Marriage (or a lifetime commitment) is one of life’s major events. But for survivors of childhood cancer, making a life-long commitment may take on even greater meaning. A lingering fear of recurrence makes some survivors hesitant to link their future to another. Coming to terms with uncertainty, however, allows you to acknowledge you have a future that includes love and companionship.

Some young adults rush into relationships while they are feeling vulnerable and uncertain of who they are or what they want.

Others feel that having cancer gave them a maturity that helped them find a partner who shares their values.

Fertility

A big concern of some childhood cancer survivors is whether they will be able to have healthy children. Evidence indicates that cancer survivors are not at greater risk of having children with disabilities or cancer when compared with those who never had cancer (see the Health of offspring section later in this chapter). The vast majority of survivors remain fertile, and many have one or more healthy children. In some cases, however, the treatment used to save lives takes away the ability to create new life. This is an especially poignant and difficult loss.

Those most likely to be infertile or have impaired fertility are:

• Survivors who had high doses of alkylators—cyclophosphamide, carmustine (BCNU), lomustine (CCNU), busulfan, melphalan, ifosfamide—and/or total body radiation.

• Male children and teens who had direct radiation to their testes.

• Female children and teens who had direct radiation to their ovaries.

Children treated before puberty tend to have fewer fertility problems than those treated after puberty, and girls usually are less affected by treatment than boys. For more information about the effects of radiation and chemotherapy on fertility, see Chapter 9 .

In addition to the treatments listed above, many other factors affect the nature and degree of fertility. These include the type of cancer, its location, the treatment, gender of the survivor, and age at diagnosis. Physical and psychological late effects also impact the desire and ability to have children.

Fertility is affected if female survivors have an early menopause. Normally, fertility tends to decrease when women are in their mid-30s. In some women treated for cancer, this decrease in fertility can occur much earlier. Those most at risk for early menopause are:

• Adolescent girls treated after puberty.

• Female children or teens treated with both cyclophosphamide or other ovarian toxic drugs (ifosfamide, BCNU, or the combinations of medicines called MOPP and COPP) and radiation below the diaphragm.

• Girls who had an early puberty due to cranial radiation.

If you are at risk for early menopause, talk with your healthcare provider about family planning. You may be fertile for fewer years because of your treatments. If your periods become irregular or stop completely, see your gynecologist. Fertility can decline even with regular periods, so survivors at risk of early menopause should not rely on their periods as evidence of fertility—they need to have hormone levels monitored by their healthcare provider. Survivors who experience early menopause should get routine medical care to check for osteoporosis (thinning bones) and heart disease. These medical issues are covered in Chapter 9 and psychological issues are discussed in Chapter 2 .

There may be factors other than physical problems that affect childbearing. Some women worry that pregnancy may be risky because of their treatment for cancer—a true medical concern for those who had certain treatments, such as pelvic radiation. Others fear they may pass on cancer to their children, a fear that is, in most cases, unfounded. Yet other survivors are concerned about relapse or secondary cancers and may hesitate to bring a child into the world whom they might not be able to parent into adulthood.

Some survivors who are told they are infertile from their treatments are surprised to find out that they or their partners are unexpectedly pregnant. Even if it is likely that you are infertile from treatment, it is best to use birth control if you do not desire children.

Some adult survivors were never told or do not recall hearing that infertility was a potential consequence of treatment for their cancer. Prior to the early 1970s, many parents were advised not to discuss the cancer with their children. Young children knew they were sick, and when treatment was complete, the family acted as if the cancer had never invaded their lives. Many young adults do not learn that their ability to have children may have been compromised or destroyed until they have spent several emotional and expensive years trying. Learning the truth can unleash overwhelming feelings of anger and devastation. Survivors who were told of their probable infertility have varying feelings, and these may shift over time. Counseling from an expert in grief and loss can be of immense help to those struggling with these strong feelings.

Support and empathy from family and friends may not occur if you are infertile. Leslie Schover, in Sexuality and Fertility After Cancer , writes:

In order to make informed decisions about childbearing, you need to ask questions and get thorough, understandable answers. Start off by asking yourself the following questions, and then consult a medical professional at a comprehensive follow-up clinic to get an honest evaluation of your individual situation.

• Am I in a stable relationship and do we both want children? Not having children is a choice made by many couples, with or without a cancer history.

• Am I experiencing any anxiety about the health of my future children? The next section discusses health of offspring, and for the vast majority of survivors, the news is very encouraging.

• Am I worried about my ability to physically carry a child? Pregnancy places additional stresses on the heart and lungs. If you received anthracycline drugs (doxorubicin, daunorubicin, idarubicin, or mitoxantrone) or lung, heart, or uterine radiation, you may have a higher risk for pregnancy complications. Prior to pregnancy, obtain expert advice about your actual risks so you can make an informed decision. If you do have any increased risk, get obstetrical care from a specialist in high-risk pregnancies during your pregnancy.

• If I wait to try to get pregnant, will I have problems conceiving? Much is known about risks to fertility from various treatments. Opinions from your caregivers will be about risks to groups of survivors, not you as an individual. Fertility is a complicated matter, and your healthcare provider will consider your type of cancer, age at diagnosis, your gender, and your treatment. Keep in mind that you are getting an educated opinion (or two), but not having your future told. The honest answer is that knowledgeable healthcare providers can give you their best guess, but no one can accurately predict your future.

