Susan Pendlebury

Communicating With Realism and Hope: Incurable Cancer Patients' Views on the Disclosure of Prognosis

PURPOSE To identify preferences for the process of prognostic discussion among patients with incurable metastatic cancer and variables associated with those preferences. PATIENTS AND METHODS One hundred twenty-six (58%) of 218 patients invited onto the study participated. Eligible patients were the consecutive metastatic cancer patients of 30 oncologists, who were diagnosed within 6 weeks to 6 months before recruitment, over 18 years of age, and without known mental illness. Patients completed a postal survey measuring patient preferences for the manner of delivery of prognostic information, including how doctors might instill hope. RESULTS Ninety-eight percent of patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. Doctor behaviors rated the most hope giving included offering the most up to date treatment (90%), appearing to know all there is to know about the patients cancer (87%), and saying that pain will be controlled (87%). The majority of patients indicated that the doctor appearing to be nervous or uncomfortable (91%), giving the prognosis to the family first (87%), or using euphemisms (82%) would not facilitate hope. Factor analysis revealed six general styles and three hope factors; the most strongly endorsed styles were realism and individualized care and the expert/positive/collaborative approach. A range of demographic, psychological, and disease factors were associated with preferred general and hope-giving styles, including anxiety, information-seeking behavior, expected survival, and age. CONCLUSION The majority of patients preferred a realistic and individualized approach from the cancer specialist and detailed information when discussing prognosis.

Cancer Patient Preferences for Communication of Prognosis in the Metastatic Setting

PURPOSE To identify preferences for and predictors of prognostic information among patients with incurable metastatic cancer. PATIENTS AND METHODS One hundred twenty-six metastatic cancer patients seeing 30 oncologists at 12 outpatient clinics in New South Wales, Australia, participated in the study. Patients were diagnosed with incurable metastatic disease within 6 weeks to 6 months of recruitment. Patients completed a survey eliciting their preferences for prognostic information, including type, quantity, mode, and timing of presentation; anxiety and depression levels; and information and involvement preferences. RESULTS More than 95% of patients wanted information about side effects, symptoms, and treatment options. The majority wanted to know longest survival time with treatment (85%), 5-year survival rates (80%), and average survival (81%). Words and numbers were preferred over pie charts or graphs. Fifty-nine percent (59%) wanted to discuss expected survival when first diagnosed with metastatic disease. Thirty-eight percent and 44% wanted to negotiate when expected survival and dying, respectively, were discussed. Patients with higher depression scores were more likely to want to know shortest time to live without treatment (P =.047) and average survival (P =.049). Lower depression levels were significantly associated with never wanting to discuss expected survival (P =.03). Patients with an expected survival of years were more likely to want to discuss life expectancy when first diagnosed with metastases (P =.02). CONCLUSION Most metastatic cancer patients want detailed prognostic information but prefer to negotiate the extent, format, and timing of the information they receive from their oncologists.

Breast cancer survivors’ supportive care needs 2–10 years after diagnosis

Goals of the workA significant proportion of breast cancer patients experience psychosocial morbidity after treatment, although their longer-term outcomes and supportive care service needs have not been comprehensively documented. The aim of this study was to identify longer-term outcomes and supportive care needs in disease-free breast cancer survivors.Materials and methodsOne hundred seventeen patients who had been diagnosed with breast cancer 2–10 years earlier completed questionnaires to assess psychosocial outcomes including supportive care needs, psychological distress, and quality of life (QoL).Main resultsQoL and depression scores were consistent with community rates although anxiety scores were higher. Approximately two thirds of survivors reported at least one unmet need, most frequently concerning existential survivorship issues, thereby highlighting the unique needs of survivors. Years since diagnosis was not correlated with need levels. Survivors classified as clinically anxious reported over three times as many unmet needs and survivors classified as depressed reported over two and a half times as many unmet needs. Positive outcomes were frequently reported.ConclusionsThe findings have direct clinical relevance: irrespective of years since diagnosis, comprehensive and extended supportive care services are required to identify breast cancer survivors in need of supportive care interventions and remediate high levels of anxiety.

