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Journal of Clinical Oncology, Vol 20, Issue 7 (April), 2002: 1880-1889
© 2002 American Society for Clinical Oncology

Knowledge and Experience Regarding Cancer, Infertility, and Sperm Banking in Younger Male Survivors

By Leslie R. Schover, Kimberly Brey, Alan Lichtin, Larry I. Lipshultz, Sima Jeha

From the Departments of Behavioral Science and Pediatrics, University of Texas M.D. Anderson Cancer Center, and Scott Department of Urology, Baylor College of Medicine, Houston, TX; and Taussig Cancer Center, Cleveland Clinic Foundation, Cleveland, OH.

Address reprint requests to Leslie R. Schover, PhD, Department of Behavioral Science, University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Box 243, Houston, TX 77030-4009; email: lschover{at}mdanderson.org


    ABSTRACT
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
PURPOSE: The goal of this study was to survey male patients aged 14 to 40 years at diagnosis and recently treated in two cancer centers to determine their knowledge, attitudes, and experiences regarding cancer-related infertility and sperm banking.

PATIENTS AND METHODS: A postal survey about cancer-related infertility and sperm banking was offered to 904 men diagnosed with cancer within the previous 2 years. Eight percent opted out of the study. The others were sent the survey, with a cover letter stating elements of informed consent.

RESULTS: Although the return rate was only 27%, yielding a sample of 201 men, responders did not differ significantly from nonresponders by institution, age, ethnicity, or cancer site. Overall, 51% of men wanted children in the future, including 77% of men who were childless at cancer diagnosis. Despite some anxieties about their own survival and risks to their children’s health, men felt that the experience of cancer increased the value they placed on family closeness and would make them better parents. Only 60% of men recalled being informed about infertility as a side effect of cancer treatment, and just 51% had been offered sperm banking. Those who discussed infertility with their physicians had higher knowledge about cancer-related infertility and were significantly more likely to bank sperm. Only 24% of men banked sperm, including 37% of childless men. Lack of information was the most common reason for failing to bank sperm (25%).

CONCLUSION: All men who are about to receive cancer treatment that could impair fertility should be counseled about such side effects and given adequate information to make an informed decision about banking sperm.


    INTRODUCTION
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
ALTHOUGH INFERTILITY is a well-documented consequence of cancer treatment,1 very little research has focused on the psychosocial consequences for cancer survivors. Infertility after cancer treatment is particularly common for male survivors of childhood cancer2 and for testicular cancer survivors.3,4 Long-term survivors of testicular cancer or Hodgkin’s disease who did not have children at the time of their cancer diagnosis are likely to be distressed about fertility.3-5

In a previous pilot study, the first author (L.R.S.) surveyed a sample of both male and female cancer survivors diagnosed before age 35 about their attitudes and experiences related to having children after cancer.6 Respondents were an average of 5.5 years after diagnosis at the time of the survey, and had been treated at the Cleveland Clinic Foundation. Men were significantly less likely than women to participate in the survey (male response rate, 36%). Few other sex differences were found, with 76% of childless cancer survivors wanting to have children in the future, and only 6% feeling that their experience of cancer had decreased their wish for children. Over 80% of respondents felt that having had cancer would actually make them better parents, and 94% felt healthy enough to be a good parent. About a quarter of the respondents were quite distressed about infertility and only 57% recalled receiving information from a health care provider about the risks of infertility related to cancer treatment. Respondents also had many concerns that had typically not been addressed by health care providers about the risks of birth defects or cancer for their own children.

One advantage for men diagnosed with cancer is the availability of sperm banking. With routine semen cryopreservation, the majority of men will have viable sperm available for infertility therapy, even though their semen quality is often somewhat impaired at the time of cancer diagnosis.7-9 Using newer in vitro fertilization techniques, only one sperm cell is needed to fertilize each oocyte recovered from the female partner, so that freezing even one ejaculate before starting cancer treatment provides a reasonable chance of having a biologic child.10 Although ovarian tissue cryopreservation is a new option for women, it has no track record of resulting in a successful, live birth,10,11 and is far more invasive and expensive than sperm banking. Both in Europe and in the United States, sperm banking is being advocated as an option that should be offered to any man before he begins cancer treatment that has the potential to impair his fertility.12-16 More attention is also being focused on offering sperm banking to adolescent cancer patients.17

In our pilot cohort, only 19% of men (including just 24% of men who were childless) had banked sperm. The most common reason for not banking (cited by 25% of men) was lack of information about it at the time of treatment planning.6 As part of a project to create a computerized, multimedia educational and decision aid on sperm banking for physicians and patients, we undertook a new, separate, and larger survey of young men recently treated for cancer to attempt to confirm and elaborate the results of our previous research.


