Organ damage in females

Very few girls get tumors in the vagina or uterus. However, some female children or teens with tumors in the pelvic area (i.e., rhabdomyosarcoma, Ewing sarcoma, osteosarcoma) get high-dose radiation that can affect the growth and development of the vagina and/or uterus. Lower doses of radiation, when used with some types of chemotherapy that enhance radiation (e.g., dactinomycin and doxorubicin), can cause the same long-term effects as high-dose radiation alone.

Some female survivors who had abdominal tumors treated with radiation have permanent changes in the size and function of the uterus. These late effects are more likely in girls treated before puberty with more than 2000 cGy of radiation. The uterus of a girl treated after puberty usually is not damaged unless more than 4000 cGy of radiation is used. Radiation can stunt the growth of the uterus and can also cause it to become scarred (fibrotic) and less elastic. This type of damage to the uterus can cause miscarriages of pregnancies or low birthweight children. It occurs most often in survivors of Wilms tumor who had more than 2000 cGy of abdominal radiation and in Hodgkin lymphoma survivors who had radiation to the abdomen and chemotherapy (but not either alone).

Girls or teens who had more than 4000 cGy of radiation to a field that included the vagina can develop fibrosis (tissue gets scarred and tough and doesn’t stretch well) and diminished vaginal development. This problem can also occur after lower doses of radiation if radiation-enhancing chemotherapy drugs (e.g., dactinomycin) are also given. Fibrosis can affect the size and flexibility of the vagina, which can alter sexual function and the ability to deliver babies vaginally.

Organ damage in males

Male children or teens who had high-dose radiation to the abdomen for rhabdomyosarcoma, Ewing sarcoma, or osteosarcoma are at risk for damage to the prostate gland and the nerves that control sexual functioning. Boys or teens with testicular cancer or relapsed leukemia (in the testes) usually have a testicle removed and the area irradiated.

Low doses of radiation to the prostate can slow or stop the development of this organ. High doses (more than 5000 cGy) can cause the organ to atrophy (shrink). Because the prostate produces part of the fluid that makes semen, damage to it can reduce or eliminate ejaculation. Nerve damage from surgery or radiation can affect the ability to have an erection and can also affect ejaculation.

Survivors who had radical lymph node dissections (removal of many lymph nodes in an area of the body) sometimes accumulate excessive fluid in the testicles (called hydrocele). This late effect has been seen in long-term survivors of Hodgkin lymphoma, Wilms tumor, and paratesticular rhabdomyosarcoma.

Screening and detection for males and females

Frank discussions with your healthcare provider about changes in your sexual organs or sexual function are essential to identify and treat these late effects. Many people (including some healthcare providers) feel uncomfortable talking about sex and sexuality. However, sexuality is a vital part of your life that influences your sense of self and quality of life. Find a healthcare provider you trust who is comfortable discussing these issues so you can explore all of your options to address late effects involving your genitals.

Male survivors. Healthcare providers for males should take an age-appropriate history that focuses on any problems with libido (sex drive), sexual function, or fertility. For males, the prostate gland is felt manually, and sometimes an ultrasound of the organ is done to evaluate size. Late effects involving the testicles are covered in Chapter 10, Hormone-Producing Glands.

Female survivors. Healthcare providers for female survivors should take an age-appropriate history that focuses on any problems with libido, sexual function, or fertility. Female children and teens need regular evaluation of their sexual development to ensure that puberty is proceeding normally. Women and sexually active teens should have a yearly pelvic examination. This exam may need to be done under anesthesia or sedation for women or teens who have small vaginas or vaginal fibrosis. The uterus can be evaluated using ultrasound, computed tomography (CT) scan, or magnetic resonance imaging (MRI). Abdominal radiation that included the ovaries requires extensive evaluation, outlined in Chapter 10, Hormone-Producing Glands.

Medical, surgical, and psychological care

Females. Female teens and women with late effects that alter sexual functioning or fertility need to be referred to a gynecologist (a medical doctor specializing in the female reproductive system) and/or endocrinologist (a medical doctor specializing in the body’s hormone-producing glands) for further evaluation, testing, and treatment. Women or female teens with vaginal late effects may need vaginal dilations (expansion of the vagina using tube-shaped devices) or reconstructive surgery. Survivors should consult a gynecologist with extensive experience doing these procedures. A woman with a small uterus or who has uterine fibrosis (scarring of the uterus) needs counseling about pregnancy. Pregnant women who had pelvic radiation should get their prenatal care from an obstetrician who specializes in high-risk pregnancies.

Males. Male teens or men with late effects that alter sexual functioning or fertility need to be referred to a urologist (doctor specializing in the reproductive tract of men) and/or endocrinologist (doctor specializing in the body’s hormone-producing glands) for further evaluation, testing, and treatment. Males who had a testicle removed may want to discuss having a prosthesis (artificial body part) implanted. Those who develop a hydrocele usually have the fluid surgically drained.

Any survivor with sexual problems that result from treatment for childhood cancer needs both medical and psychological follow-up. A team approach that provides psychological help to address concerns about body image, fertility, or sexuality is crucial.

Centers with childhood cancer survivors’ programs have multidisciplinary teams that include psychologists and social workers who are familiar with survivors’ sexual issues and concerns. They can provide information, support, and one-on-one assistance with how to address these issues in relationships.