2005 © Oxford University Press
Motivation for Parenthood After Cancer: A Review
Correspondence to: Leslie R. Schover, PhD, Department of Behavioral Science–Unit 1330, University of Texas M.D. Anderson Cancer Center, P.O. Box 301439, Houston, TX 77030–1439 (e-mail: lschover{at}mdanderson.org).
 |
ABSTRACT |
|---|
 Top Abstract IntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
Research on the psychosocial aspects of parenthood after cancer is just beginning. Because of delayed childbearing and increasing success of cancer treatment, more young adults are experiencing infertility related to their past cancer treatment. Pilot surveys of 132 young men and women in one sample and 201 men in a second indicate that for a majority of cancer survivors, their illness increases the value they place on family ties. Nevertheless, 17% of women had unrealistically high anxiety about pregnancy causing cancer recurrence, and even greater percentages of survivors feared that their children would be at high risk for birth defects or cancer. More research is needed with large and diverse samples of cancer survivors to create educational and supportive interventions for those interested in becoming parents after cancer.
|
INTRODUCTION |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
The demographics of cancer survivorship and delayed childbearing ensure that increasing numbers of patients will have their family building disrupted by cancer treatment. The gradual successes of cancer treatment, particularly for malignancies that affect young people, such as pediatric leukemia, testicular cancer, and Hodgkin Disease, also have yielded a large population of cancer survivors who may still wish to have children. According to the National Health Information Survey of 2001 (1), 2.2% of adults aged 18–44 years in the United States have been diagnosed with cancer. Using statistics for this age group from the United States 2000 Census (2), approximately 2.5 million adults of childbearing age are cancer survivors. Not all cancer treatments impair fertility, but a majority of these men and women were probably treated with gonadotoxic chemotherapy, with smaller numbers having had surgery or radiation therapy affecting the reproductive system.
At the same time, childbearing has become increasingly delayed in American families. Birth rates for women in their thirties have been climbing steadily, reaching a high in 2001 of 95.6 per 1000 women aged 30–34 years and 41.4 per 1000 women aged 35–39 years (3). Births to women aged 40–44 years have more than doubled since 1981, to 8.1 per 1000 women. According to the United States Census report for 2000, the percentage of women who remain childless has jumped from 19.8% in 1980 to 28.1% in 2000 for women aged 30–34 years and from 12.1% in 1980 to 20.1% in 2000 for women aged 35–39 years (4). When these women seek medical care in preparation for conceiving, some will receive the unwelcome news of a malignancy. Data on paternal age are not readily available, but in 1995 in the United States, men at marriage were on the average 2.7 years older than their brides (5), so men, too, would be more at risk of having cancer diagnosed when they had not yet completed their families.
Infertility related to cancer treatment is not the only barrier to parenthood after cancer. Some young survivors may be burdened by medical bills, be denied affordable medical or life insurance, or have difficulty attracting a partner because of their medical liabilities. Cancer treatment may also interrupt career development, further decreasing financial resources. Young survivors face a heightened risk of second malignancies and other late effects of cancer treatment, and they may not have optimal levels of energy and vitality (6).
|
MOTIVATION TO HAVE CHILDREN AFTER CANCER |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
How does the experience of cancer affect survivors' desire to have children? Do the continuing stress and uncertainty about the future, even after apparently successful cancer treatment, discourage many from becoming parents? Perhaps infertility seems less salient and distressing in the face of a life-threatening illness. Only a few surveys have addressed these issues, and most focus on women. Contrary to such expectations, for younger women the loss of fertility may be almost as painful as the confrontation with cancer itself (7,8). Qualitative studies with younger survivors of breast cancer reveal several themes: women want to achieve their goal of parenthood, to feel normal again, and to rejoin the healthy world of motherhood. Women also worry about the health of their children, the potential for pregnancy to cause a cancer recurrence, and living to see their children grow up. Women wish to meet similar peers who have experienced pregnancy after breast cancer (8–11). Although infertility is often seen as a "women's issue," a retrospective survey of 153 testicular cancer survivors indicated that distress about infertility is also prevalent among men, particularly among those who are childless and who have cancer treatments that are likely to severely impair fertility (12). A small, qualitative study of men with diverse cancer sites confirmed that infertility can cause long-term distress (13).