    PATIENTS AND METHODS
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Subjects
An introductory letter about the postal survey was sent to 820 men from the tumor registry of the University of Texas M.D. Anderson Cancer Center and 84 men from the patient registry of the Cleveland Clinic Foundation’s Taussig Cancer Center. Men were identified from the most recent 2 years of the tumor registries of the respective institutions. Men were included in the sample if they had a new diagnosis of cancer, were age 14 to 40 years at the time, and were currently living in the United States. Men were excluded if their cancer treatment did not include at least one of the following: chemotherapy; radiation to the whole body, pelvis, brain, or abdomen; or pelvic surgery. These treatments were chosen because they could potentially impact fertility.

Survey
All materials and methods were approved by the institutional review boards of the University of Texas M.D. Anderson Cancer Center (UTMDACC) and the Cleveland Clinic Foundation, as well as the research review committee of the Cleveland Clinic Foundation’s Taussig Cancer Center (CCF). The introductory letter stated, in part: "We would like you to fill out a questionnaire that asks about your recent experience with cancer and its impact on your fertility, plans to have children in the future, and concerns about children’s health. The questionnaire will ask about your knowledge and feelings about these topics, including whether or not you decided to bank sperm before cancer treatment." If men did not want to receive a questionnaire they could send back a stamped postcard opting out of further contacts. For subjects under age 18 at the time of the survey, all correspondence was sent to the parents so that they could decide whether to permit their son to participate.

The actual questionnaire was sent with a cover letter that set forth the elements of informed consent and gave a number to call if the recipient wanted more information about cancer-related infertility. The letter mentioned that only some men treated for cancer had problems with fertility. Men were told that their questionnaires would be kept anonymous. A code number was provided in order to send one reminder letter to men who had not returned the questionnaire within the first several weeks, and to send a prepaid phone card worth $5 to men who returned their questionnaires. Men were assured that the code number would be removed from their questionnaire after it was received.

The questionnaire began with a 21-item true/false test of knowledge about cancer-related male infertility and sperm banking. Patients were also asked for demographic and medical information, including site of cancer treatment, current age, age at diagnosis, type of cancer, type of cancer treatment, educational level, religion, religious activity level, ethnicity, relationship status, and number of biologic children, stepchildren, and adopted children. Biologic children were classified as born before cancer diagnosis, conceived during cancer treatment, or conceived after cancer treatment was over. Other multiple-choice items assessed the following factors: whether or not infertility and sperm banking had been mentioned before cancer treatment and by whom; whether or not the man had banked sperm before cancer treatment, and if not, the reason(s); whether a family member or significant other had influenced this decision; how much the man would like a child in the future; whether he and a partner ever had trouble conceiving (after regular, unprotected intercourse for >= 12 months); history of infertility treatment; and history of voluntary sterilization, including whether the decision was cancer-related.

Men were asked how much they had worried that cancer could interfere with fertility, and to rate their current fertility compared with most men of their age. Items assessed the number of first-degree relatives with cancer, whether the man believed his cancer was inherited, and whether he had ever discussed with a health professional his children’s cancer risk or their health risks related to his cancer treatment. He was asked if he would seek genetic counseling if planning a pregnancy, and whether his experience of cancer had affected his wish to have children.

Respondents were then asked how much they agreed on a five-point scale from "agree strongly" to "disagree strongly" with 21 statements about parenthood after cancer. Our previous survey suggested that important issues included the following: seeing a positive influence of the cancer experience on parenting skills; concern about one’s own future health or mortality affecting ability to parent; concern about the health of offspring; willingness to consider parenting a nonbiologic child; and practical barriers related to cancer, such as financial or marital limitations. These items are listed in Table 1 grouped by topic, but were presented in a mixed order in the questionnaire.


