Patient and GP experiences of pathways to diagnosis of a second primary cancer: a qualitative study.

BACKGROUND: More people are surviving a first primary cancer and experiencing a second, different cancer. However, little is known about the diagnostic journeys of patients with second primary cancer (SPC). This study explores the views of patients and general practitioners (GPs) on their experiences of pathways to diagnosis of SPC, including the influence of a previous diagnosis of cancer on symptom appraisal, help-seeking and referral decisions. METHODS: Qualitative interviews with patients with a SPC diagnosis and case-linked GP interviews in a Scottish primary care setting. In-depth face to face or telephone interviews were conducted, underpinned by a social constructionist approach. Interviews were transcribed and Braun and Clarke's thematic analysis undertaken. Three analysts from the research team read transcripts and developed the coding framework using QSR NVivo version 10, with input from a fourth researcher. Themes were developed from refined codes and interpreted in the context of existing literature and theory. RESULTS: Interviews were conducted with 23 patients (aged 43-84 years) with a SPC diagnosis, and 7 GPs. Five patient themes were identified: Awareness of SPC, symptom appraisal and help-seeking, pathways to diagnosis, navigating the healthcare system, and impact of SPC. GPs interviews identified: experience and knowledge of SPC and referrals and decision-making. CONCLUSIONS: Insights into the pathway to diagnosis of SPC highlights the need for increased awareness of and vigilance for SPC among patients and healthcare providers (HCPs), and emotional support to manage the psychosocial burden.

Sarcoma as Second Cancer in a Childhood Cancer Survivor: Case Report, Large Population Analysis and Literature Review.

The majority of pediatric patients are cured of their primary cancer with current advanced developments in pediatric cancer therapy. However, survivors often experience long-term complications from therapies for primary cancer. The delayed mortality rate has been decreasing with the effort to reduce the therapeutic exposure of patients with pediatric cancers. Our study investigates the incidence of sarcoma as second cancer in pediatric cancer survivors. We present a 9-year-old male who survived embryonal hepatoblastoma diagnosed at 22 months of age. At 4.5 years of age, he presented with a non-metastatic primitive neuroectodermal tumor (PNET) of the left submandibular area. He has no evidence of recurrence of either cancer for 51 months after finishing all chemotherapy and radiotherapy. We used the Surveillance, Epidemiology, and End Results (SEER) database to identify the current rate of second sarcomas in pediatric cancer survivors. Our literature review and large population analysis emphasize the impact of sarcoma as a second malignancy and provide help to physicians caring for pediatric cancer survivors.

Using cognition to predict the ability to understand medical treatment in brain and metastatic cancer.

OBJECTIVE: To determine if cognition can be used to identify persons with cancer at high risk for the impaired ability to understand treatment decisions. METHODS: The association between understanding treatment decisions and cognition was examined using data from 181 participants across four groups: 67 with brain metastasis, 41 with metastatic cancer that has not spread to the brain, 27 with malignant glioma, and 46 healthy controls. All diagnoses were made by board-certified oncologists and were verified histologically. RESULTS: Results indicated that numerous cognitive functions were associated with the ability to understand treatment decisions in persons with cancer. The following proportion of participants demonstrated impaired understanding of treatment decisions in our three patient groups: approximately 51% malignant glioma, approximately 46% brain metastasis, and approximately 24% metastatic cancer. In a combined brain cancer group, we were able to use cognitive performance to predict the impaired ability to understand treatment decisions. CONCLUSIONS: An impaired ability to understand treatment decisions is prevalent in persons with brain cancer and persons with metastatic cancer. Performance on a brief cognitive battery can be used to help clinicians identify patients at particular risk for impaired medical decision making.

