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.
The vast majority of survivors of childhood cancer have good bladder function. However, bladder damage, including hemorrhagic cystitis, fibrosis, or a bladder that doesn’t grow to a normal size, can occur after treatment with cyclophosphamide or ifosfamide and/or radiation.
Katie started the BMT (bone marrow transplant) conditioning during the final days of April. She had total body irradiation and Cytoxan ® . Day 0 was May 6. We made arrangements to go home on June 6, and wham, she started peeing blood. It was hemorrhagic cystitis from the Cytoxan ® . We stayed for another 2 weeks, Katie was pumped with fluids, and the problem resolved and has not returned.
Survivors who had tumors in the bladder or pelvic area may have received high doses of radiation (4000 cGy or more) 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.
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). Newer treatments combine chemotherapy with removal of part of the bladder. In the majority of cases, survivors retain functional bladders.
Hemorrhagic cystitis occurs when the tiny blood vessels that line the inside of the bladder wall are irritated, causing the vessels to leak blood into the bladder. This condition is caused by cyclophosphamide (Cytoxan ® ) or ifosfamide. Children who were given MESNA (a bladder protector) 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 hemorrhagic cystitis are blood in the urine, lower abdominal pain, frequent and painful urination, an urgent need to urinate, and difficulties with urination.
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.
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:
Difficulty starting 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.
I’m 34 and had neuroblastoma when I was an infant. Last March, I started passing blood in my urine, and it was misdiagnosed as prostatitis. It took a while before I went to a urologist, who did a cystoscopic exam and discovered a 1-inch malignant tumor in my bladder. He said he thought it might be caused by the abdominal radiation and cyclophosphamide I had so long ago.
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 with experience treating survivors of childhood cancer.
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. It is important to brush your teeth often.
We let her design her water bottle the way she liked it. She painted it and considered it her personal water bottle. It was insulated and helped to keep the water really cold.
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.
Children who had surgery to provide a urinary diversion need physical and psychological support as they grow. These services can be found at a comprehensive follow-up center.
Table of ContentsAll Guides
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating the System
- 5. Staying Healthy
- 6. Diseases
- 7. Fatigue
- 8. Brain and Nerves
- 9. Hormone-Producing Glands
- 10. Eyes and Ears
- 11. Head and Neck
- 12. Heart and Blood Vessels
- 13. Lungs
- 14. Kidneys, Bladder, and Genitals
- 15. Liver, Stomach, and Intestines
- 16. Immune System
- 17. Muscles and Bones
- 18. Skin, Breasts, and Hair
- 19. Second Cancers
- 20. Homage
- Appendix A. Survivor Sketches
- Appendix B. Resources
- Appendix C. References
- Appendix D. About the Authors
- Appendix E. Childhood Cancer Guides (TM)