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Table 1.  Items From the Cancer and Parenthood Scale, by Total Sample (N = 201), Men Currently Without Biologic Children (n = 84), and Men Currently With Children (n = 117)
 

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Table 1A.  (Continued)
 
Statistical Analyses
Statistical analyses were performed using the Statistical Package for the Social Sciences version 10.0 (SPSS, Inc, Chicago, IL). Analyses included descriptive statistics, such as mean, median, and SD. Categorical variables were compared among the groups of interest using the Pearson {chi}2 test. Continuous variables were compared among groups using the Student’s t test to compare two groups or analysis of variance to compare multiple groups. All statistical tests were two-sided, and P < .05 was used to indicate statistical significance.


    RESULTS
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Response Rate
Eight percent of 904 men contacted opted out of the survey. Of those sent a questionnaire, 201 completed and returned it, a response rate of 27% out of the original 904, excluding men who were deceased or whose mailing addresses were inaccurate. Response rates were not significantly different in men recruited from UTMDACC (26%) versus CCF (32%).

Demographic and Medical Characteristics of the Sample
Table 2 compares the current age, ethnicity, and cancer sites of the 201 responders and the 703 men who did not return the survey. Although there was a slight underrepresentation of minorities in the responders, the difference did not reach significance ({chi}2[3] = 6.514, not significant). A t test (t[396] = 1.917) suggested a trend (P < .06) for the responders to be older, but their mean age was only a year more than that of the nonresponders, with very similar range and variability in both samples. Only 15 teenagers under age 18 were included in the original sample and two returned their questionnaires. The mean age at diagnosis of respondents was 30 years (SD, 6.34 years). It had been an average of 3 years since the men’s cancer diagnosis. As might be expected, the most frequent cancer types in the responder sample were leukemia, Hodgkin’s disease (n = 28), non-Hodgkin’s lymphoma (n = 24), testicular cancer, and brain tumors. An examination of response rates by tumor type does not suggest any clear pattern of bias, although response rates were lower for men with colorectal cancer, thyroid tumors, or types of cancer less common in this age group. It was not possible to characterize subtypes of lymphoma with information available for nonresponders.


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Table 2.  Age, Ethnicity, and Type of Cancer in Responders Versus Nonresponders
 
Men in our sample were well educated, with only 3% having less than a high school education, 34% a bachelor’s degree, and 17% a postgraduate degree. We had no information on the education of men who did not respond, but there may well be bias towards higher education in the responders. Religious affiliation included 33% Catholic, 33% Protestant, 4% Jewish, 9% none, and 21% other. Thirty-five percent rated their religious practice as very active, 33% moderately active, 16% a few times a year, and 16% inactive. Sixty-nine percent of men were married, 7% separated or divorced, and 24% never married. Of the unmarried men, 25% were currently in a committed relationship with a partner.

All men in the sample had at least had a consultation at UTMDACC and CCF, but in fact only 49% of the sample received most of their cancer treatment at UTMDACC and 9% at CCF. Others were treated at a total of 84 other institutions, with a wide geographic distribution. By self-report, 69% of men received most of their cancer treatment at a cancer center, 12% at a local hospital, and 19% at a private oncology clinic.

Table 3 lists the types of cancer treatment that potentially affect fertility, and their frequency in the respondent sample. As expected from the selection criteria for our sample, all men had at least one type of cancer treatment with potential to impair fertility, and of course some had a combination of such treatments. We did not assess types or doses of chemotherapy drugs, or radiotherapy doses, because we were depending on men’s self-reports of their cancer treatment, and did not believe that detailed information on treatment protocols would be helpful to our aims.


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Table 3.  Respondents’ Self-Reports of Receiving Treatments With Potential for Infertility
 
Parental Status and Concerns about Infertility
Table 4 lists men’s parental status. About half of the men had no biologic child at the time of their cancer diagnosis, and 15% were subsequently able to father biologic children. Adoption or donor insemination was only used by a small minority of men, at least at this relatively short-term follow-up. Men who had children at the time of cancer diagnosis were significantly older (mean ± SD, 32.99 ± 4.39 years v 27.94 ± 6.95 years; t[198] = 6.12, P < .001). They were more likely to be married ({chi}2[2] = 45.74, P < .001). Men with children also were more active in their religious practices ({chi}2[3] = 9.19, P = .027).


