Childhood Cancer Survivors
Bladder
The bladder is a muscular bag located in the lower pelvis. The ureters from the kidneys carry urine to the bladder. Urine collects in the bladder until it is full. When the muscle of the bladder signals the brain that it is full, the brain orders muscle contractions that squeeze the urine out of the bladder. The urine flows through a tube called the urethra to the outside of the body.
Organ damage
The vast majority of survivors of childhood cancer have good bladder function. However, bladder damage, including hemorrhagic cystitis (blood leaking into the bladder from irritated blood vessels inside the bladder wall), fibrosis (scarring or hardening of the tissue in the bladder), or a bladder that doesn’t grow to a normal size, can occur after treatment with cyclophosphamide or ifosfamide and/or radiation.
My advice to other survivors and parents is to listen to the doctors but trust your instincts. If the doctors tell you something, and it doesn’t feel right to you, ask follow-up questions. Our daughter was born with a rare bladder birth defect which we knew while I was pregnant, but that defect turned out to be a blessing in disguise. After her first surgery at one month to correct the bladder condition, they found the cancer, neuroblastoma. If she had not had that bladder surgery, they wouldn’t have discovered the neuroblastoma as early. It was a rapidly developing cancer that went from non-existent to stage 4 in a month and a half, so it was a blessing that they found it early-on.
Radiation
Scarring and strictures. Survivors who had tumors in the bladder or pelvic area may have received high doses of radiation that can scar their bladders. A scarred (fibrotic) bladder does not stretch to hold urine or contract well to empty. A bladder that does not grow (or shrinks due to fibrosis) may meet the needs of a preschooler, but will be too small for an older child. Thus, intervention may be necessary years after treatment even though the injury to the organ has not progressed. Radiation can also cause narrowing (strictures) in the urethra, which causes difficult, painful urination.
Chemotherapy
Hemorrhagic cystitis. This condition is caused by cyclophosphamide (Cytoxan®) and ifosfamide. Children who were given mesna (a drug given with some types of chemotherapy to help protect the bladder from inflammation and serious bleeding), or who received cyclophosphamide by IV with lots of fluids to flush it through the bladder, rarely get cystitis. Survivors most at risk for hemorrhagic cystitis are those who:
Received cyclophosphamide and/or ifosfamide for long periods of time with minimal flushing through the system.
Had hemorrhagic cystitis during treatment and the problem persists. It does not tend to spontaneously occur years later.
Signs and symptoms of bladder damage
Hemorrhagic cystitis. Signs and symptoms of hemorrhagic cystitis are blood in the urine, lower abdominal pain, frequent and painful urination, an urgent need to urinate, and difficulties with urination.
Bladder scarring and bleeding ulcers. Radiation damage to the bladder can cause bleeding ulcers and scarring in the bladder. Survivors with this condition may have little or no bladder control (wetting or leakage) or may have to urinate very frequently.
Screening and detection
All survivors who had therapies that can harm the bladder should have a baseline and then yearly urinalysis. An assessment of the function of the urinary system also includes asking questions about the following:
Incontinence
Urine dripping
Difficulty starting urination
Painful urination
Inability to completely empty the bladder
Survivors with hemorrhagic cystitis are at risk for bladder cancers and thus need education about signs and symptoms, as well as yearly evaluations.
Medical, surgical, and psychological care
Hemorrhagic cystitis. If you had treatment that could damage your bladder, and your urine test shows blood, it should be repeated in a week. If it is still positive, you should request a referral to a urologist (a medical doctor who specializes in diagnosis and treatment of the urinary system in men and women and also the reproductive system of men) with experience treating survivors of childhood cancer.
Chronic bladder infections. Survivors with chronic bladder infections need to drink lots of fluids. This can be challenging for parents of younger children. The following are suggested ways to encourage young children to drink more.
Fill water bottles halfway, add a drop of food coloring, then freeze. Then add cold water to fill and add a different color.
Use different kinds of cups with crazy-shaped straws.
Flavor crushed ice with juice.
Freeze juice in ice trays and add to drinks.
Make juice popsicles.
Some survivors are at risk for cavities and obesity, so drink juice and energy drinks in moderation. Consider using flavor options lower in sugar and calories. It is important to brush your teeth often.
Scarred bladders. Bladder-stretching surgery for survivors with scarred bladders has not been very successful. At some large, university-affiliated children’s hospitals, new surgical techniques are being developed to increase bladder size (called bladder augmentation) by stitching in pieces of tissue from other parts of the body. If you have a fibrotic bladder, occasional visits to specialists in the field at large pediatric hospitals can alert you to the newest developments in treatment.
Complete or partial bladder removal. Treatment for tumors in the bladder or pelvic area once included total removal of the bladder and placement of a urinary diversion (surgery that allows urine to flow out of the body through a tube in the abdominal wall). Children who had a urinary diversion need physical and psychological support as they grow. Such services can be found at childhood cancer survivors’ clinic.
Newer treatments combine chemotherapy with removal of part of the bladder. In the majority of cases, survivors retain functional bladders.
Table of Contents
All Guides- Acknowledgements
- Contributors
- Foreword
- Preface
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating The System
- 5. Staying Healthy
- 6. Genetic Testing And Childhood Cancer
- 7. Diseases
- 8. Fatigue
- 9. Brain And Nerves
- 10. Hormone-Producing Glands
- 11. Eyes And Ears
- 12. Head And Neck
- 13. Heart And Blood Vessels
- 14. Lungs
- 15. Kidneys, Bladder, And Genitals
- 16. Liver, Stomach, And Intestines
- 17. Immune System
- 18. Muscles And Bones
- 19. Skin, Breasts, And Hair
- 20. Subsequent Malignancies
- About The Editors
