flow of urine from the kidneys. Reflux of urine into the kidney may also occur, which increases the risk ofa urinary tract infection or kidney stones.
Incontinence, or the inability to control passage of urine, may occur after a neobladder is formed. People with thisproblem may benefit from muscle re-training to control urination effectively. If there is persistent leakage of urine,pressure testing of the neobladder and urethra may help decide about treatment.

Copyright 2023 © Children’s Oncology Group. All rights reserved worldwide.

Cystectomy | Version 6.0 | October 2023 | Page 1 of 3

Health Link

Healthy living after treatment of childhood, adolescent, and young adult cancer

Bladder surgeries involving portions of the small intestine sometimes cause abnormal levels of chemicals and fats inthe blood. These problems may result in diarrhea, kidney stones, and/or low levels of Vitamin B12.
A cystectomy may also increase the risk of sexual dysfunction in both men and women. Surgery and medications
may be used to treat this complication.
What can I do if I have a problem following cystectomy?
If you have had a cystectomy, you will need life-long close follow-up by a urologist. An enterostomal nurse(“ET nurse”) can help by giving advice about skin care, appliance fitting, and supplies. The nurse can also help
“troubleshoot” if there are problems with catheterization.
What monitoring is recommended?
If you had an ileal enterocystoplasty (bladder surgery involving a portion of the small intestine), you should have ayearly blood test to check your Vitamin B12 level starting 5 years after your bladder surgery.
When should I call my healthcare provider?
Call your healthcare provider whenever you have fever, pain in the midback or side, blood in the urine, or severe
irritation of the skin. If you perform self-catheterization and have difficulty inserting the catheter, this is a medical
emergency that needs immediate attention. This complication may mean that the pouch has ruptured, or that thepouch will rupture if the reservoir cannot be drained properly. This can result in serious infection from leakage of urine
into the abdomen or pelvis. If you have had a cystectomy, contact your healthcare provider immediately if you havevomiting or abdominal pain. These symptoms may indicate a bowel blockage (obstruction) from scar tissue.
Written by Patricia Shearer, MD, MS, Emory Healthcare, Johns Creek, GA; Michael L. Ritchey, MD, Phoenix Childrens Hospital,Phoenix, AZ; Fernando A. Ferrer, MD, Children’s Hospital and Medical Center of Omaha, Omaha, NE; and Sheri L. Spunt, MD, Lucile
Packard Children’s Hospital Stanford University, Palo Alto, CA.
Reviewed by Linda Rivard, RN, BSN, CPON; Kayla L. Foster, MD, MPH; and Christine Yun, MSN, PNP, CPON.

Additional health information for childhood cancer survivors is available atwww.survivorshipguidelines.org
Note: Throughout this Health Links series, the term “childhood cancer” is used to designate pediatric cancers that may occur during childhood, adolescence, or young adulthood.
Health Links are designed to provide health information for survivors of pediatric cancer, regardless of whether the cancer occurred during childhood, adolescence, or young
adulthood.
Disclaimer and Notice of Proprietary Rights
Introduction to Late Effects Guidelines and Health Links: The Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers and accompanying Health
Links were developed by the Children’s Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s
Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces.
To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a
medical condition and do not rely on the Informational Content. The Children’s Oncology Group is a research organization and does not provide individualized medical care or treatment.
To physicians and other healthcare providers: The Informational Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate
criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Informational Content intended to exclude other reasonable
alternative follow-up procedures. The Informational Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The
Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider.
No endorsement of any specific tests, products, or procedures is made by Informational Content, the Children’s Oncology Group, or affiliated party or member of the Children’s Oncology Group.
No Claim to Accuracy or Completeness: While the Children’s Oncology Group has made every attempt to assure that the Informational Content is accurate and complete as of the date of publication, nowarranty or representation, express or implied, is made as to the accuracy, reliability, completeness, relevance, or timeliness of such Informational Content.

Copyright 2023 © Children’s Oncology Group. All rights reserved worldwide.

Cystectomy | Version 6.0 | October 2023 | Page 2 of 3

Health Link

Healthy living after treatment of childhood, adolescent, and young adult cancer
No Liability on Part of Children’s Oncology Group and Related Parties/Agreement to Indemnify and Hold Harmless the Children’s Oncology Group and Related Parties: No liability is assumed
by the Children’s Oncology Group or any affiliated party or member thereof for damage resulting from the use, review, or access of the Informational Content. You agree to the following terms ofindemnification: (i) “Indemnified Parties” include authors and contributors to the Informational Content, all officers, directors, representatives, employees, agents, and members of the Children’s Oncology
Group and affiliated organizations; (ii) by using, reviewing, or accessing the Informational Content, you agree, at your own expense, to indemnify, defend and hold harmless Indemnified Parties from any
and all losses, liabilities, or damages (including attorneys’ fees and costs) resulting from any and all claims, causes of action, suits, proceedings, or demands related to or arising out of use, review oraccess of the Informational Content.
Proprietary Rights: The Informational Content is subject to protection under the copyright law and other intellectual property law in the United States and worldwide. The Children’s Oncology Groupretains excursive copyright and other right, title, and interest to the Informational Content and claims all intellectual property rights available under law. You hereby agree to help the Children’s Oncology
Group secure all copyright and intellectual property rights for the benefit of the Children’s Oncology Group by taking additional action at a later time, action which could include signing consents and legal
documents and limiting dissemination or reproduction of Informational Content.

Copyright 2023 © Children’s Oncology Group. All rights reserved worldwide.

Cystectomy | Version 6.0 | October 2023 | Page 3 of 3