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Table 4.  Parental Status of Respondents
 
When asked how much they would like to have a child in the future, 41% of respondents definitely wanted a child, 11% probably wanted one, 12% were unsure, and 36% did not want a child. Men childless at the time of diagnosis were more likely to want children in the future [76% v 26% of men who already had children ({chi}2[4] = 55.95, P < .0001)]. As would be expected, men who wanted children in the future were more anxious about cancer-related infertility ({chi}2[16] = 100.17, P < .0001). For most men (68%), the experience of cancer had not influenced their wish to have children, but 16% felt it had increased their wish to be a father, and 16% felt it decreased their wish. Cancer was particularly likely to increase the wish to have children in men childless at the time of diagnosis [24% compared with 7% of men with children ({chi}2[2] = 10.09, P = .006].

Only 60% of men recalled someone on their health care team mentioning that infertility could be a side effect of their cancer treatment. The most common health professional to discuss cancer-related infertility was the physician treating the man’s cancer (55% of entire sample), followed by a nurse (21% of entire sample), or a family physician (8%). A family member or friend discussed infertility 12% of the time.

Since the cancer diagnosis, 32% of men had worried at least a fair amount about cancer-related infertility. Not surprisingly, men who were childless at cancer diagnosis worried more about fertility ({chi}2[4] = 37.42, P < .001). When asked their current view of their own fertility, 28% felt they were less fertile than most men of their age, and 25% believed themselves to be infertile. About 19% reported having had difficulty conceiving a child, but only 5% had ever had infertility treatment (including two couples who tried in vitro fertilization). Although 14% of men were in a relationship in which one partner had undergone voluntary sterilization, only two men reported that a decreased wish for children after cancer influenced this choice.

Genetic Issues
We asked how many first-degree relatives (defined in the questionnaire) had cancer themselves. Twenty-two percent of men had one first-degree relative with cancer, 3% had two relatives, and 1% had three relatives with cancer. Only 8% of men attributed their cancer to an abnormal gene they had inherited from a parent, but 28% were unsure. Only 43% had ever discussed with a health professional whether their children would have an increased risk of cancer, and only 26% had ever discussed whether the health of a child born after a parent’s cancer treatment could be affected by those treatments. If they were currently planning a pregnancy, 62% would be at least somewhat likely to seek genetic counseling about risks to a child’s health. Men’s beliefs that their cancer might be inherited did not coincide with their decisions whether to bank sperm, but were related significantly to the belief that their children would experience increased cancer risk (F[2, 198] = 13.58, P < .001).

Issues Related to Sperm Banking
In this sample of men exposed to cancer treatments with potential to damage fertility, only 51% recalled anyone mentioning the option of sperm banking before their cancer treatment. Sperm banking was more likely to be mentioned to men who received most of their treatment at private oncology clinics (62% received information), compared with those treated at cancer centers (52%), or in local hospitals (29%) ({chi}2[2] = 6.46, P = .039). There was not a significant difference between men seen at UTMDACC versus CCF. The most common health professional to discuss sperm banking was the oncology physician (40% of the entire sample), followed by a nurse (14% of the sample). Men who had no recall of being told by a health provider about sperm banking were significantly less likely to have chosen to cryopreserve sperm (11% banked sperm when it was not offered by a health professional v 36% when it was offered; Fisher’s exact test = 16.40, P < .001). Sperm banking was not offered differentially according to the man’s ethnicity or educational level.

Only 24% of all respondents chose to cryopreserve sperm before cancer treatment. Table 5 lists the most common reasons men gave for not banking sperm (men could check more than one reason, or write in their own response), stratified by whether or not the respondent had at least one child at cancer diagnosis, the time of the decision. The most frequent factor was that men were not given the information they needed by their health care team (25% combining those who had no recall of being offered the option to bank and those who could not get enough information about it to make a choice). As might be expected, the next most common reason for not banking sperm was already having all the children a man wanted (20% of men with children) or not wanting more children in the future (10% of men with children and 5% of childless men).


