Michelle Peate

Breast cancer in young women and its impact on reproductive function

BACKGROUND Breast cancer is the most common cancer in women in developed countries, and 12% of breast cancer occurs in women 20–34 years. Survival from breast cancer has significantly improved, and the potential late effects of treatment and the impact on quality of life have become increasingly important. Young women constitute a minority of breast cancer patients, but commonly have distinct concerns and issues compared with older women, including queries regarding fertility, contraception and pregnancy. Further, they are more likely than older women to have questions regarding potential side effects of therapy and risk of relapse or a new primary. In addition, many will have symptoms associated with treatment and they present a management challenge. Reproductive medicine specialists and gynaecologists commonly see these women either shortly after initial diagnosis or following adjuvant therapy and should be aware of current management of breast cancer, the options for women at increased genetic risk, the prognosis of patients with early stage breast cancer and how adjuvant systemic treatments may impact reproductive function. METHODS No systematic literature search was done. The review focuses on the current management of breast cancer in young women and the impact of treatment on reproductive function and subsequent management. With reference to key studies and meta-analyses, we highlight controversies and current unanswered questions regarding patient management. RESULTS Chemotherapy for breast cancer is likely to negatively impact on reproductive function. A number of interventions are available which may increase the likelihood of future successful pregnancy, but the relative safety of these interventions is not well established. For those who do conceive following breast cancer, there is no good evidence that pregnancy is detrimental to survival. We review current treatment; effects on reproductive function; preservation of fertility; contraception; pregnancy; breastfeeding and management of menopausal symptoms following breast cancer. CONCLUSION This paper provides an update on the management of breast cancer in young women and is targeted at reproductive medicine specialists and gynaecologists.

The fertility-related concerns, needs and preferences of younger women with breast cancer: a systematic review

Breast cancer is the most commonly diagnosed type of cancer in reproductive aged women. Adjuvant systemic therapy is recommended in most women and has been demonstrated to reduce the risk of recurrence and increase survival. However, there may be a negative impact of adjuvant systemic therapy on fertility as well as on subsequent quality of life. There are a number of fertility preservation options currently available and relevant information regarding these options should be provided prior to commencing adjuvant treatment. The aim of the review is to identify the fertility-related needs, concerns and preferences of young women with early breast cancer. The databases MEDLINE and EMBASE were searched from 1988 onwards using keywords, and examining reference lists. Of the 499 articles identified, 20 met eligibility criteria and were reviewed. Multiple fertility-related information needs specific to this group regarding menstrual changes and potential infertility attitudes to, and actual decisions made regarding, pregnancy breastfeeding and contraception emerged. Information on fertility-related decisions was rated as important, and the preferred methods for obtaining this information was consultation with a specialist or a decision aid early in the treatment plan. There is limited research about fertility-related needs, and even less on contraceptive preferences and the attitudes of health care providers towards fertility-related issues. No studies describing the development of tools to assist with decisions about fertility-related choices were identified. Young women with early breast cancer have specific fertility- and menopause-related needs and concerns, which are commonly not adequately addressed or discussed prior to commencing adjuvant therapy.

It's Now or Never: Fertility-Related Knowledge, Decision-Making Preferences, and Treatment Intentions in Young Women With Breast Cancer—An Australian Fertility Decision Aid Collaborative Group Study

PURPOSE For many young women with early breast cancer, fertility is a priority. Interventions to retain fertility options generally need to be accessed before chemotherapy, but many women do not receive information regarding these options in a timely fashion. Knowledge about fertility and decisional conflict has not previously been measured in young patients with breast cancer considering future pregnancies. METHODS One hundred eleven young women with early breast cancer who had not yet completed their families were recruited around the time of diagnosis. Knowledge regarding fertility-related information, decisional conflict, and preferences regarding fertility information and decision making was measured. RESULTS From a potential fertility-related knowledge score of 10, the mean was 5.2 (standard deviation = 2.3; range, 0 to 10). Decreased knowledge was associated with increased decisional conflict about pursuing fertility preserving interventions (odds ratio [OR] = 0.57; 95% CI, 0.44 to 0.73; P < .001). Thirty-one percent of women reported that they would consider undertaking in vitro fertilization (IVF) as a method to conserve their fertility, whereas 38% were uncertain. Consideration of IVF was not related to whether subjects were in a committed relationship (OR = 1.20; P = .716) or a definite desire for more children (OR = 1.54; P = .513). CONCLUSION Around diagnosis, many young patients with breast cancer have low levels of knowledge about fertility issues. Further, low knowledge is associated with increased decisional conflict, which is likely to undermine the quality of decision making. These findings suggest that targeted and timely fertility information may reduce decisional conflict and increase informed choice. Neither relationship status nor firm plans regarding future children reliably predict desire to pursue fertility preservation.

