Experiences of men with breast cancer: an exploratory focus group study

Management and care of men with breast cancer is based on that developed for women. Our study reports that men have specific issues regarding certain aspects of their breast cancer experience, including diagnosis, disclosure, support and gender-specific information, and offers suggestions for improved patient care.     

Determinants of chronic fatigue in disease-free breast cancer patients: a cross-sectional study.

BACKGROUND: Quality of life after cancer treatment becomes more important as the number of long-term survivors increases. This study aimed to investigate complaints of fatigue after treatment for breast cancer. PATIENTS AND METHODS: The study patients were 150 women who had finished curative treatment for breast cancer by a mean of 29 months before commencement of this study. Measurements included computerised questionnaires and a daily Self-Observation List. RESULTS: Thirty-eight per cent of the sample were severely fatigued, compared with 11% in a matched sample of women without a history of cancer. No association was found between fatigue and former treatment. The 'severely fatigued disease-free breast cancer patient' scored more 'problematic' on psychological well-being, functional impairment, sleep disturbance, physical activity, social support, neuropsychological and social functioning compared with the 'non-severely fatigued disease-free breast cancer patient'. Furthermore, the severely fatigued patients had a lower sense of control with respect to their fatigue complaints and stronger breast cancer- and psychologically-related attributions with regard to the causes of fatigue compared with the non-severely fatigued patients. Regression analyses indicated that sleep disturbance, physical activity and causal attributions contributed significantly to the subjective experience of fatigue. CONCLUSIONS: Severe fatigue is a problem for almost 40% of the sample of breast cancer survivors. Severe fatigue is related to physical, psychological, social, cognitive and behavioural factors.     

Welsh women's comments about breast problems and the care given: a qualitative study in the community

The aim of this study was to undertake a systematic analysis, using qualitative software, of the free text comments from a postal survey exploring women's experiences of breast symptoms, their expectations of treatment, knowledge of breast cancer risk factors and perceptions of risk, in 34 group general practices in South Wales. The 959 women who returned the questionnaire, out of 1126 (response rate 85%), comprised 497 women who consulted their general practitioner (GP) with a new breast symptom during the baseline data collection period and 462 controls who had not. When the survey was conducted the researchers did not know whether these women had cancer or had previously been treated for it. One-third (33.1%) of those returning the survey ( n  = 318) wrote comments. Compared to the rest, they were significantly more likely to have consulted their GP for a new breast symptom and to have stayed on at school and/or gone on to more education or training. The majority wrote about their own experience of breast symptoms and/or the care received in primary and secondary settings. The general tone was factual and when evaluation took place positive comments were more frequent than negative ones. Nothing suggested that the respondents had been upset or made more anxious by the preceding questions on such a potentially sensitive topic. Free text comments gathered in surveys can provide valuable data if systematically analysed. Doctors, particularly GPs, can be reassured that more women in this community sample who expressed an opinion on care were positive. The negative comments, however, highlight issues that still need to be addressed in therapeutic relationships.     

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Addressing psychosocial and quality of life needs is central to provision of excellent care for people with advanced cancer. This study tested a brief nurse-delivered intervention to address the needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Australia. One hundred and five women with advanced breast cancer were recruited and randomised to receive the intervention or usual care, then asked to complete the European Organisation of Research and Treatment of Quality of life Q-C30 version (2.0) (EORTC Q-C30) (version 2) and Supportive Care Needs Survey (SCNS) at 1 month and 3 months postrecruitment. No significant differences were detected between intervention and usual care groups in the SCNS or the EORTC Q-C30 subscale scores. However, when the groups were divided into high needs (score of above 50) and low baseline needs (score of 50 or below) for each SCNS subscale, a significant difference between intervention and usual care groups was found in the psychological/emotional subscale among women with high baseline needs. In conclusions, this study demonstrated that a face-to-face session and follow-up phone call with a breast care nurse significantly reduced the psychological and emotional needs of those with high initial needs. There was no evidence of the intervention influencing the quality of life; or perceived needs of women with low initial psychological/emotional needs or perceived needs in other domains. Possibly, the intervention was not sufficiently intense to achieve an effect.     

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.     

Impact of breast cancer diagnosis and treatment on women's sexuality: a survey of Japanese patients

Objective: Research on the impact of breast cancer on Asian women's sexual lives is extremely scarce. This study investigated the sexual changes experienced by breast cancer patients in Japan following surgery, and their sexuality‐related information needs. Methods: An anonymous, cross‐sectional survey of breast cancer out‐patients was conducted in 2005. Data from 85 subjects, who were without recurrence and reported being sexually active pre‐surgery, were analyzed. Results: Subjects were mainly in their 40's and 50's, and the median time since surgery was 43 months. Seventy‐three (85.9%) had resumed sex after surgery with the median time being 3.5 months after surgery. Among 73 who resumed sex, 43 reported that the frequency of sex decreased, and 72 reported at least one sexually related change. The multiple logistic regression analysis revealed that those who had perceived the sexual relationship with their partner important before surgery (OR, 6.705; 95%CI, 1.320–34.051; p = 0.022) were more likely to maintain the same frequency of sex as before surgery. Perceived changes in respondents' sexual relationship did not necessarily result in deterioration of the couple's overall relationship. Regarding sexuality‐related information needs, respondents wished to have information on treatment‐induced sexual changes as well as sexual and general inter‐couple communication strategies. Conclusion: This research revealed that breast cancer patients in Japan experience various sexual problems following breast cancer treatment. Sexuality‐related information should be provided to all patients, regardless of patients age or type of surgery, as a part of routine treatment information giving. Copyright © 2007 John Wiley & Sons, Ltd.     

