Fertility Questions for Childhood Cancer Survivors

This page is for childhood cancer survivors and their families who have questions about fertility, puberty, and hormones. It explains what to gather, what to ask, and when.

No honest answer about fertility can be given in general. It depends on which drugs the child received, how much, and where any radiation was aimed. So the first thing to find is not an article. It is a record of the treatment.

Useful items to gather:

• every chemotherapy drug and its total dose
• every radiation area and dose
• every surgery
• whether there was a stem cell transplant

If nobody has handed you that record, ask for it now. Call the treating hospital's survivorship clinic or medical records office. Do it before the survivor changes doctors, moves, or ages out of pediatric care.

NCI says alkylating agents are a high risk to fertility. In girls and women they can cause the ovaries to stop developing mature eggs. In boys and men they can damage sperm and the cells that make sperm. NCI notes that higher doses, or several drugs together, raise the risk of infertility.

Radiation matters by target. NCI lists radiation to or near the reproductive organs as a risk. Radiation to the brain may also affect glands, such as the pituitary gland, that send signals to the ovaries and testicles. NCI's late effects summary also names total-body irradiation and stem cell transplant as treatments linked to reproductive effects.

A child who has not been through puberty has a narrower set of choices. NCI describes ovarian tissue freezing as an option for girls before puberty or for those who cannot delay treatment. For boys, NCI says testicular tissue freezing is an option for young boys who have not been through puberty, and that clinical trials of it are ongoing. If a young child is about to start high-risk treatment, ask directly whether a tissue option is open at your center or at another one.

A teen who has been through puberty has more choices. NCI calls sperm banking the most common method for males who have gone through puberty, and says sperm can be frozen for an indefinite time. For females, NCI lists freezing mature eggs, or freezing embryos made in a laboratory.

Two more options do not bank anything. Ovarian transposition is surgery that moves the ovaries away from the radiation area. Ovarian shielding places lead protection over the reproductive organs during radiation. Both must be decided before radiation begins.

Many preservation options have to happen before treatment starts. NCI advises talking about fertility before treatment begins.

NCI reports something worth telling parents who feel rushed. Survivors were less regretful if they had met with a fertility specialist, whether or not they chose to preserve anything. The meeting itself has value. It is reasonable to ask the oncologist for that referral on the day of diagnosis. It is also reasonable to ask whether treatment can safely wait for the steps involved.

After treatment, ask the survivorship team which tests fit your child's exposures and age. NCI's late effects summary says follow-up should include checking hormone levels and reproductive function for survivors whose treatment reached the pituitary, the reproductive organs, or the whole body.

Test results describe the current picture. They do not promise a future one. Ask the team what a result does and does not mean.

A survivor can be fertile and still need hormone care, or be infertile with normal hormones. Keep the two questions apart when you talk to the clinic.

NCI says cancer treatment can cause primary ovarian insufficiency, when the ovaries do not work as they should. It can lead to early menopause. It can also lower bone density and cause osteoporosis. Ask your team whether your child needs bone checks or hormone treatment.

Nothing on this list is an emergency. All of it is worth a call rather than a wait.

• Call your care team within a day or two if menstrual periods become irregular or stop. Call too if hot flashes, night sweats or vaginal dryness begin at an age when menopause would not be expected. NCI lists these among the signs of primary ovarian insufficiency. Estrogen loss affects bone strength as well as fertility.
• Call your care team within a day or two if low energy, flat mood, or loss of interest in sex has settled in and will not lift. NCI lists mood changes and lower sexual interest among the signs of ovarian insufficiency, and low energy and mood changes have many other causes too. They are worth saying out loud.
• Ask for a survivorship appointment if puberty has not started when expected, or stalls once it has begun. Also ask after a year of trying to conceive without success, or six months if the woman is older than 35. That is how NICHD defines infertility.

How much to tell the survivor depends on their age. Young children need almost nothing. "The medicine works on fast-growing parts of the body, so we will keep checking that everything grows the way it should" is enough.

School-age children can hold a simple frame. Some treatments can make it harder to have a baby later, and doctors check on that as you grow.

Teenagers deserve the real conversation, and they should get part of it alone. Many teens will not raise it in front of a parent. Ask the clinic to schedule private time. A survivorship visit is also the moment to ask who takes over these questions in adult care. It is also the time to get the treatment record into the teen's own hands.

For the wider picture, see Late Effects of Childhood Cancer Treatment and Childhood Cancer Late Effects: Questions for Follow-Up. For decisions before treatment starts, see Fertility and Cancer: Options Before Treatment and Fertility and Cancer Treatment. Related pages include Feeding and Appetite Changes in Childhood Cancer and Talking to Teachers About Childhood Cancer.

• Fertility Issues in Girls and Women with Cancer, National Cancer Institute
• Fertility Issues in Boys and Men with Cancer, National Cancer Institute
• Late Effects of Treatment for Childhood Cancer (PDQ), National Cancer Institute
• A Conversation on Oncofertility, National Cancer Institute
• About Infertility and Fertility, NICHD