Perceptions of future health and cancer risk in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Survivors of childhood cancer are at significant risk for serious chronic health conditions and subsequent cancers because of their prior treatment exposures. However, little is known about survivors' perceptions of their future health risks. METHODS: This study examined self-reported levels of concern about future health and subsequent cancer in 15,620 adult survivors of childhood cancer (median age, 26 years; median time since diagnosis, 17 years) and 3991 siblings in the Childhood Cancer Survivor Study. The prevalence of concerns was compared between survivors and siblings, and the impact of participant characteristics and treatment exposures on concerns was examined with multivariable modified Poisson regression to estimate relative risks (RRs) and 95% confidence intervals (CIs). RESULTS: A substantial proportion of survivors were not concerned about their future health (31%) or developing cancer (40%). The prevalence of concern in survivors was modestly higher (RR for future health, 1.12; 95% CI, 1.09-1.15) or similar (RR for subsequent cancer, 1.02; 95% CI, 0.99-1.05) in comparison with siblings. Survivors exposed to high doses of radiation (≥20 Gy) were more likely to report concern (RR for future health, 1.13; 95% CI, 1.09-1.16; RR for subsequent cancer, 1.14; 95% CI, 1.10-1.18), but 35% of these high-risk survivors were not concerned about developing cancer, and 24% were not concerned about their future health. CONCLUSIONS: A substantial subgroup of survivors were unconcerned about their future health and subsequent cancer risks, even after exposure to treatments associated with increased risk. These survivors may be less likely to engage in beneficial screening and risk-reduction activities. Cancer 2018. © 2018 American Cancer Society.

Assessing the Effect of Lifetime Contralateral Breast Cancer Risk on the Selection of Contralateral Prophylactic Mastectomy for Unilateral Breast Cancer.

INTRODUCTION: Contralateral prophylactic mastectomy (CPM) rates are rising, with fear implicated as a contributing factor. This study used a contralateral breast cancer (CBC) risk stratification tool to assess whether the selection of CPM is reflective of future CBC risk. PATIENTS AND METHODS: This retrospective study evaluated 404 women with unilateral breast cancer treated with breast conservation, unilateral mastectomy, or bilateral mastectomy within a single multidisciplinary clinic. Women were evaluated by the Manchester risk tool to calculate lifetime CBC risk. Logistic regression analysis was used to evaluate whether CBC risk was associated with CPM, and the clinical rationale for prophylactic mastectomy justification was recorded. RESULTS: Sixty-two percent underwent breast conservation, 18% unilateral mastectomy, and 20% bilateral mastectomy. In the CPM cohort, 36% had > 20% calculated lifetime CBC risk. In the invasive cohort, younger age (odds ratio 2.65, P < .0001) and genetic mutation positivity (odds ratio 35.39, P = .019) independently predicted CPM. Other contributing factors included benign contralateral breast findings (29%) and recommendations against breast conservation due to disease burden (28%). Six percent selected CPM as a result of an unsubstantiated fear regarding breast cancer. CONCLUSION: The majority of women (63%) who selected CPM had < 20% CBC risk. In these lower-risk women selecting CPM, factors increasing reasonable fear dominated surgical choice (81% of this subset).

Exploring Cancer Worry in Adolescent and Young Adult Survivors of Childhood Cancers.

PURPOSE: Adolescent and young adult (AYA) survivors of cancers in childhood experience cancer worry, defined as concerns about cancer-related issues such as relapse and late effects of treatment. Cancer worry is an important determinant of successful transition to long-term follow-up care. The primary aim of this study was to identify patient-, cancer-, and treatment-related factors associated with cancer worry in AYA survivors. A secondary aim was to explore and understand inappropriate cancer worry (e.g., worry of developing a late effect when not at risk) in this population. METHODS: Two hundred and fifty AYA survivors, aged 15­26 years, completed a 6-item Cancer Worry Scale. Selection of factors potentially associated with cancer worry was guided by literature and expert opinion for inclusion in univariable and multivariable regression analyses. RESULTS: Female survivors reported significantly more cancer worry than males did (b=-9.4; 95% CI -14.4 to -4.5; p < 0.001). Survivors treated with the most intensive therapies reported more cancer worry compared with those who received the least intensive therapies (b=-18.5; 95% CI -31.2 to -5.9; p = 0.004). Thirty-one percent of participants had inappropriate worry regarding infertility and/or secondary malignancy. CONCLUSIONS: In AYA survivors, female sex and higher treatment intensity were associated with increased cancer worry. Inappropriate worry was prevalent among survivors and may contribute to unnecessary distress. These findings can help identify survivors who are more likely to worry and support the development of appropriate services to reduce the effect of cancer worry on survivor well-being.

[A path analysis on factors influencing second primary cancer screening practices in stomach, colon, and breast cancer survivors].

