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.
I had cancer when I was a young teen. The only effect it had on my dating was that it made me value thoughtful, caring people. Not a bad thing! I had normal relationships through college and am happily married now. My wife and I have three beautiful, healthy kids.
Some young adults rush into relationships while they are feeling vulnerable and uncertain of who they are or what they want.
I was very dependent on my family after my diagnosis of Wilms tumor at age 18. I married right out of college and was totally dependent on my husband. He handled all the money, made all the decisions, and pretty much ran my life.
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When I had cancer at age 15, over 30 years ago, my parents didn’t know if I would survive. As a result, I had no rules or guidance through my teen years. I went quickly into a bad marriage and then divorced. Several years later I married my wonderful husband who has been the best thing that ever happened in my life.
Others feel that having cancer gave them a maturity that helped them find a partner who shares their values.
Hanging around adults for several years during treatment matured me beyond my years. After cancer, I was serious about big decisions. I still knew how to have fun, but I was more thoughtful, more discerning. I married a wonderful woman 20 years ago, and we have three beautiful kids. I’d be having a different life if not for cancer.
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My husband has been with me through a lot in the 22 years since I had cancer. I have several late effects that have changed our lives. But I believe in following your dreams. We just took a different attitude and we enjoy what we can do together. The things I can’t do with him, I just adapt. My heart is in the mountains. We have taken many hikes through the years. When my husband decided to climb Mt. Whitney, I wanted to go. It was the ultimate hike, but due to my chronic fatigue, I had to miss out. I trained with him on the local hills. When he climbed Mt. Whitney, a little bit of me went along. I accept the restrictions in my life and enjoy very much what I can do. We both have wonderful senses of humor and that has helped us through the years.
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.
I am lucky to not have many late effects from my bone marrow transplant. Many of my peers whom I grew up with at the hospital have serious side effects. I have been truly blessed that I lead a very healthy life. I do have a couple of side effects that might play a larger role in my life as I get older, but as of right now they are pretty insignificant. I have cataracts in both eyes, and a mild heart problem caused by one of the drugs I received taking chemotherapy. The other side effect is due to damage to my endocrine system. I don’t think I will be able to have my own children, and as I get older, I am finding that difficult to deal with, as I absolutely love kids. But there are always options. If medical advancements do not provide me a way to have my own children when I am ready to have them, then I would definitely adopt.
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When the doctors told me that I probably was infertile, it was the most devastating part of the whole experience. By the time they told me about sperm banking it was too late. My urologist looked at the results and said, “No way, buddy.” When I was dating, I told my future wife that I was told I’d be infertile. But in the back of my mind, I always had hope. My wife stayed on the pill until we thought we were ready to be parents. The first month she went off, she got pregnant. We have an 18-month-old boy, and my wife is pregnant again. It’s wonderful. He’s a miracle.
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.
I had Hodgkin’s 15 years ago and again 2 years ago. I used a sperm bank because my wife and I really want children. It’s funny how the pain is so temporary, but loss stays. Even the memory of pain is gone, but losing an ability is forever. The hardest thing is loss. And the worst loss is infertility. We are running out of vials and none of the inseminations have worked. For me, this is the hardest part of having cancer.
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 .
I had ABVD (combination of four chemotherapy drugs) to treat my Hodgkin’s. I’m glad because we really want children, and MOPP has an increased rate of fertility problems. I don’t think I’ll have any fertility problems. We’ve done all the tests and I seem to be fine. During treatment, of course, my periods stopped. But I have them now like clockwork.
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.
I was told when I was about 15 years old that the retinoblastoma I had as a child was possibly genetic. No one could say for sure. That was a blow at that age, because even then, I was babysitting a lot and imagined having my own little ones someday. I had several years to let this news sink in before I met the man I married. He was aware of my medical history, and it was okay with him if we adopted. Although on the surface, all seemed to be settled, the decision became very real and not so logical when the time came to decide on some permanent form of birth control. It made no sense for him to have a vasectomy, since he was healthy. What if I died young or we divorced? He should still be able to father his own children. So logic and common sense said I should have a tubal ligation. This was in 1970, and although my head said this was right, my heart and emotions made it difficult. What if a cure was found while I was still of childbearing age?
Logic won out when I considered how sad I would feel if my children developed retinoblastoma in both eyes. The agonizing over my decision was also not something I would want my children to go through. It just made more sense to stop the spread of this disease. My older sister, who did not have RB, was unable to have children due to a medical problem that was unrelated. Once we knew more about the heredity factor, she admitted relief that she had adopted, because she was afraid that perhaps she carried the gene, too.
This is not an easy decision to make, and no one can make it but the survivor. If I had my own children, they would be at an age to parent also, and I am glad I don’t have to watch them make that decision. My adopted daughter had a baby boy 2 years ago, and it was a relief to know neither she nor I had to worry about little Devin.
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.
I was diagnosed with non-Hodgkin’s lymphoma stage IV when I was 16. It had already metastasized to my lungs, bones, and spine. The tumor in my spine paralyzed me from the waist down and I had lots of radiation to my lumbar spine to help me regain my mobility. The doctors told my mother that my ovaries probably got so much radiation that I would never have children. Well, I didn’t believe them so I started using birth control pills when I was 18. Even using birth control pills I got pregnant—with twins. Since then I’ve had three more children.
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I had ALL 25 years ago. My wife and I have had no problems conceiving. As a matter of fact, we have three children, each 19 months apart. We’re very fertile. I had a vasectomy because three was all we wanted.