Our own research over the last several years includes two surveys demonstrating that having children is a very important part of quality of life for younger cancer survivors (14,15). The first questionnaire was completed by men and women from the tumor registry of the Cleveland Clinic Foundation who were diagnosed before age 35 years, were currently at least age 14 years, and were free of disease at last follow-up (14). The second focused in detail on sperm banking and was only sent to men from the registries of the Cleveland Clinic Foundation and the University of Texas M. D. Anderson Cancer Center (15). Other eligibility criteria were identical to those for the first study, except that diagnosis could have occurred up to age 40 years. Table 1 compares the characteristics of the two samples.
|
In the first survey, no gender differences were found in the wish to have children after cancer or in attitudes about parenthood after cancer. Seventy-six percent of survivors who were childless at the time of the survey wanted children in the future, as did 31% of those who already had at least one child (14). Results in the second survey were almost identical: 76% of childless men wanted a child in the future, compared with 26% of men who had children (15). Having cancer decreased the wish to have a child in only 6% of childless survivors in the first survey and 13% in the second sample, compared to the cancer increasing the wish for a child in 19% and 24% of the samples, respectively.
Table 2 illustrates that for the great majority of both samples, the experience of cancer increased the value placed on parenthood and family ties, and that only a small minority of respondents perceived ill health as a barrier to becoming a parent. Biological parenthood was still an important goal for most survivors. A quarter to a third of respondents worried at least a moderate amount about their fertility, but adoption was considered an acceptable path to parenthood by over twice as many survivors as would contemplate having a child conceived with a donated gamete. This line of research is just beginning, and future surveys of survivors should include not only much larger samples but more diversity in terms of ethnicity and socioeconomic status.
|
|
ANXIETY ABOUT THE HEALTH OF OFFSPRING |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
Table 2 also demonstrates that cancer survivors are concerned about potential health problems for their children. In both surveys, less than half of respondents had discussed these issues with a health care provider (14,15). One concern is that a parent's past cancer treatment could lead to their having a child with a birth defect or genetic abnormality. No study has thus far documented an excess rate of birth defects in children born after one parent's cancer treatment (16,17). In the largest studies to date that examine pregnancy outcome after treatment for childhood cancer, 4029 pregnancies in female participants in the Childhood Cancer Survivor Study were documented (18), as well as 2323 pregnancies in partners of the males in the study (19). Women's past treatment with chemotherapy was not associated with adverse outcomes, but those who had previous pelvic irradiation were more likely to have low–birth weight infants. More voluntary pregnancy terminations were observed than anticipated, recalling our survey's findings that some women chose sterilization because of anxiety about the safety of pregnancy or the health of potential children (14). In the male cohort, the rate of live births (69%) was significantly lower than that for pregnancies conceived with brothers of the cancer survivors (19).
About a third of cancer survivors in our surveys believed their children would have unusually high risks of cancer themselves (14,15). Again, these fears may be exaggerated. A Scandinavian study used registry data to assess cancer risk in the offspring of people who had survived childhood malignancies. The only increased cancer rates were seen in a few families with known, autosomal-dominant pediatric cancer syndromes, such as retinoblastoma (20).
Most offspring born to childhood cancer survivors who have been followed thus far were conceived long after the parent's active treatment. More studies of survivors treated in adulthood are needed. Concern remains that using assisted reproductive technology to treat cancer-related infertility may allow conception to occur with genetically damaged gametes. It is noteworthy, however, that some types of chemotherapy can be administered to pregnant women in the second and third trimesters without causing fetal malformations (21), although subtle, cognitive im-pairments may perhaps remain undetected with current follow-up methods (22).