PURPOSE: This study was conducted to identify the factors influencing second primary cancer (SPC) screening practice by examining the relationships of physical symptoms, knowledge and attitudes regarding SPC screening, perceived risk, primary cancer type, and demographic factors of cancer survivors. METHODS: Participants were 308 survivors of stomach, colon, or breast cancer recruited from 2 university hospitals in Korea. Data were collected using a questionnaire and analyzed using IBM SPSS 21.0 and AMOS 18.0. RESULTS: The proportion of participants taking all cancer screenings according to national guidelines was 40%. They had moderate knowledge and a relatively positive attitude regarding SPC screening and high cancer risk perception. The participants had taken fewer SPC screenings after than before cancer diagnosis. The factors influencing cancer risk perception were age, physical symptoms, knowledge regarding SPC and primary cancer type (stomach). The factors influencing SPC screening practice were age, gender, economic status, knowledge regarding SPC screening, and primary cancer types (colon). CONCLUSION: It is important for clinical professionals to recognize that survivors of cancer are susceptible to another cancer. Education on SPC screening for these survivors should focus on communicating with and encouraging them to have regular cancer screenings.

Trajectories of social isolation in adult survivors of childhood cancer.

PURPOSE: Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. METHODS: Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. RESULTS: Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. CONCLUSIONS: Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. IMPLICATIONS FOR CANCER SURVIVORS: Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.

Multiple primary cancer survivors have poorer health status and well-being than single primary cancer survivors: a study from the population-based PROFILES registry.

OBJECTIVE: The health status and psychosocial well-being of multiple primary cancer (MPC) survivors are under-researched. METHODS: In total, 3615 survivors identified from the Eindhoven Cancer Registry between 2008 and 2009 were assessed. About one in six survivors had survived MPC (n = 556). All survivors completed questionnaires on health status (SF-36/European Organization of Research and Treatment of Cancer quality of life module), mental health (Hospital Anxiety and Depression Scale) and impact of cancer (Impact of Cancer). RESULTS: Compared with single primary cancer survivors, MPC survivors reported significantly poorer scores on general health and higher symptom scores on diarrhoea and fatigue. Significantly more MPC survivors met the subclinical cut-off score of ≥ 8 points on the Hospital Anxiety and Depression Scale depression subscale (27% vs. 19%, p = 0.0001). MPC survivors also reported significantly greater negative impact of cancer (namely body changes and life interferences) and positive impact of health awareness on their lives. All results were adjusted for age at survey, time since last diagnosis, sex, comorbidity, body mass index and marital status. In secondary analyses, MPC survivors with different primary cancer combinations or time interval between primary cancer diagnoses had comparable health status and psychosocial well-being. CONCLUSION: Multiple primary cancer survivors reported a poorer health status and, in general, experienced a greater negative impact of cancer on their psychosocial well-being than single primary cancer survivors.

Oncologists experience with second primary cancer screening: current practices and barriers and potential solutions.

OBJECTIVES: Screening for second primary cancer (SPC) is one of the key components of cancer survivorship care. The aim of the present study was to explore oncologists' experience with promoting second primary cancer screening. METHODS: Two focus group interviews were conducted with 12 oncologists of diverse backgrounds. Recurrent issues were identified and placed into thematic categories. RESULTS: Most of the oncologists did not consider SPC screening promotion as their responsibility and did not cover it in routine care. All of the study participants had experience with unexpected SPC cases, and they were under emotional tress. There was no systematic manner of providing SPC screening. Oncologists usually prescribe SPC screening in response to patients' requests, and there was no active promotion of SPC screening. Short consultation time, limited knowledge about cancer screening, no established guideline for SPC screening, and disagreement with patients about oncologists' roles were major barriers to its promotion. An institution-based shared care model was suggested as a potential solution for promoting SPC screening given current oncology practices in Korea. CONCLUSION: Oncologists could not effectively deal with the occurrence of SPC, and they were not actively promoting SPC screening. Lack of knowledge, limited health care resources, and no established guidelines were major barriers for promoting SPC screening to cancer survivors. More active involvement of oncologists and a systematic approach such as shared-care models would be necessary for promoting SPC screening considering increasing number of cancer survivors who are vulnerable.

Physical and mental health status of survivors of multiple cancer diagnoses: findings from the National Health Interview Survey.