• If I am infertile, what technologies are available to help me become pregnant? Donor sperm, donor eggs, in vitro fertilization, and surrogate mothers are methods of reproduction for infertile survivors. To find out about the most up-to-date techniques available, contact Fertile Hope at www.fertilehope.org or RESOLVE at www.resolve.org .

• What are the costs of the various options—adoption, infertility treatments—and how will they be financed?

• Would we rather adopt a baby, go through infertility treatments, or choose not to have children? Spend time talking over your priorities before making these important decisions. Consulting a mental health professional with experience helping couples cope with infertility may help you clarify your feelings and sort out your options. Infertility clinics in your area or your oncologist can provide the names of skilled therapists.

Explore whether there are local support groups for infertile couples in your area. Sharing experiences and talking over your situation with others can yield understanding and empathy you may not get from family or friends.

Health of offspring

Cancer survivors often worry about the health of their future children. They are afraid that a child conceived after surgery, radiation, or chemotherapy might be born with serious or life-threatening health problems. They also sometimes wonder if they could pass on their cancer genetically to their children.

The results of studies looking at the rate of birth defects in children born to childhood cancer survivors are very encouraging. In general, children born to survivors are just as healthy as those born to people who never had cancer. Doctors caring for survivors encourage them to have children if they desire them, and except in certain circumstances, no special tests are recommended. However, close monitoring is necessary for certain risk groups, such as those who had pelvic radiation or received drugs that can damage the heart.

An article published in the New England Journal of Medicine in 1998 described the results of the largest study done to date on the health of the children of survivors of childhood cancer. Researchers in Denmark, Finland, Iceland, Norway, and Sweden examined their national databases to assess the risk of cancer in offspring of 14,652 cancer survivors who had produced 5,847 offspring. Other than survivors of retinoblastoma and other hereditary cancer syndromes (e.g., Li-Fraumeni syndrome, von Hippel-Lindau disease), offspring of cancer survivors were just as healthy as the children of their healthy siblings. ¹ More recently, a study of 4,699 children of 1,128 male and 1,627 female childhood cancer survivors provided strong evidence that the children of cancer survivors are not at significantly increased risk for congenital abnormalities resulting from their parents’ cancer treatments. ²

This encouraging news concerns survivors treated in the 1970s and 1980s. Results about the effects of newer protocols will unfold over the next 2 decades, as those survivors reach adulthood, marry or enter committed relationships, and have children.

Physical changes in the bodies of some female Wilms tumor survivors can cause health problems in offspring. Women who had abdominal or pelvic radiation may have a uterus that does not expand well during pregnancy. This can cause spontaneous abortion (miscarriage), low-birthweight infants, and a higher rate of babies who die in the uterus or soon after birth. Any pregnant survivor with a history of radiation that included the uterus should be followed by an expert in high-risk pregnancies.

Pregnancy is a stress on the heart, so if you were treated with drugs that can weaken the heart (see Chapter 12 ), you should have your heart evaluated prior to pregnancy and be cared for by a specialist who can monitor your heart during pregnancy and labor.

Very few types of cancer can be passed from parent to child genetically. Familial retinoblastoma, Li-Fraumeni syndrome (clusters of different cancers such as breast cancer, leukemia, brain tumors, and sarcomas in a family), and rare cases of Wilms tumor may be caused by genetic mutations.

If you are one of the survivors whose family history puts you at higher risk for having a child with health problems, you might want to consider genetic counseling and possibly genetic testing. Prior to the testing, take steps to protect the confidentiality of the information. One way to do this is to learn about the Genetic Information Nondiscrimination Act (GINA), a federal law passed in 2008 to limit disclosure of genetic information without your permission. Consumer factsheets about GINA are available at www.ginahelp.org and www.genome.gov/10002328 .

State-of-the-art genetic counseling is a multi-step process, with several sessions and chances to change your mind about testing. It also includes follow-up to thoroughly explain the report and what it means. A good genetic counselor can help explain the nature of the risks (if any) your genetic profile could cause an unborn child. Your test results and counseling sessions should be confidential. Genetic testing is a rapidly evolving field. To learn more about genetic testing for cancer, you can view the National Cancer Institute slide program, “Gene Testing” at http://cancer.gov/cancertopics/understandingcancer/genetesting . Make sure you go to a well-respected genetic counseling program. You can get a referral from your doctor, your nurse practitioner, or the National Society of Genetic Counselors (go to www.nsgc.org and click on “Find a Genetic Counselor”). Various resources related to genetics are available at www.geneticalliance.org .

Adoption

Whether to adopt children is an intensely personal decision. If you wish to adopt an infant, you may find that it is a difficult and time-consuming process. If you are open to adopting a toddler or older child, or a child of mixed race background, the waiting time is almost always shorter. Many of these older children are healthy and well adjusted, although others have medical needs, disabilities, or emotional issues. When applying to adopt, you may face barriers from agencies based on your health history. Nevertheless, many adoptive parents describe the process as worth every second once they fold their new infant or child into their family.

Domestic or international adoptions can be arranged through public or private licensed adoption agencies. Title III of the Americans with Disabilities Act prohibits agencies from discriminating against cancer survivors based solely on their cancer history. They must consider applicants on an individual basis. You can also arrange adoptions privately through an attorney.

During the adoption process, a home study is done by the agency involved. This study will require a medical exam by the prospective parents’ physicians. Make sure your doctor explains your medical history in an honest yet positive way and stresses the length of time you have been off treatment and your current health status.

Choose your agency or attorney carefully to ensure that your emotional and medical situation is clearly understood. Try to put together a team that works well together to give you the best chance to adopt.