A systematic review of psychological interventions for adolescents and young adults living with chronic illness.

OBJECTIVE There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. METHODS Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. RESULTS Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. CONCLUSIONS Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.

Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer

Background:Fertility is a priority for many young women with breast cancer. Women need to be informed about interventions to retain fertility before chemotherapy so as to make good quality decisions. This study aimed to prospectively evaluate the efficacy of a fertility-related decision aid (DA).Methods:A total of 120 newly diagnosed early-stage breast cancer patients from 19 Australian oncology clinics, aged 18–40 years and desired future fertility, were assessed on decisional conflict, knowledge, decision regret, and satisfaction about fertility-related treatment decisions. These were measured at baseline, 1 and 12 months, and were examined using linear mixed effects models.Results:Compared with usual care, women who received the DA had reduced decisional conflict (β=−1.51; 95%CI: −2.54 to 0.48; P=0.004) and improved knowledge (β=0.09; 95%CI: 0.01–0.16; P=0.02), after adjusting for education, desire for children and baseline uncertainty. The DA was associated with reduced decisional regret at 1 year (β=−3.73; 95%CI: −7.12 to −0.35; P=0.031), after adjusting for education. Women who received the DA were more satisfied with the information received on the impact of cancer treatment on fertility (P<0.001), fertility options (P=0.005), and rated it more helpful (P=0.002), than those who received standard care.Conclusion:These findings support widespread use of this DA shortly after diagnosis (before chemotherapy) among younger breast cancer patients who have not completed their families.

The Acceptability, Feasibility, and Efficacy (Phase I/II Study) of the OVERcome (Olive Oil, Vaginal Exercise, and MoisturizeR) Intervention to Improve Dyspareunia and Alleviate Sexual Problems in Women with Breast Cancer

INTRODUCTION Almost half of breast cancer survivors experience chronic sexual problems. Despite the negative effects of dyspareunia on physical and overall quality of life, sexual dysfunction remains underreported and undertreated in clinical practice. This is likely due to the paucity of evidence-based interventions to improve sexual functioning. AIM The study aims to prospectively evaluate the acceptability, feasibility, and efficacy of a novel intervention (Olive Oil, Vaginal Exercise, and MoisturizeR [OVERcome]) to improve sexual problems following breast cancer treatment. MAIN OUTCOME MEASURES Dyspareunia, sexual functioning, quality of life, distress, and pelvic floor muscles (PFMs) functioning were evaluated. METHODS Twenty-five women with dyspareunia were instructed to perform pelvic floor muscle (PFM) relaxation exercises twice/day to prevent/manage PFM overactivity, apply a polycarbophil-based vaginal moisturizer three times/week to alleviate vaginal dryness, use olive oil as a lubricant during intercourse, and complete a weekly compliance diary. PFM relaxation training was administered by a physiotherapist at weeks 0 and 4, with follow-up at weeks 12 and 26. At each visit, women completed validated self-report questionnaires and the physiotherapist recorded objective measures of PFM functioning. RESULTS OVERcome resulted in significant improvements in dyspareunia, sexual function, and quality of life over time (all P<0.001). PFM relaxation training was reported to be effective (P≤0.001). Maximum benefits were observed at week 12. Most women rated PFM relaxation exercises (92%), vaginal moisturizer (88%), and olive oil (73%) as helpful, indicating that the intervention was acceptable. Unexpectedly, six cases (11%) of vaginal stenosis were noted during initial screening. CONCLUSIONS This novel intervention is acceptable to patients with demonstrated efficacy in improving dyspareunia and sexual function following breast cancer. Delivery of the OVERcome intervention appears feasible in a clinical setting, providing a potential treatment for this important clinical issue. The unexpected number of observed cases of stenosis further highlights the underreporting of sexual problems in this population, deserving further exploration.