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Table 5.  Reasons Why Men Did Not Bank Sperm and Parental Status at Cancer Diagnosis (childless [n = 104] v >= 1 child [n = 97])
 
Seventeen percent of men reported that a family member or significant other had very much influenced their decision to bank sperm. Of these 31 men, 27 said that the person influencing them was a wife or fiancee, and five named a parent. One mentioned a brother.

Other factors correlated with having banked sperm included the following: being childless at diagnosis (37% of childless men banked v 11% of those with children; Fisher’s exact test = 18.61, P < .001); having a greater desire for future children ({chi}2[4] = 40.28, P < .001); and having more current anxiety about the impact of cancer treatment on fertility ({chi}2[4] = 29.51, P < .001). Men who banked sperm were younger (mean age at diagnosis ± SD, 27.15 ± 5.18 years for men who banked and 31.31 ± 6.37 years for others, t[195] = 4.07, P < .001). They were also more educated (t[196] = -2.52, P = .012). Fifty-four percent of Hodgkin’s patients banked sperm, whereas only 17% of non-Hodgkin’s lymphoma patients and 15% of leukemia patients banked their sperm. Sarcoma patients banked 36% of the time, whereas melanoma, testicular, and brain cancer patients opted to bank their sperm 29%, 27%, and 26% of the time, respectively ({chi}2[9] = 21.84, P = .009).

Factors that did not correlate significantly with sperm banking included ethnicity, marital status, and religious activity level. Men whose religious affiliation was either Jewish or none were more likely to bank than those who were Protestant, Catholic, or other, however ({chi}2[4] = 10.69, P = .30). Men were more likely to bank sperm if they received most of their treatment in a private oncology clinic (35%), compared with men treated at cancer centers (23%) or local hospitals (13%), but this difference did not achieve statistical significance. There was no differential rate of sperm banking in the UTMDACC versus CCF samples.

Knowledge About Cancer-Related Infertility
The mean score on the 21-item true/false knowledge test was 15.94 (SD, 2.64). Items answered incorrectly by over 33% of the sample suggested that men did not know that semen quality was often reduced after cancer diagnosis; that infertility is more common after adolescent cancer treatment in boys than in girls; that it is not necessary to have thousands of sperm cells for use in modern infertility treatments; that even with today’s cancer treatments most male patients will not recover good fertility; and that children of cancer survivors do not have an unusual risk of cancer themselves. Men also underestimated the costs of adoption.

Men who had been informed about the potential for cancer-related infertility by their health care providers scored higher on knowledge (mean ± SD, 15.51 ± 2.50 for uninformed men and 16.38 ± 2.47 for informed men; t[196] = -2.42, P = .017), suggesting that they received a more comprehensive education about the issues. Knowledge scores did not covary significantly with having been informed of the option of sperm banking, but men who chose to bank sperm scored significantly higher on the test than men who did not bank (t[196] = -3.08, P = .002).

Attitudes About Being a Parent After Cancer
Table 1 lists the items used to assess attitudes about parenthood after cancer, with the five-point response scale collapsed into three categories of agree, unsure, and disagree. Responses are reported for the total sample, and compared for men who remained childless at the time of the survey versus those with children.

A large majority of the respondents see the cancer experience as having increased the value of family life and enhanced their parenting skills. Men who have children were significantly more likely to agree with three of these five items. More ambivalence is seen in responses about future health and parenting. Ninety-two percent of men see themselves as healthy enough to be good fathers and 66% would want to be a parent even if they died prematurely. On the other hand, 66% worry about living to see their children grow up and 73% would not want to die and leave their spouse to face single parenthood. Men with children were significantly more likely to agree that they would want to be a parent even if they died young, and to worry about surviving to see their children grow up.

Less than a quarter of men see their cancer as having handicapped them for parenthood financially or in finding a mate, although 22% of childless men compared with only 7% of men with children report trouble attracting the right mate to start a family. Eighty-four percent say that having had cancer makes them more anxious about the health of their children. Despite the lack of scientific evidence for health risks for the offspring of cancer survivors, 24% of men believe their children may be at risk because of the father’s cancer treatment, and 31% worry about increased cancer risk for their children. Many men are also unsure whether these risks apply. Being a parent already does not significantly influence risk estimation. Only a minority of men would let these concerns interfere with having a biologic child, however. If they were infertile and did not have the option of having a biologic child, 61% of men would be willing to consider having a child through adoption and 23% through donor insemination (23%). In general, childless men expressed more positive attitudes to donor insemination.

