Clare Moynihan

Fertility, gonadal and sexual function in survivors of testicular cancer

Modern treatments cure most testicular cancer patients, so an important goal is to minimise toxicity. Fertility and sexual functioning are key issues for patients. We have evaluated these outcomes in a cross-sectional study of long-term survivors of testicular cancer. In total, 680 patients treated between 1982 and 1992 completed the EORTC Qly-C-30(qc30) questionnaire, the associated testicular cancer specific module and a general health and fertility questionnaire. Patients have been subdivided according to treatment received: orchidectomy either alone (surveillance, S n=169), with chemotherapy (C, n=272), radiotherapy (R, n=158), or both chemotherapy and radiotherapy (C/RT n=81). In the surveillance group, 6% of patients had an elevated LH, 41% an elevated FSH and 11% a low (<10 nmol l−1) testosterone. Hormonal function deteriorated with additional treatment, but the effect in general was small. Low testosterone was more common in the C/RT group (37% P=0.006), FSH abnormalities were more common after chemotherapy (C 49%, C/RT 71% both P<0.005) and LH abnormalities after radiotherapy (11% P<0.01) and chemotherapy (10%, P<0.001). Baseline hormone data were available for 367 patients. After treatment, compared to baseline, patients receiving chemotherapy had significantly greater elevations of FSH (median rise of 6 (IQR 3–9.25) iu l−1 compared to 3 (IQR 1–5) iu l−1 for S; P<0.001) and a fall (compared to a rise in the surveillance group) in median testosterone levels (−2 (IQR −8.0 to −1.5) vs 1.0. (IQR −4.0–4.0) P<0.001). Patients with low testosterone (but not elevated FSH) had lower quality of life scores related to sexual functioning on the testicular cancer specific module and lower physical, social and role functioning on the EORTC Qly C-30. Patients with a low testosterone also had higher body mass index and blood pressure. Treatment was associated with reduction in sexual activity and patients receiving chemotherapy had more concerns about fathering children. In total, 207 (30%) patients reported attempting conception of whom 159 (77%) were successful and a further 10 patients were successful after infertility treatment with an overall success rate of 82%. There was a lower overall success rate after chemotherapy (C 71%; CRT 67% compared to S 85% (P=0.028)). Elevated FSH levels were associated with reduced fertility (normal FSH 91% vs elevated 68% P<0.001). In summary, gonadal dysfunction is common in patients with a history of testicular cancer even when managed by orchidectomy alone. Treatment with chemotherapy in particular can result in additional impairment. Gonadal dysfunction reduces quality of life and has an adverse effect on patient health. Most patients retain their fertility, but the risk of infertility is likely to be increased by chemotherapy. Screening for gonadal dysfunction should be considered in the follow-up of testicular cancer survivors.

Theories in health care and research: Theories of masculinity

This is the second in a series of six articles on the importance of theories and values in health research Series editor: Priscilla Alderson How do theories help us to grasp various truths about mens and womens responses to illness? How do theories of masculinity illuminate the reactions of young men who have lost a sexual organ and face a life threatening disease? Why are men sometimes treated differently from women in life threatening situations?1 This paper shows how theories that underlie research influence the ways in which we perceive phenomena and how we deal with them. It questions assumptions about the concept of masculinity in medicine and how these assumptions affect men. Alternative ways of seeing may widen our perceptions, but at the same time they present us with more difficulties. #### Summary points In the biological approach, sexual anatomy equates with sexual destiny. Anatomy is proof of being a man. Being a man takes on a universal status, generalisable and immutable. Aggression, reason, a need for control, competitiveness, and emotional reticence are thought to be “natural” attributes for a man2 contradiction or ambiguity is anathema to …

Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems

This qualitative interview study explored the way in which information about predictive BRCA1/2 testing and its implications for children is disseminated within the families of at‐risk men who undergo genetic testing. Twenty‐nine in‐depth interviews were carried out with family members [male patients (n = 17), their partners (n = 8) and adult children (n = 4)]. These explored the following themes: experiences of cancer and genetic testing, decision‐making about testing and the communication of test results and genetic information within the immediate family. The interviews revealed that both male patients and their partners perceive themselves, rather than health professionals, as responsible for disclosing information about genetic testing and genetic risks to their children. Parents described three different communication strategies for the disclosure of genetic information to their children: complete openness, limited disclosure and total secrecy. The adoption of a particular communication strategy was justified in terms of childrens rights to information vs their parental duties to protect their children from anxiety‐provoking information. Some of the problems arising from the adoption of different disclosure patterns are identified and the implications for clinical practice are discussed.

Evaluation of adjuvant psychological therapy in patients with testicular cancer: randomised controlled trial.

Abstract Objective: To determine the efficacy of adjuvant psychological therapy in patients with testicular cancer and to compare the characteristics and psychosocial outcomes of men who agreed to participate with those who declined to participate in a randomised trial of psychological intervention. Design: Newly diagnosed patients were asked to participate in a randomised trial of psychological support compared with standard medical care. Participants and non-participants completed self assessment questionnaires at baseline and at 2, 4 and 12 months. Setting: Testicular Tumour Unit of the Royal Marsden Hospital. Subjects: 73 of 184 (40%) eligible patients agreed to enter the randomised trial (participants) and 81 (44%) declined to participate but agreed to complete further assessments (non-participants). 30 patients wanted no further contact with the researchers. Outcome measures: Hospital anxiety and depression scale, psychosocial adjustment to illness scale, Rotterdam symptom checklist, mental adjustment to cancer scale. Only scores on the hospital anxiety and depression scale are reported for evaluating treatment efficacy. Results: 111 of 184 (60%) eligible men declined to participate in the trial. Patients with stage I disease were most likely to refuse to participate. A patient was less likely to participate if he had low volume disease and was receiving no further treatment. Likelihood of participation was associated with stage of disease and with type of primary treatment (P<0.001 for heterogeneity). Patients with early stage disease (P<0.001) and fewer physical symptoms (P<0.001) were less likely to participate. Psychosocial factors associated with participation included anxious preoccupation regarding disease (P=0.01). There were no differences in outcome between participants and non-participants during follow up. Patients seemed to gain little benefit from adjuvant psychological therapy. At 2 months change from baseline favoured the treated group in the anxiety subscale (mean difference between groups −1.41 (95% confidence interval −2.86 to 0.03)). This was not sustained when adjusted for factors related to the disease. By 12 months change from baseline seemed to favour the control group (mean difference between groups 1.66 (−0.18 to 3.50)). Conclusions: Patients with testicular cancer seem to have considerable coping abilities. Those who declined to participate in the trial differed from those who participated. Those who agreed to participate may comprise the clinical group who perceive a need for psychological support. No evidence was found to indicate a need for routinely offering adjuvant psychological therapy. Key messages Counselling for patients with cancer is widely advocated, although its effectiveness has not been fully evaluated No study of patients with cancer has evaluated a psychological intervention in young men or in a group of patients with a disease with an excellent prognosis Most patients with testicular cancer declined to participate in this randomised trial of adjuvant psychological therapy, and those who participated had more psychosocial dysfunction No evidence of benefit was observed after treatment with adjuvant psychological therapy in this group of patients There were no consistently significant differences in psychosocial outcome over one year between those who agreed to participate and those who declined to participate

Men's decision-making about predictive BRCA1/2 testing: the role of family.

Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men’s decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients’ genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members’ experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men’s testing decisions such as familial obligations are examined. The extent to which other family members—partners and adult children—were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.