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.
About the issues of fertility—life and living is better. In 1972 at the age of 21, because of treatment, I lost my capacity to have children. I thought I would never recover, but life is funny and I did. I found myself working with children in all sorts of ways that I had never imagined. And I can say that although at times it has been hard, my life has been incredibly rich even without children.
I have found in strange ways children do come to you. I was a children’s librarian, I love my nieces and nephews, and I enjoy the children of my friends. But I did have to go through a lot of therapy before I properly grieved my infertility.
In terms of dating and finding men—I found that my infertility was a funny way of weeding out the chaff from the keepers. The good and wonderful men in my life have never found my infertility a problem, including my wonderful and loving husband. Not having children is something we have mourned together. We have a rich life nevertheless.
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I was told when I was treated for Hodgkin’s in 1977 that I would be sterile. It was hard because I’d always wanted twin girls. The whole bubble burst—your health and looks go, and you can never have children. It was like every door started slamming closed one at a time. I thought I’d adopt. When I was in my early 20s, my husband and I went to three preliminary meetings. Then a friend asked what was our hurry, and that made sense so we decided to wait. After that we realized we liked our freedom. I also had problems with my immune system so I’ve been sick a lot, plus I have chronic fatigue, so it would have been really hard to have kids. I couldn’t have children, but I’ve always loved cats. I filled the void of being childless by raising a cat. Whiskers was with me for nearly 20 years. She was my constant companion and my strength throughout my illnesses. I have no regrets. I have loved my life.
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Sadness, like anger, is one of those emotions in life that has its appropriate place. We can’t protect ourselves from sadness, nor should we want to. Sadness that sweeps over us from time to time allows us to savor our joys and thrills.
I think that surviving a life-threatening illness sometimes makes us a little more susceptible to sadness because it places us on a life journey where we will be altered in ways that may not suit us. From time to time, even though it is 28 years later, I am caught up in a tremendous sadness at not having children. It is a deep and abiding grief that washes over me at odd and unexpected moments. But it does wash over me and then pass. And I am able to go on and savor the joys of my life.
Support and empathy from family and friends may not occur if you are infertile. Leslie Schover, in Sexuality and Fertility After Cancer , writes:
The most profound loss is giving up the dream of having one’s own, genetic child. Cancer survivors are often told by physicians, family, and well-meaning friends that they should be glad to be alive. Their pain at being infertile is dismissed as ingratitude. But many people see having a child as a very concrete way of defeating death and leaving a part of oneself for the future. Many men and women grow up assuming they will be parents one day. For a couple, that longed-for child was to be the blending of their individual strengths and the product of their love. Mental health professionals who treat infertile couples often point out that it is difficult for them to grieve adequately or to get true understanding and support from family and friends because what has been lost is potential, rather than an actual child. The loss is no less real, however.
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.
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.
Because I had bilateral retinoblastoma, I have a high chance of passing it on to any offspring. A doctor told my mother when I was in my early 20s that the disease could be passed on, so my wife and I chose not to have any kids.
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
I had leukemia 20 years ago. I have three beautiful children. All healthy, all smart. What a blessing.
Many evenings I go into the bedroom of my 18-month-old son to just look at him. He is so perfect, such a miracle. I hope that I will always be able to protect him from harm.
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.
I had Wilms tumor when I was 2 years old. I have had three sons and all were around 7 pounds and full term. I do have one badly damaged fallopian tube from the radiation, but it didn’t seem to affect my fertility. The only problem I’ve had is that the slight scoliosis (curvature of the spine) from the radiation makes epidurals during labor difficult.
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When I was treated for Wilms tumor with flank radiation and chemotherapy as a teenager, I stopped having periods. When I was finished, I had a complete endocrinology workup and was told my chances for having children were between slim and none. They told me if I ever wanted children they could try some fertility drugs. Since I was planning on getting married, I asked about birth control and was told none was necessary. So I got married and within a month started a new job doing public relations for a regional hospital, which required mandatory blood testing. The very first day on the job they called me to make sure I knew that the pregnancy test was positive! I was shocked, but absolutely thrilled because all my life I’d wanted children, and yet I had so much fear that I never would. I had my first healthy son when I was 22 and my next healthy son 4 years later.
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.
I had retinoblastoma in one eye 30 years ago. They thought it was the non-hereditary form because it was one tumor in just one eye. The eye was removed, and I had no chemotherapy or radiation.
Ten years ago, my newborn daughter was diagnosed with retinoblastoma in both eyes. She had one eye removed and the remaining eye was radiated with 2200 cGy (centigray). Two years later the tumors returned in her remaining eye. The tumors regrew only 3 weeks after chemotherapy ended, so she had more chemotherapy. When that course had to be cut short due to side effects, they decided to remove the remaining eye.
I was 6 months pregnant when my daughter’s retinoblastoma returned. The doctors knew that there was a chance that the child I was carrying could inherit the disease, since both my daughter and I had it. After my son was born, he was checked over carefully, and the cord blood was sent away for DNA testing. The results came back and showed that he had not inherited the disease. He’s fine, but still goes every year for a checkup.
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 .
I had non-Hodgkin’s lymphoma when I was 16. When I was 21 my third child Danielle was born. On her first birthday, she was diagnosed with neuroblastoma. The doctor, who had treated me, had big tears in his eyes when he told us. Two years later, she died. We’ve had a lot of cancer in my family, and I’ve since been treated for breast cancer (at age 27) so we just may have cancer genes running in the family.
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 .
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.
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)