Although only a small percentage of young adults carry a known genetic mutation that increases lifetime cancer risk, the advent of genetic testing for inherited cancer syndromes creates a new set of dilemmas for those who want to become parents. For example, women with BRCA mutations increase their risk of breast cancer by having a pregnancy before age 40 years (23) but are often advised to have children early, followed by prophylactic oophorectomy when they are around 35 years old (24). Technologies such as prenatal diagnosis and preimplantation genetic diagnosis are also available to identify known autosomal dominant mutations responsible for hereditary cancer syndromes (25). Few couples have used these tests to avoid having a child at risk for inherited cancer, but with other genetic disorders, couples may prefer coping with the stress and low success rates of preimplantation genetic diagnosis to conceiving naturally and having to choose pregnancy termination if the fetus carries the undesirable genetic mutation (26).
|
PSYCHOSOCIAL ASPECTS OF CANCER DIAGNOSED DURING PREGNANCY |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
Cancer occurs during 1 in 1000 pregnancies (22). Relatively recently, many women were offered therapeutic abortions if they were diagnosed with cancer during a pregnancy, or they were discouraged from becoming pregnant after cancer treatment, even if they had a good prognosis. Abortion now is rarely suggested unless an ongoing pregnancy would interfere with life-saving cancer treatment (22). Even for breast cancer, diagnosis and treatment during a pregnancy does not appear to confer a survival disadvantage when women are matched on medical factors such as cancer stage and histology (27). An area much in need of study, however, is the psychosocial effect of experiencing cancer during pregnancy and the development of supportive interventions for such women when they have significant distress (28). In our first survey, 17% of women feared that becoming pregnant after cancer could promote a recurrence. One recent investigation found that reproductive concerns remain salient in women who have had gestational trophoblastic disease, and that 75% would have attended support groups if they had been available during treatment (29). An on-line support organization for women who experience cancer during pregnancy is also now available (30).
|
PSYCHOSOCIAL ASPECTS OF CHOOSINGNONBIOLOGICAL PARENTHOOD |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
Adoption and third-party reproduction are also paths to parenthood after cancer. Despite worries about the health of their future children, less than 10% of cancer survivors in either of our surveys (14,15) would choose to adopt or use donated gametes as a way to become parents while avoiding the potential health risks of a biological child. Parenting a nonbiological child is more accepted as an option when infertility prevents conception. Although men or women can become parents through adoption; use of donated sperm, oocytes, or embryos; or having a gestational carrier nurture an embryo, most of these choices are only affordable for the most affluent couples. Adoption of a child with special needs from a public agency is not expensive, but independent domestic or international adoption costs range from $8000 to over $30 000 (31). No survey data are available on whether a history of cancer is a barrier to adopting a child. However, anecdotal reports from an on-line discussion group on Yahoo.com, Adoption-after-Cancer (32), indicate that discrimination by agencies or birth mothers is fairly common. Many families do succeed in adopting a child, but most pursue international adoption.
Third-party reproduction does not necessitate the invasion of privacy of submitting to a home study and gives the couple a good deal of control over the genetic heritage of the child and its prenatal care. Yet adoption remains more acceptable than gamete donation to most cancer survivors (14,15). No psychosocial studies are available on families built by third-party reproduction after cancer, but studies of parents unselected for health who have used donor insemination should be relevant. Besides ignoring any lingering social stigma attached to assisted reproductive technologies, parents of children conceived with donor gametes must resolve the dilemma of whether or not to disclose the child's genetic history. Although mental health professionals and bioethicists believe that openness is best (33), most families do not disclose the use of donor insemination to children. Sweden mandated in 1985 that children born of donor insemination had the right to know the identity of their biological father, but a recent survey with an 80% response rate revealed that 89% of families who used donor insemination to have a child since the law was passed have not informed their children of the circumstances of their conception (34). The largest prospective follow-up of donor insemination children to date documents normal adjustment of children and families as the cohort reaches age 12 years, despite the decision of almost all parents to maintain secrecy with their offspring (35). When gamete donation is used because of a parent's cancer, however, telling the child may provide reassurance about his or her own lifetime cancer risk.