Fertility- and Menopause-Related Information Needs of Younger Women With a Diagnosis of Early Breast Cancer

PURPOSE The use of chemotherapy and endocrine therapies in the treatment of premenopausal women carries with it reproductive and gynecologic implications that young women may find distressing and discordant with plans for childbearing. This multicenter study aimed to investigate fertility- and menopause-related information needs among young women with a diagnosis of early-stage breast cancer. PATIENTS AND METHODS Two hundred twenty-eight women with a diagnosis of early-stage breast cancer who were aged 40 years or younger at diagnosis and who were 6 to 60 months after diagnosis were entered onto the trial. Participants completed a mailed self-report questionnaire that included a purposely designed fertility- and menopause-related information needs survey and standardized measures of distress, anxiety, quality of life, menopausal symptoms, and information-seeking style. RESULTS Seventy-one percent of participants discussed fertility-related issues with a health professional as part of their breast cancer treatment, and 86% discussed menopause-related issues. Consultation with a fertility or menopause specialist was the most preferred method of obtaining this information. Receiving fertility-related information was rated as being significantly more important than receiving menopause-related information at time of diagnosis (P < .001) and at treatment decision making (P = .058). Receiving menopause-related information was rated as being significantly more important than receiving fertility-related information during adjuvant treatment (P < .05), at completion of adjuvant treatment (P < .001), and during follow-up (P < .001). Common questions, sources of information, and correlates of perceived importance were identified. CONCLUSION The results of this study suggest that younger women have unmet needs for fertility- and menopause-related information and provide preliminary empirical data to guide the development of better fertility- and menopause-related patient education materials for younger women with a diagnosis of early breast cancer.

Further insights into the natural history and management of primary cutaneous neuroendocrine (Merkel cell) carcinoma

PURPOSE Primary cutaneous neuroendocrine (Merkel cell) carcinoma is a rare neoplasm with aggressive behavior but potential for response to radiotherapy and chemotherapy. Optimal treatment regimens are evolving based on reports of case series and a growing understanding of the natural history. METHODS AND MATERIALS A retrospective analysis of 34 cases treated at two Australian Institutions over 13 years is presented, focusing on clinical features and response to therapy. RESULTS The aggressive nature of this neoplasm is confirmed by the local recurrence rate of 22% following surgical excision, the development of regional node metastases in 76%, and of distant metastases in 70%. Overall median survival was 24 months with 65% of patients succumbing to metastatic disease. An association with B cell malignancies and immunosuppressive therapy is noted, with these patients having a poorer outcome, and one spontaneous remission was observed. Radiation therapy produced responses in 21 of 30 measurable sites (11 complete, 10 partial), and in 11 sites irradiated prophylactically there was only one infield relapse (9%). Responses to chemotherapy were observed in 8 of 20 applications (40%), particularly carboplatin and etoposide given in the setting of regional node disease. CONCLUSION In this poor prognosis tumor, further investigation of adjuvant radiotherapy and chemotherapy is warranted, as responsiveness of recurrent disease is confirmed. Immunological factors appear important in the natural history, and their manipulation may offer additional therapeutic options.

Radiotherapy results in early stage low grade nodal non-Hodgkin's lymphoma.

This is a retrospective review of stages I and II low grade nodal non-Hodgkins lymphoma (NHL) seen at the Royal Marsden Hospital and treated with radiotherapy alone. From January 1970 to December 1989, 58 patients were treated. The Ann Arbor staging system was modified to subdivide stage II into localised and extensive disease, with localised disease representing no more than two contiguous regions. There were 40 stage I patients and 18 stage II patients (eight localised and 10 extensive). Volume of the radiotherapy was involved field only in 30 patients and extended fields in 28 patients. The median dose was 40 Gy in 20 fractions. The pattern of relapse was assessed as being systemic or within the standard volume. Survival and progression-free survival (PFS) were calculated. Prognostic variables of age, histology, stage and radiotherapy volume were analysed by multivariate analysis. The 5- and 10-year PFS for the total group were 59 and 43%, and corresponding OS figures were 93 and 79%. Age less than 60 years was a predictor of improved survival but not for PFS and we found no significance in histology, stage or extent of radiotherapy field for the other variables. All relapses occurred with disease outside the original volume, with three patients also relapsing in-field. Treatment of this disease produced an OS at 10 years of 79%. The plateau on the PFS plot suggested that some patients are cured. Young age was the only prognostic factor found for survival. Relapse is most frequently outside the treated volume. Our current treatment policy for stage I and II low grade NHL is involved field radiotherapy to a dose of 35 Gy in 20 fraction over 4 weeks.