Information needs of patients with cancer: results from a large study in UK cancer centres

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adaptation of Cassileth's Information Needs questionnaire from a heterogeneous sample of 2331 patients. Results showed that 87% (2027) wanted all possible information, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or treatment aims but did show an effect of age and sex. The few 58/440 (13.2%) patients who stated that in general they preferred to leave disclosure of details up to the doctor, tended to be older patients more than 70 years of age (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they still wanted to know certain specific details. In comparison to men women preferred to know the specific name of the illness (chi square = 4.9, df = 1, P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1, P< 0.004). The results from this very large sample provide conclusive evidence that the vast majority of patients with cancer want a great deal of specific information concerning their illness and treatment. Failure to disclose such information on the grounds that significant numbers of patients prefer not to know is untenable.     

Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer

A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.     

The experiences,needs and concerns of younger women with breast cancer: a meta‐ethnography

Objective: This meta‐ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer. Methods: Using a method called ‘reciprocal translation’ we developed a conceptual model to reflect the local and social contexts, issues, processes, needs and concerns of importance in this literature. Findings: Key findings relate to the particular point in the life‐course at which young women with breast cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of recurrence, feeling ‘out of sync’ and altered embodied subjectivity. Young women with breast cancer use three processes to integrate the changes that cancer brings, namely, balancing, normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling and spiritual support. Areas of reproduction, fertility and sexuality were also of particular concern. The included papers have methodological limitations that impact on our findings, such as opportunistic data analyses, lack of theoretical frameworks and limited reference to socio‐cultural factors. Conclusion: The conceptual model developed as a result of this meta‐ethnography provides a basis for practitioners to address these young women's concerns more adequately and comprehensively. Copyright © 2010 John Wiley & Sons, Ltd.     

Information needs of cancer patients and survivors regarding diet,exercise and weight management: a qualitative study

While advanced cancer is often associated with weight loss, curative cancer treatment is often associated with weight gain. Weight gain during treatment may be associated with greater risk of cancer recurrence and development of lifestyle diseases. Currently, limited resources are available to cancer patients focussed on weight control. This study assessed the information needs of patients undergoing curative chemotherapy regarding diet, exercise and weight management for the purpose of developing weight management resources. Focus groups were held with oncology practitioners, patients and survivors to determine current information provision and needs. Focus groups highlighted a perception that information provision regarding diet, exercise and weight management is insufficient and no routine assessment of weight occurs during chemotherapy. Barriers to information provision described included lack of resources and time, and practitioners' uncertainty regarding appropriate messages to provide. Patients wanted more information regarding diet, exercise and weight during treatment time. The findings of this study suggest an increase in provision of diet, exercise and weight management information is needed. This information should be evidence‐based and delivered at an appropriate time by the preferred health care professional. It would also be beneficial to implement protocols regarding assessment of weight during treatment.     

Choices in cancer treatment: a qualitative study of the older women's (>70 years) perspective

Purpose: Primary endocrine therapy (PET) is the treatment of primary, operable breast cancer with drugs, such as tamoxifen, rather than surgery. It is in widespread use in the UK with 40% of women over 70 years old being treated in this way. PET is associated with inferior rates of local control compared with the standard surgical therapies, but there is no difference in overall survival. There has been no published research regarding the attitudes of older women concerning these two alternative approaches to treatment; what may influence their treatment choice or their experience of either treatment modality. This study aimed to address these questions. Method: In‐depth qualitative interviews were undertaken to explore the views of a group of 21 purposively selected older women (>70 years old), who had been treated by PET or surgery for breast cancer. The interviews were transcribed verbatim and analysed using Framework Analysis. Results: Both surgery and PET were well tolerated and had high satisfaction ratings from most women. This was the case even for those who had complications following surgery or needed a change of management in the PET group. Older women expressed no age‐specific fears for operative procedures. The women were passive information seekers and relied heavily on ‘expert’ advice in making their treatment choices. Neither social support or age were factors in their decision‐making. Their main concern was to ensure that their quality of life and independence remained unaffected. Conclusion: Older women have no strong preference for either treatment option but are concerned that the treatment is effective and causes minimal disruption to their quality of life and independence. This study suggests that medical consultations may need to be adapted to reflect the passive acceptance of ‘expert’ advice in the majority of women in this age group. Copyright © 2007 John Wiley & Sons, Ltd.     

The Living with Cancer Education Programme. I. Development of an Australian education and support programme for cancer patients and their family and friends

After a diagnosis of cancer, patients and their families and friends experience a significant need for information about the illness, treatment and prognosis, as well as support. Structured education and support group-based programmes play a major role in meeting these needs. Following a needs assessment in 1985, the Anti-Cancer Council of Victoria (ACCV), Australia, initiated development of the Living With Cancer Education Programme (LWCEP), a structured 8-week group programme providing education and support for people with cancer and their families and friends. This paper provides an historical overview of the LWCEP, as well as an outline of the programme aims, structure, content and delivery. Recent developments and future directions are also discussed. These include adaptation of the programme for individuals with advanced or recurrent cancer, modification of the programme structure and revision of the evaluation methodology.