A factor analysis using the maximum likelihood extraction method and Direct Oblimin (Delta = 0.5) with Kaiser normalization for rotation of correlated factors was performed using the responses of 201 men to the 21 attitude questions. A three-factor solution was revealed that explained 35% of the variance in men’s responses. Table 6 lists the items and their weighting on the factors. Two items did not load at a level of at least 0.300 on any of the factors, and were deleted. Cronbach’s alpha coefficient was calculated for each of the three factors. Only factor 1 achieved an acceptable level of 0.7739. Cronbach’s alpha coefficient was 0.4058 for factor 2, and 0.3091 for factor 3. The factors appeared to measure cancer enhancing the value of parenthood, health-related anxieties, and investment in biologic parenthood. In the future, this scale may be refined and validated with both men and women for use as a measurement of attitudes toward parenthood after cancer.


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Table 6.  Factor Structure and Loadings of Attitudes to Parenthood After Cancer Scale
 
Despite the suboptimal internal consistencies of two of the factors, t tests were calculated using scores on each factor to compare the responses of men who banked sperm and men who did not bank sperm. Men who had banked sperm were significantly more likely to have health-related anxieties than men who did not (t[159] = -3.077, P = .002). We also compared men who were childless at cancer diagnosis with those who had children. Men with children were significantly more likely to see cancer as having enhanced the value they placed on parenthood (t[160] = 2.778, P = .006).


    DISCUSSION
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
This survey confirms the importance of fatherhood to younger men surviving cancer. Over half of men would like to have a child in the future, including three fourths of men who were childless at diagnosis. For the great majority of men, the experience of cancer increases the importance they put on family closeness, as well as enhancing their self-confidence in being good parents. Men who already had children at the time of their diagnosis are particularly likely to perceive their cancer experience as having increased their emotional investment in parenting as well as their parenting skills. Despite men’s anxieties about surviving to see their children grow up and about health risks to their children, 24% of childless men felt that having cancer had increased their wish to have children.

Infertility was a common stressor for our respondents. About a third of men had worried at least a fair amount about their fertility. These anxieties were especially strong for childless men. Fifty-three percent of men perceived their fertility as decreased. In general, results from this survey were strikingly similar to our previous pilot findings.6 Almost exactly as in our pilot study,6 19% of respondents had experienced trouble conceiving a child, despite regular attempts for a year or more, but only 5% had sought infertility treatment. Men surveyed in this sample had a shorter follow-up than those in our previous study (3 v 5.5 years), but in general, cancer patients may be somewhat less likely to seek treatment than those with other causes of infertility.6,18,19

It is striking that in this group of men, selected because they were likely to have had cancer treatment that could impair fertility, only 60% recalled a health provider having discussed fertility before cancer treatment began. Even fewer recalled being given the option of banking sperm (51%), having had a discussion about health risks to children conceived after their cancer treatment (26%), or having been given information about the risk of cancer for their children (43%). Unfortunately, a companion survey of oncologists at the same institutions suggests that these patients are not just forgetting information that was provided to them, but rather that their physicians often failed to discuss these topics.20

This failure of communication has clear consequences. Men who were counseled about infertility by their oncology team (typically the oncology physician or, less commonly, a nurse) had significantly better knowledge about cancer-related infertility. Those who were told about sperm banking by their providers were far more likely to cryopreserve semen (36% v 11% of men who found out about sperm banking through other means). Having more knowledge about infertility also covaried positively with deciding to bank sperm.