Getting to the Point: What Women Newly Diagnosed With Breast Cancer Want to Know About Treatment-Focused Genetic Testing

PURPOSE/OBJECTIVES To identify young womens information preferences regarding treatment-focused genetic testing (TFGT) and to develop and evaluate a novel educational resource. RESEARCH APPROACH Qualitative interview study and pilot testing of a novel resource. SETTING Two familial cancer services and one outpatient oncology clinic in Sydney and Melbourne, Australia. PARTICIPANTS 26 women with breast cancer aged 50 years and younger who either previously had TFGT (n = 14) or had a diagnosis of breast cancer within the previous 6-12 months. METHODOLOGIC APPROACH Participants were asked about their views of TFGT in semistructured interviews. A brief pamphlet on TFGT then was developed and pilot tested with 17 of the 26 women. MAIN RESEARCH VARIABLES Womens attitudes and preferences with regard to timing, mode of delivery, and amount and format of information regarding TFGT were explored. FINDINGS Most women wanted to be informed about TFGT at or around the time of their cancer diagnosis via a face-to-face consultation. No clear preference existed for which type of healthcare professional should provide information on TFGT. Brief written information about TFGT was viewed as important supporting material. The educational resource developed was well received. CONCLUSIONS The potential for more widespread TFGT in the future indicates a need for patient educational materials that enable women to make informed choices about TFGT. This pilot study has provided timely initial evidence on the efficacy of a brief written resource in preparing women for decision making about TFGT. INTERPRETATION The resource developed in this study will assist oncology nurses to make important genetic risk information available to women newly diagnosed with breast cancer at a stressful time.

Development and pilot testing of a fertility decision aid for young women diagnosed with early breast cancer.

To the Editor: Breast cancer is the most frequently diagnosed cancer in women of reproductive age. Most women will be offered adjuvant chemotherapy, which increases the risk of infertility and early menopause in up to 70% of women aged £40 (1,2). Many women report that they were not fully informed of these consequences (3), yet rate the information about fertility and the potential effects of treatment as extremely important (4). There may be interventions available before chemotherapy that may improve the chances of having future children. Consideration of these interventions and the personal, medical, and legal impact is complex (5). Decision aids (DAs) are a wellestablished method of providing information and facilitating evidence-based and personalized treatment choices (4,6). We developed a DA that contains a summary of fertility options (Fig. 1), a discussion of breast cancer and female fertility and a series of values clarification exercises (7); these list the advantages and disadvantages of each treatment option and women are asked to rate each treatment option as an overall ‘‘leaning’’ towards or against each option. The DA was pilot-tested with women diagnosed with early breast cancer between 6 months and 5 years prior, at two major Sydney hospitals. The women were aged 18–40 years (inclusive) and premenopausal at diagnosis with no history of metastatic disease. Thirty women were approached. Seventeen women (57%) completed the questionnaire, one declined participation, one was ineligible, and seven (23%) did either not complete the questionnaire or were not contactable. Data were gathered via a 44item questionnaire. The demographic and treatment characteristics of participants are outlined in Table 1. Desire for (more) children currently and at diagnosis was assessed as was incidence and duration of amenorrhea (Table 2). Most participants reported having read the DA thoroughly and reported the amount of information (88%) and length (94%) were ‘‘about right’’. All reported that the booklet was clearly presented, informative, easy to read, and useful. All women also reported being satisfied or very satisfied with what they felt was ‘‘very’’ or ‘‘quite’’ balanced information. The DA would have been ‘‘very’’ or ‘‘quite’’ relevant for 94% of participants, and 44% and 31% reported it would have been ‘‘very helpful’’ in reaching a decision about fertility and cancer treatment decisions, respectively. Eighty-eight percent indicated that they would recommend the booklet to others in the same situation. Women reported that the booklet made them feel ‘‘a little’’ (53%), or ‘‘quite a bit sad or upset’’ (29%). They indicated that the booklet highlighted the potential loss of fertility, raised concerns about the low success of fertility treatments and a diminished ability to breastfeed, and decreased hope for a successful natural conception. Participants felt their knowledge had improved ‘‘a lot’’ or ‘‘quite a bit’’ with respect to the fertility options available (81%); the pros (75%), and cons (9%) of fertility treatment options; the impact of different cancer treatments on fertility (63%); and the impact of different fertility treatments on cancer treatment (38%), the family (38%), and the future outcome of the disease (44%). The biggest perceived improvement in understanding was on the different fertility options available to women with early breast cancer. Participants reported feeling ‘‘somewhat’’ (19%), ‘‘a little’’ (38%) or ‘‘quite a bit’’ (13%) ‘‘worried or concerned’’ by reading the booklet, while 31% reported being ‘‘not at all worried or concerned.’’ Address correspondence and reprint requests to: Ms Michelle Peate, Psychosocial Research Group, Department of Medical Oncology, Level 3, Dickinson Building, Prince of Wales Hospital, Randwick, NSW 2031, Australia, or e-mail: m.peate@unsw.edu.au The study was funded by The Cancer Council, NSW (Project Grant: RG06-13).