Sarcomas followig radiation therapy for breast cancer: A report of three cases and a review of the literature

Purpose: First to describe clinical and pathologic features of sarcomas arising after radiation therapy for breast cancer and to report three cases of sarcoma arising 7, 15, and 20 years following radiation therapy for breast cancer. Second, to review the literature on this treatment complication. Methods and Materials: Medline literature search. Results: The most frequent histology is osteosarcoma and bone is affected more commonly than soft tissue at a median latency of 11 years. The scapula is the most frequently affected bone. The most frequently affected soft tissue site is now the conserved breast with a median latency of 5.5 years. The aetiologic factors relating to these sarcomas are not fully defined with factors of beam energy, radiation dose, chemotherapy and regional edema being inconsistently reported. Conclusion: The frequency of radiation-induced sarcoma at 10 years of follow-up is approximately 0.2%. This is an overestimate by an unknown factor because of the description of sarcomas arising metachromously in breast cancer patients, in nonirradiated areas

Assessment of Unmet Needs Among Survivors of Breast Cancer

Abstract Published literature on survivors of breast cancer suggests that a small subset of survivors will develop moderate-to-severe psychopathology. The current study aimed to develop and pilot a needs-assessment questionnaire specifically for survivors of the disease. An initial qualitative phase generated items for inclusion in a “Survivors Module” needs-assessment instrument. In the second phase, 95 survivors in remission were asked to complete the Survivors Module as well as measures of depression and anxiety, menopausal symptoms, and quality of life. Two weeks later, they completed the Survivors Module again to establish test-retest reliability. Initial pilot testing of the Survivors Module suggests that the module is a valid and reliable instrument, although further validation and analysis of its psychometric properties using a larger sample would be warranted. A large minority of survivors were found to have many unmet psychosocial needs in a number of areas, particularly in the domain of needs regarding information and medical communication. Unmet needs for help in coping with breast cancer also were prevalent.

Pectoral stretching program for women undergoing radiotherapy for breast cancer

Surgery and radiotherapy commonly cause adverse musculoskeletal problems, particularly loss of strength and range of motion, in the upper quadrant of breast cancer patients. Few well-designed studies have investigated whether these impairments can be prevented. Stretching is an effective technique for increasing range of motion, hence the aim of this study was to investigate whether a stretching program reduced acute musculoskeletal impairments in patients undergoing radiotherapy for breast cancer. Sixty-four women were recruited prior to commencement of radiotherapy following breast cancer surgery. Participants were randomised to either a control or stretch group. Participants in both groups were reviewed by the physical therapist on a weekly basis for approximately 6 weeks, and were given general information about skin care and lymphedema. The control group received no advice about exercise. The stretch group received instruction on low-load, prolonged pectoral stretches, which were to be performed daily and were checked at weekly visits. Shoulder range of motion, strength, arm circumference, and quality of life measurements were taken prior to, and at completion of radiotherapy, and at 7 months after radiotherapy. There was no difference in any outcome between groups. Breast symptoms increased for both groups during radiotherapy, without loss of strength or range of movement. The incidence of lymphedema during the study was low for both groups and did not differ between groups. The pectoral stretching program did not influence the outcomes measured because the symptoms reported by patients were not a consequence of contracture.

Extracorporeal irradiation for malignant bone tumors

PURPOSE Extracorporeal irradiation (ECI) has been used selectively in the management of primary malignant bone tumors since 1996. We report our techniques for ECI and the short-term oncologic and orthopedic outcomes. METHODS AND MATERIALS Sixteen patients with primary malignant bone tumors were treated with ECI from 1996 to 2000. The median age was 14 years. The histologic diagnoses were Ewings sarcoma (11), osteosarcoma (4) and chondrosarcoma (1). The treated sites were femur (7), tibia (4), humerus (2), ilium (2), and sacrum (1). Following induction chemotherapy in Ewings sarcomas and osteosarcoma, en bloc resection of the tumor and tumor-bearing bone was performed. A single dose of 50 Gy was delivered to the bone extracorporeally using either a linear accelerator (9 cases) or a blood product irradiator (7 cases). The orthopedic outcome was recorded using a standard functional scale. RESULTS At a median follow-up of 19.5 months, there were no cases of local recurrence or graft failure. One patient required amputation due to chronic osteomyelitis. For the 10 patients with follow-up greater than 18 months, the functional outcomes were graded good to excellent. CONCLUSION The short-term oncologic and orthopedic results are encouraging and suggest that ECI provides a good alternative for reconstruction in limb conservative surgery in selected patients. This technique should only be used in a multidisciplinary setting, where careful follow-up is available to assess the long-term outcomes.