Men treated at private oncology clinics were the most likely to have been informed about sperm banking as an option, followed by those treated at cancer centers, and then those seen at private hospitals. It is important to remember, however, that all men surveyed had at least been evaluated either at UTMDACC, one of the largest and most prestigious cancer centers in the United States, or at CCF, a highly regarded tertiary referral center with its own in-house sperm bank. Thus, men in our sample were probably more likely than the average cancer survivor to receive information about cancer-related infertility. Cancer type also made a difference, with men with Hodgkin’s disease by far the most likely to bank sperm, perhaps because of their typically young age and good prognosis, although we have no explanation why twice as many men with Hodgkin’s disease banked sperm as men with testicular cancer, a group even more at risk for cancer-related infertility.3,4,12,18

Men who banked sperm were also more likely to have been childless (37% v 10% of men who already had at least one child) and, not surprisingly, were younger and more highly educated. Although religious devoutness in general was not related to the decision to bank sperm, Jewish men and those with no religious affiliation were somewhat more likely to bank, perhaps because of more liberal attitudes about the acceptability of assisted reproductive techniques. Very few men reported that they refused sperm banking because of religious or ethical concerns, however.

As in our previous survey,6 the most common barrier to sperm banking was not having been informed about the option. Twenty percent of our sample cited lack of information as the reason for not having banked sperm, and another 5% had known about the possibility, but were unable to get the information they needed in time. The other frequent reasons for not banking sperm were that a man had finished having children, or believed he would not want children in the future. Some of these decisions are later regretted, as noted by one of our respondents who had divorced after his cancer and wished he had banked sperm so that he could have a child in a new relationship. It is interesting that the cost of sperm banking was not a frequent barrier cited by patients, despite the perception of oncology physicians that it is a common obstacle.20

Although only a small minority of our respondents were likely to belong to a family with an inherited cancer syndrome, 31% believed their children would definitely be at increased risk for cancer and 62% would consider having genetic counseling if planning a future pregnancy with their spouse. A somewhat smaller percentage, about one fourth, worried that their past cancer treatment could affect the health of children conceived afterward. The wish to have a biologic child was strong, however, despite concerns about health risks, and only 20% of men considered not having children because of these worries. It was even less common for men to choose adoption or donor insemination as alternatives to having a genetic child who might face unusual health risks, although childless men were more receptive to using donor insemination. We have observed similar preferences for having biologic children despite genetic risks in couples with male factor infertility.21,22

The most important weakness of this survey was the low response rate of 27%. It was even somewhat less than the response rate for men in our previous pilot study,6 perhaps because the current cohort of men was diagnosed more recently and less likely to have recovered full health. We followed principles of survey research designed to enhance return rates, sending an introductory letter from a trusted institution, using a reminder letter, and offering a small incentive for participating.23,24 It is somewhat reassuring that there were no obvious biases in ethnicity, age, or cancer site in the men who did respond. We would hypothesize that men who participated were probably more likely to be interested in the issues of infertility. Men who had completed their families before being diagnosed with cancer may have been less likely to fill out the survey. Thus, we may be overestimating the percentage of men who are distressed about infertility.

Although our results were quite similar to those in our pilot study, this sample of men was larger and more diverse than those who participated in the pilot,6 including a higher percentage of minorities (16% v 9% in our previous sample), and men from the registries of two cancer centers rather than just one. Given the high educational level of our sample, however, and the low frequency of indigent patients seen at the two cancer centers, we are probably overestimating the knowledge about infertility and the rate of sperm banking for cancer survivors generally across the United States. In fact, these data suggest that men treated in smaller hospitals are less likely than men treated in private clinics or cancer centers to receive counseling about infertility and sperm banking.

In conjunction with our past pilot survey,6 and our survey of oncology physicians about sperm banking,20 we believe these data make a strong case that oncology health care providers are not routinely meeting men’s needs for information about infertility and sperm banking. Men continue to value parenthood despite their experience of cancer, and are often distressed about cancer-related infertility, especially if they are childless. Therefore, every man about to begin cancer treatment that might impair his fertility should be given adequate information to make an informed decision about banking sperm. Concerns about fertility and about the health of actual and potential children should also be routinely discussed when cancer survivors receive follow-up care. We would like to see these procedures become a standard of care in fact, as well as in theory.


    ACKNOWLEDGMENTS
 
Supported by grant no. 1 R25 CA 88088-1 from the National Cancer Institute, Bethesda, MD (to L.R.S.).

We thank Valorie Rose for help in data collection from the Cleveland sample. The patient population was identified through a search of the tumor registry database maintained by the Department of Medical Informatics, University of Texas M.D. Anderson Cancer Center.


    REFERENCES
 TOP
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 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
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Submitted August 30, 2001; accepted December 13, 2001.




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