Preserving Fertility in Children and Teens with Cancer

For LGBTQ+ youth

If your child or teenager identifies as lesbian or gay, and/or is a transgender or gender non-conforming person, please talk to their cancer care team about any needs that are not addressed here. 

Studies show that many doctors and nurses don't know the right questions to ask. 

Let the cancer care team know your child’s sexual orientation and gender identity, including what sex they were at birth, how they describe themselves now, organs they were born with and any gender affirming treatment they have received. Giving providers this information will help your child get the personalized care they need.

Causes of fertility problems in children and teens

The following types of cancer treatment may have long-term effects on fertility for children and teens.

Chemotherapy

A certain type of chemo medicines called alkylating agents are more likely to affect fertility than other types of chemotherapy. Some examples of alkylating agents include:

• Cyclophosphamide
• Ifosfamide
• Procarbazine
• Busulfan
• Melphalan

In general, high doses of alkylating agents are most likely to cause infertility. Doctors try to use the lowest possible doses for children. This lowers the risk of permanent damage to reproductive organs. Also, many pediatric cancers are not treated with alkylating agents. Ask the cancer care team about possible fertility risks with any anti-cancer medicines prescribed for your child.

Radiation therapy

Radiation therapy can damage the ovaries or testes. The risk is highest when radiation is focused on the pelvis, abdomen (belly), spine (back bone), or the whole body.

Girls: Radiation therapy that affects the ovaries can damage the eggs and decrease hormone production. Girls who have not yet started their periods (menstruation) may experience delayed puberty. Girls who have started their periods might have irregular periods, or their periods may stop during treatment.

Radiation therapy can also scar the uterus. This might prevent the uterus from enlarging enough during a pregnancy, increasing the risk of miscarriage and premature or low-birth-weight babies.

Boys: Radiation therapy might damage sperm and affect hormone production. For boys who have not gone through puberty, this might delay or prevent normal puberty. Damage to the testicles can cause temporary or permanent infertility.

All children: Radiation therapy to the brain may also cause fertility side effects. Radiation treatment might damage the brain’s signals to and from the reproductive organs. If reproductive organs are not damaged, hormone treatment helps fix this problem.

Surgery

If cancer is found in your child's reproductive organs, the cancer care team might suggest surgery to remove part or all of these organs. These surgeries can affect fertility.

Fertility preservation

Not all children who get treated for cancer will need fertility preservation. Some cancer treatments don’t affect fertility at all, such as surgery for cancers in the legs or chest. But some types of cancer treatment are more likely to cause fertility issues as a child or teen gets older.

Some children and teens lose their fertility for only a short time. For others, cancer treatment can cause complete and irreversible infertility. There may be ways to preserve your child’s fertility or to reduce their risk of infertility after treatment. The cancer care team or a fertility specialist can help you understand your child’s options.

Fertility options for girls

Girls are normally born with all the eggs they need for their entire life. But those eggs don’t mature until they go through puberty. Because of this, a girl’s fertility options will depend on whether she’s reached puberty.

Before puberty

Many girls treated for cancer before they’ve reached puberty are not at high risk for infertility. These girls won’t need fertility preservation. They will most often go through puberty and start having periods at a typical age.  

But some girls will get treatments that can damage the ovaries and other organs needed to conceive and carry a baby to full term. If a girl’s risk of fertility problems is high, ovarian tissue cryopreservation might be an option.

Ovarian tissue cryopreservation

This method of fertility preservation is the most effective for girls who haven’t gone through puberty yet. It involves taking out and freezing some ovarian tissue.

Before she begins cancer treatment, any girl who has not yet gone through puberty should be assessed to see if she is at high risk for future fertility issues. If the risk is high enough, tissue is taken from her ovaries during an outpatient surgical procedure. It is then frozen and stored for the future.

After cancer treatment is finished, the ovarian tissue can be placed back into the girl’s pelvis. Current studies show that the ovarian tissue regains normal function 9 out to 10 times. This provides the girl with female hormones so she can go through puberty. It also increases the chances of pregnancy in the future.

Not all girls getting cancer treatment need to get their ovarian tissue frozen. This procedure is mostly done if the girl is getting:

• Radiation to her abdomen (belly) or pelvis
• High doses of certain chemotherapies
• Stem cell transplants (because of the treatments given to prepare for the transplant)

Other options

Research is also being done to find other options for fertility preservation in girls who haven’t gone through puberty. If you would like to know more, ask a fertility doctor if there are any clinical trials that could provide other options.