How should we discuss genetic testing with women newly diagnosed with breast cancer? Design and implementation of a randomized controlled trial of two models of delivering education about treatment-focused genetic testing to younger women newly diagnosed with breast cancer

BackgroundGermline BRCA1 and BRCA2 mutation testing offered shortly after a breast cancer diagnosis to inform women’s treatment choices - treatment-focused genetic testing ‘TFGT’ - has entered clinical practice in specialist centers and is likely to be soon commonplace in acute breast cancer management, especially for younger women. Yet the optimal way to deliver information about TFGT to younger women newly diagnosed with breast cancer is not known, particularly for those who were not suspected of having a hereditary breast cancer syndrome prior to their cancer diagnosis. Also, little is known about the behavioral and psychosocial impact or cost effectiveness of educating patients about TFGT. This trial aims to examine the impact and efficiency of two models of educating younger women newly diagnosed with breast cancer about genetic testing in order to provide evidence for a safe and effective future clinical pathway for this service.Design/methodsIn this non-inferiority randomized controlled trial, 140 women newly diagnosed with breast cancer (aged less than 50 years) are being recruited from nine cancer centers in Australia. Eligible women with either a significant family history of breast and/or ovarian cancer or with other high risk features suggestive of a mutation detection rate of > 10% are invited by their surgeon prior to mastectomy or radiotherapy. After completing the first questionnaire, participants are randomized to receive either: (a) an educational pamphlet about genetic testing (intervention) or (b) a genetic counseling appointment at a family cancer center (standard care). Each participant is offered genetic testing for germline BRCA mutations. Decision-related and psychosocial outcomes are assessed over 12 months and include decisional conflict (primary outcome);uptake of bilateral mastectomy and/or risk-reducing salpingo-oophorectomy; cancer-specific- and general distress; family involvement in decision making; and decision regret. A process-oriented retrospective online survey will examine health professionals’ attitudes toward TFGT; a health economic analysis will determine the cost effectiveness of the intervention.DiscussionThis trial will provide crucial information about the impact, efficiency and cost effectiveness of an educational pamphlet designed to inform younger women newly diagnosed with breast cancer about genetic testing. Issues regarding implementation of the trial are discussed.Trial registrationThe study is registered with the Australian and New Zealand Clinical Trials Group (Registration no: ACTRN12610000502033)

Clinician Provision of Oncofertility Support in Cancer Patients of a Reproductive Age: A systematic review

The emerging discipline of oncofertility advocates for the timely provision of fertility information and referral for fertility preservation to all cancer patients of reproductive age (<45 years). A systematic review was undertaken on the clinician provision of oncofertility support to determine whether cancer patients are having their support needs adequately met by staff.