|
CONCLUSIONS |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
In summary, experiencing cancer as a child or young adult often strengthens the value survivors place on being parents. At the same time, survivors are often unrealistically anxious about the safety of pregnancy and the health risks to their potential offspring. Given that 2.5 million young adults in the United States have survived cancer, we need more research on the psychosocial aspects of parenthood, particularly on developing interventions to provide education and support.
|
REFERENCES |
|---|
|
TopAbstractIntroductionMOTIVATION TO HAVE CHILDREN...ANXIETY ABOUT THE HEALTH...PSYCHOSOCIAL ASPECTS OF CANCER...PSYCHOSOCIAL ASPECTS OF...CONCLUSIONSReferences |
|---|
(1) Lucas JW, Schiller JS, Benson V. Summary health statistics for United States adults: National Health Interview Survey, 2001. National Center for Health Statistics, Vital Health Stat 10. 2004.
(2) United States Census Bureau. US Summary 2000: Census 2000 Profile. Washington, DC: Government publication C2KPROF00US; 2002.
(3) MacDorman MF, Minino AM, Strobino DM, Guyer B. Annual summary of vital statistics—2001. Pediatrics 2002;110:1037–52.
(4) Bachu A, O'Connell M. Fertility of American women: June 2000. Current Population Reports, P20–543RV. U.S. Census Bureau, Washington, DC, 2001.
(5) United Nations Population Division of the Department of Economic and Social Affairs. Wall chart: World Marriage Patterns 2000. Available at: http://www.un.org/esa/population/publications/worldmarriage/worldmarriage.htm. Accessed: April 23, 2004.
(6) Aziz N, Rowland JH. Trends and advances in cancer survivorship research: Challenge and opportunity. Semin Radiat Oncol 2003;13:248–66.[CrossRef][ISI][Medline]
(7) Surbone A, Petrek JA. Childbearing issues in breast carcinoma survivors. Cancer 1997;79:1271–8.[CrossRef][ISI][Medline]
(8) Dow KH. Having children after breast cancer. Cancer Practice 1994;2:407–13.[Medline]
(9) Bandyck EA, Gilmore MA. Perceived concerns of pregnant women with breast cancer treated with chemotherapy. Oncol Nurs Forum 1995;22:975–7.[Medline]
(10) Dunn J, Steginga SK. Young women's experience of breast cancer: Defining young and identifying concerns. Psychooncology 2000;9:137–46.[CrossRef][Medline]
(11) Siegel K, Gluhoski V, Gorey E. Age-related distress among young women with breast cancer. J Psychosoc Oncol 1999;17:1–20.
(12) Rieker PP, Fitzgerald EM, Kalish LA. Adaptive behavioral responses to potential infertility among survivors of testis cancer. J Clin Oncol 1990;8:347–55.[Abstract]
(13) Green D, Galvin H, Horne B. The psycho-social impact of infertility on young male cancer survivors: a qualitative investigation. Psychooncology 2003;12:141–52.[CrossRef][Medline]
(14) Schover LR, Rybicki LA, Martin BA, Bringelsen, KA. Having children after cancer: a pilot survey of survivors' attitudes and experiences. Cancer 1999;86:697–709.[CrossRef][ISI][Medline]
(15) Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol 2002;20:1880–9.
(16) Swerdlow AJ, Jacobs PA, Marks A, Meyer EJ, Young T, Barber JC, et al. Fertility, reproductive outcomes, and health of offspring, of patients treated for Hodgkin's disease: an investigation including chromosome examinations. Br J Cancer 1996;74:291–6.[ISI][Medline]
(17) Meistrich M, Byrne J. Genetic disease in offspring of long-term survivors of childhood and adolescent cancer treated with potentially mutagenic therapies. Am J Hum Genet 2002;70:1069–71.[CrossRef][ISI][Medline]
(18) Sankila R, Olson JH, Anderson H, Garwicz S, Glattre E, Hertz H, et al. Risk of cancer among offspring of childhood-cancer survivors. Association of the Nordic Cancer Registries and the Nordic Society of Paediatric Haematology and Oncology. N Engl J Med 1998;338:1339–44.