After puberty

Most girls begin puberty somewhere between ages 8 and 13. After puberty, the eggs in a girl’s ovaries begin to mature.

Cryopreservation (freezing mature eggs or embryos)

Once a girl develops mature eggs, she has more fertility preservation options. This includes freezing eggs or freezing fertilized embryos (woman’s eggs combined with a man’s sperm).  

Freezing eggs: For this procedure, mature eggs are removed from the ovaries and frozen. This might also be called egg banking. When the girl is older and ready to try to become pregnant, the eggs can be thawed. The thawed eggs are then fertilized by a partner's or donor's sperm and implanted in her uterus.

Freezing embryos: In this procedure, mature eggs are taken from a girl or young woman’s ovaries and then fertilized with sperm. If she is older and has a male partner, his sperm may be used. The other option is donor sperm.  Once the embryos have been frozen, they can be thawed and implanted in her uterus to try to achieve pregnancy.

You can find more information about cryopreservation in Preserving Fertility in Women with Cancer.

Ovarian tissue freezing

This may be an option for girls after puberty if there isn’t enough time to harvest eggs or create embryos before cancer treatment starts. (See the previous section: Options for Girls Before Puberty.)

Ovary transposition

Radiation therapy to, or near, the abdomen (belly) or pelvis can damage a girl’s ovaries and uterus.

Ovarian transposition may be an option in situations like this. During ovarian transposition, the ovaries are surgically moved out of the radiation area.

It’s usually best to do this just before starting radiation therapy, since the ovaries tend to fall back into their normal position over time. If the ovaries have not gone back to their normal position after radiation treatment, they may have to be moved back during a second surgery in order for a woman to get pregnant.

The procedure is successful about half of the time. Because of radiation scatter, ovaries are not always protected.

Monitoring for fertility and early menopause

Many girls treated for cancer after puberty will have their periods return. They may be fertile as young adults, but they could go through early menopause. It’s also important for your child to know that even if she has normal periods, she might still need to see a fertility specialist because of hormone problems.

All girls who get cancer treatment before they go through puberty will likely need to have their hormone levels checked at times in the future.

Even after going through puberty, there is still a risk of fertility issues and early menopause. Some girls who are fertile in young adulthood may go through early menopause before they are ready to start a family.

Even the best hormone tests can’t always predict what will happen in the future. It’s best to see a specialist early in your child’s reproductive years, soon after puberty. If she develops mature eggs, she may choose to freeze them in her late teens or early twenties to preserve her fertility in case treatment causes early menopause.

Fertility options for boys

Boys don’t make sperm until they go through puberty. Because of this, a boy’s fertility options will depend on whether he’s reached puberty.

Before puberty

At this time, there is no proven way to preserve fertility in boys who have not gone through puberty. Before puberty, boys don’t yet make sperm, so there is no sperm to freeze and bank (cryopreserve).

However, some fertility centers are studying testicular tissue extraction (TTE). In this procedure, testicular tissue is removed from a boy before cancer treatment begins. The tissue is then frozen until it can be transplanted back into the boy’s body.

Removal of the testicular tissue is most often done when a boy is in the operating room for another procedure, such as a bone marrow biopsy or placement of a vascular access device.  After cancer treatment is finished, the testicular tissue is put back into the boy’s body.

By replacing the testicular tissue, the aim is to replace sperm stem cells that might otherwise been damaged by cancer treatment.  Those sperm stem cells would then make mature sperm. Studies continue to look at whether putting the testicular tissue back into the boy’s body is safe and effective.

Ask your cancer care team how likely your son is to become infertile from cancer treatment and if testicular tissue extraction might be an option.

After puberty

After a boy goes through puberty, his body starts to make mature sperm. This means sperm banking for fertility preservation is an option. Healthy sperm can be frozen and stored for long periods of time.

Boys usually make enough sperm for sperm banking by about the age of 12. Testing can be done to look at the size of the testicles to see if they have reached the size needed to make enough sperm for banking.

Sperm for banking is most often collected through masturbation. Some young teens may not feel comfortable masturbating to produce a semen sample. Having to talk about it with their parents or not having masturbated before can increase the discomfort.

Some teens may find it easier to use a vibrator in the collection room. Infertility clinics often have medical grade vibrators, making collection more of a medical procedure. This may be less distressing for some teens.

You can learn more about sperm collection methods in Preserving Fertility in Men with Cancer.

Monitoring hormone levels after cancer treatment

Some cancer treatments can also affect how much testosterone is made. This hormone is needed  to develop an adult male body.