Genetic testing for breast and ovarian cancer predisposition: Cancer burden and responsibility

The purpose of this study was to explore experiences of cancer in the family and motivation for predictive genetic testing among women at increased risk of developing breast and/or ovarian cancer due to their family history. Fifteen women were interviewed prior to receiving their genetic test results. A grounded theory approach was adopted to analyse the interview transcripts. The findings indicated that experiences of cancer in the family play an important role in formulating beliefs about one’s own risk and motivation for predictive genetic testing. A sense of responsibility for one’s own health and the need to take action either to prevent cancer or detect cancer at as early a stage as possible, as well as a feeling of responsibility towards children and other family members was apparent. The findings raise the question of whether there is any real choice available to these women and whether there is a negative impact on family dynamics.

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

The scope of conditions for which preimplantation genetic diagnosis (PGD) is licensed has recently been expanded in the United Kingdom to include genetic predisposition to adult-onset cancer. This qualitative interview study explores reproductive decision making, knowledge of and attitudes to reproductive genetic testing (prenatal diagnosis and PGD) with 25 women aged 18–45 years who received a positive BRCA test in the United Kingdom before having children. In this cohort of younger women, BRCA testing was motivated by risk management decisions; for some, BRCA status has affected their later decisions about having children. The perceived severity of hereditary breast/ovarian cancer (HBOC) influences thoughts about passing on the mutation to children and willingness to consider reproductive genetic testing, but most participants do not believe HBOC is a condition for which pregnancy termination is justified. PGD is considered more acceptable and advantageous because it would prevent transmission to future generations, but women have concerns about selecting embryos and the fact that they and affected family members would not have been selected. Women would also be deterred by the need to undergo in vitro fertilisation (IVF) and ovarian stimulation for PGD. Awareness of reproductive testing options was very variable among the cohort. The findings highlight the complexities of reproductive decision making for young women who knowingly carry a BRCA mutation, and the dilemmas inherent to reproductive genetic testing when the condition being tested for also affects a prospective parent. Counselling and psychological support for BRCA-positive women and couples concerning reproductive options are strongly indicated.

Juggling roles and expectations: dilemmas faced by women talking to relatives about cancer and genetic testing

Health professionals do not inform their patients’ kin about BRCA1/2 test results or genetic testing without their written consent. Thus, the onus is on women attending genetic counselling to talk to relatives about the family history and their potential increased risk. This communication process within the family is largely unexplored and provides the focus of the present study. Fifteen healthy women attending a genetics clinic for predictive testing were interviewed prior to receiving their test result and again 6 months later. A grounded theory approach was used. Findings illustrate the dilemmas women faced in juggling social roles and expectations, which had an impact on communication within the family in the context of predictive genetic testing. Tensions between responsibilities towards themselves and others and their fulfilment of social roles had an impact on who women informed and on how they did so. These factors should be considered when assigning patients the role of information provider.

Do men with prostate or colorectal cancer seek different information and support from women with cancer

Male cancer patients’ use of a national cancer information service, their requests and key predictors of these over the period April 1996 to March 1998 are presented, in comparison with women. The most frequent requests of 411 prostate, 162 male and 217 female colorectal cancer patients were similar: site-specific information, emotional support, publications, specific therapies. Research or clinical trials (P< 0.05), diet and nutrition (P< 0.001) requests differed between men with prostate and colorectal cancers; complementary therapies (P< 0.05), prognosis (P< 0.05) requests differed between male and female colorectal cancer patients. Among prostate cancer patients, employed men aged 60+ were more likely to need emotional support than retired men aged 70 +; men < 59 years old were more likely to request publications, but less likely to enquire about specific therapies than others. Among male colorectal cancer patients, employed men were less likely to request site-specific information, but more likely to need emotional support than retired men; patients from geographical areas other than Thames were more likely to request publications; patients from manual classes were less likely to enquire about specific therapies than those from non-manual classes. The complexity of information and support seeking behaviour is demonstrated; no pattern was found among men or in comparison with women. Further research is needed to enable development of services that are appropriate to individual needs and concerns.

Disclosure of Genetics Research Results after the Death of the Patient Participant: A Qualitative Study of the Impact on Relatives

When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.