(19) Green DM, Whitton JA, Stovall M, Mertens AC, Donaldson SS, Ruymann FB, et al. Pregnancy outcome of female survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Am J Obstet Gynecol 2002;187:1070–80.[CrossRef][ISI][Medline]
(20) Green DM, Whitton JA, Stovall M, Mertens AC, Donaldson SS, Ruymann FB, et al. Pregnancy outcome of partners of male survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol 2003; 21:716–21.
(21) Berry DL, Theriault RL, Holmes FA, Parisi VM, Booser DJ, Singletary SE, et al. Management of breast cancer during pregnancy using a standardized protocol. J Clin Oncol 1999;17:855–61.
(22) Weisz B, Schiff E, Lishner M. Cancer in pregnancy: maternal and fetal implications. Hum Reprod Update 2001;7:384–93.
(23) Narod SA. Hormonal prevention of hereditary breast cancer. Ann NY Acad Sci 2001;952:36–43.
(24) Rebbeck TR, Lynch HT, Neuhausen SL, Narod SL, Van't Veer L, Garber JE, et al. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. N Engl J Med 2002;346:1616–22.
(25) Rechitsky S, Verlinsky O, Chistokhina A, Sharapova T, Ozen S, Masciangelo,et al. Preimplantation genetic diagnosis for cancer predisposition. Reprod Biomed Online 2002;5:148–55.[Medline]
(26) Lavery SA, Aurell R, Turner C, Castello C, Veiga A, Barri PN, et al. Preimplantation genetic diagnosis: patients' experiences and attitudes. Hum Reprod 2002;17:2464–7.
(27) Gwyn KM, Theriault RL. Breast cancer during pregnancy. Curr Treat Options Oncol 2000;1:239–43.[Medline]
(28) Schover LR. Psychosocial issues associated with cancer in pregnancy. Semin Oncol 2000;27:699–703.[ISI][Medline]
(29) Wenzel L, Berkowitz RS, Newlands E, Hancock B, Goldstein DP, Seckl MJ, et al. Quality of life after gestational trophoblastic disease. J Reprod Med 2002;47:387–94.[ISI][Medline]
(30) Pregnant with Cancer. Available at: http://www.pregnantwithcancer.org. Accessed: April 29 2004.
(31) National Adoption Information Clearinghouse, Cost of Adopting (updated August 2, 2000). Available at: http://www.calib.com/naic/pubs/s_cost.htm.
(32) Adoption after Cancer. Available at: http://groups.yahoo.com/group/adoption-after-cancer/. Accessed: April 29, 2004.
(33) Ethics Committee of the American Society for Reproductive Medicine. Informing offspring of their conception by gamete donation. Fertil Steril 2004;81:527–31.[CrossRef][ISI][Medline]
(34) Gottlieb C, Lalos O, Lindblad F. Disclosure of donor insemination to the child: the impact of Swedish legislation on couples' attitudes. Hum Reprod 2000;15:2052–6.
(35) Golombok S, MacCallum F, Goodman E, Rutter M. Families with children conceived by donor insemination: a follow-up at age twelve. Child Dev 2002;73:952–68.[CrossRef][ISI][Medline]
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  M. Geens, E. Goossens, G. De Block, L. Ning, D. Van Saen, and H. Tournaye Autologous spermatogonial stem cell transplantation in man: current obstacles for a future clinical application Hum. Reprod. Update, March 1, 2008; 14(2): 121 - 130. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 C. Hammond, J. R. Abrams, and K. L. Syrjala Fertility and Risk Factors for Elevated Infertility Concern in 10-Year Hematopoietic Cell Transplant Survivors and Case-Matched Controls J. Clin. Oncol., August 10, 2007; 25(23): 3511 - 3517. [Abstract] [Full Text] [PDF]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||