Many boys’ and teens’ bodies will make enough testosterone after cancer treatment for normal puberty and overall growth and development. But some might not make enough testosterone if their testicles are damaged by treatment.

Your child’s hormone levels can be checked by a blood test, especially if they have delayed puberty. Most boys who don’t go through a normal puberty can take replacement hormones. But talk to your child’s cancer care team to see if there are any reasons he should not get the hormones.

Fertility options for transgender and gender non-conforming youth

For children and teens who are transgender and gender non-conforming, fertility preservation options are based on the reproductive organs they were born with. Their options will also depend on whether they’ve started gender affirming hormones or other procedures.

Your cancer care team or fertility specialist can help you understand how these hormones or procedures might affect your child’s fertility options.

Costs of fertility preservation

The cost of fertility preservation varies depending on the type of procedure and where it is done. Costs include:

• Procedure to collect the embryos, eggs, sperm, or ovarian or testicular tissue
• Process for freezing the tissues collected
• Storage of frozen tissues (often a yearly fee)

Costs for girls

Ask about the costs for the procedure to collect eggs or ovarian tissue. It may cost $10,000 or more. There will also be additional fees to store these tissues, so ask about those as well.

If your child has frozen eggs, embryos, or ovarian tissue, it’s important to stay in contact with the storage facility to be sure that any yearly storage fees are paid and your contact information is correct.

Costs for boys

Ask about costs for initial sperm collection and banking, and for ongoing storage. Sperm testing and banking costs about $500-$1,000. The average cost for storing sperm is about $200-$500 per year. Costs can vary greatly between sperm banks.

The average cost of testicular tissue freezing in boys before puberty varies from one center to another. Be sure to ask about the cost of extraction, freezing and storage. Also ask whether this procedure can be done as part of a clinical trial. In that case, some or all of the cost may be covered.

Insurance coverage and financial assistance

Ask your insurance provider whether your plan covers the cost of the procedure and storage fees. In the past, insurance did not typically cover these costs. But some states have now passed laws requiring insurers to pay for fertility preservation for people whose fertility is at risk from treatment.  Be sure to ask your insurance if they have a preferred provider or location for your child to go to.

If your insurance doesn’t cover the costs, the storage facility may offer financing and payment plans for people with cancer. Also, there are some groups, such as Livestrong, that offer help in finding fertility preservation services at a reduced cost.

Oncofertility programs

Many children’s cancer centers have oncofertility programs. These programs focus on preserving fertility and increasing the chance a child or teenager will be able to have children in the future. They include fertility experts who can help you and your child decide the best approach.

If the center where your child is treated doesn’t  have an oncofertility program, ask the cancer care team to refer you to one in your area.

Talking about fertility with children and teens who have cancer

Fertility is a complex idea, especially for children and teens. Depending on their age and maturity, their understanding of fertility can vary greatly. When asked, many children and teens will express their desire to have children in the future. This can be important to quality of life, and it needs to be addressed.

It’s important for the cancer care team to talk with you and your child about any risks to your child’s fertility and any preservation options. These discussions are best done soon after diagnosis, before cancer treatment begins.

Consent and assent

As a parent or guardian, you will have to give consent (permission) for any fertility preservation approach that is used for your child. However, any child who can understand fertility and the procedure should be involved in making the decision.

Ask your child if they want the procedure to help preserve fertility. Children and teens cannot give full legal consent because they are less than 18 years of age. But a child who can understand must generally agree before a procedure. This is called assent.

Consent should only be given after learning the following about the procedure:

• Risks
• Possible complications
• Success and failure rates

How to start the conversation

Many children and teens know something about puberty and development. Asking your child what they know might help start a discussion. If your child can understand fertility, they should be involved in the discussion about how cancer treatment may affect their ability to have children. They should also be involved in discussions about fertility preservation. It helps to find age-appropriate ways to discuss the topic with your child. The cancer care team can help you with this.

Discussions about fertility can cause many emotions for both parents and their children. Feelings like anxiety, distress, and discomfort are normal. Here are some things to think about as you begin the conversation:

• Find time to talk about the options and risks. Be open to all questions and fears.
• Let your child know that many childhood cancer survivors go on to have a family later in life. For some, this may mean adoption or other assisted fertility methods.
• Be honest about risks and possible benefits of fertility preservation. Be hopeful, but let your child know that fertility preservation isn’t a sure thing. 
• Ask the cancer care team for a referral to counseling. They might be able to help make these conversations less overwhelming.