BACKGROUND: Little research has identified the physical and mental health status of survivors of multiple primary cancer diagnoses. METHODS: By using data from the population-based 2009 National Health Information Survey, 154 survivors of multiple primary cancer diagnoses, 1427 survivors of a single cancer diagnosis, and 25,004 individuals without a history of cancer diagnosis were identified. The multiple cancer group was compared with the single cancer and no cancer groups with regard to physical and mental health status using analysis of covariance and binary logistic regression. RESULTS: Relative to the no cancer group, the multiple cancer group reported significantly poorer mental health status, greater lifetime, recent, and current prevalence of a variety of medical conditions and comorbidities, and more health-related disability. Although observed group differences between the multiple cancer and single cancer groups were less pronounced than those between the multiple cancer and no cancer groups, a consistent pattern was also evident; the multiple cancer group reported significantly poorer status relative to the single cancer group across a range of mental and physical health and illness-related disability indices. CONCLUSIONS: Diagnosis of 2 or more primary cancers (excluding nonmelanoma skin cancers) is associated with increased risk for poorer physical and mental health status over and above that associated with diagnosis of a single primary cancer. Survivors of multiple and single primary cancer diagnoses should be considered as distinct subgroups, and increased attention should be devoted to the unique status and needs of survivors of multiple primary cancer diagnoses.

Life after cancer: living with risk.

BACKGROUND: Recent research shows that cancer survivors are at greater risk of developing cancer than the general population. Although recommended, many cancer survivors receive no regular cancer screening. Cancer survivors' perceptions of their second cancer risk are, in part, suspected to influence their participation in cancer screening. OBJECTIVE: This study was conducted to explore how cancer survivors define and interpret second cancer risk. METHODS: An interpretive descriptive approach was taken whereby semistructured interviews were conducted with 22 cancer survivors (16 women and 6 men) drawn from a provincial cancer registry. The sample ranged in age from 19 to 87 years. The cancer history of the participants varied. Data were analyzed using the constant comparative method of data analysis. RESULTS: The overall theme, "life after cancer-living with risk," described cancer survivors' sense that risk is now a part of their everyday lives. Two themes emerged from the data that speak to how cancer survivors lived with second cancer risk: (1) thinking about second risk and (2) living with risk: a family affair. CONCLUSIONS: Effective risk communication to support the decisions made by cancer survivors with respect to cancer screening is warranted. IMPLICATIONS FOR PRACTICE: Study results provide foundational knowledge about the nature of second cancer risk that may be used to develop and refine standards for survivorship care including how second cancer risk can be best managed.

Surviving childhood cancer. Cure is not enough.

Children who are diagnosed with cancer have a five-year survival rate of nearly 80%, and many live well into adulthood. Because of their disease and treatment exposures, survivors of childhood cancer are at risk for unique long-term health effects. This article reviews some of the more common late effects of childhood cancers and their treatments--endocrine abnormalities, cardiovascular compromise, subsequent neoplasms, and psychosocial issues.

[Communication with palliative care patients: truth and hope--a contradiction?]. / Gespräche mit Palliativpatienten: Wahrheit und Hoffnung--ein Widerspruch?

Especially in western countries an open communication with cancer patients has gained increasing importance in the last years. Balancing between truth and hope in view of bad prognosis presents a special challenge. Oncologists have the responsibility and duty of truthful disclosure. On the other hand they have to accept the patients handling with given information and to respect that sometimes patients do not want to know the whole truth. In this paper the difficulties to prevent hope and the importance of an individualized and empathic care will be discussed on the basis of a case report.

Li-Fraumeni syndrome in a Turkish family.

Li-Fraumeni syndrome (LFS) is one of the familial cancers characterized by different tumors and hereditary TP53 mutations. The adrenocortical carcinoma (ACC) association with acute leukemia is unusual in childhood, even in LFS. The authors here present a family with pR337P mutation in TP53 gene who had a child with acute lymphoblastic leukemia (ALL) and associated adrenocortical carcinoma as a case 1 and his cousin with brain tumor as a case 2. A hereditary TP53 mutation supported the diagnosis of LFS in this family. The patients had many difficulties in treatment strategies and succumbed to death. The availability of a reliable molecular marker to detect the R337P TP53 mutation allows the rapid identification of carriers in families that have a child with ACC. Once identified, carriers could be screened for early detection of ACC by imaging and endocrine studies and should be given psychological support to prevent anxiety for death. Whether early detection of ACC will reduce the mortality in these patients remains to be determined.

The late effects of mantle field radiotherapy: the information and support needs of women survivors of Hodgkin's disease.

PURPOSE: To improve understanding of the information and support needs of women at risk from breast cancer after earlier treatment with mantle field radio therapy for Hodgkin's disease. METHOD: A multiple case study approach presenting the detailed accounts of three participants has been used to represent the issues raised by a wider sub-set of 15 Hodgkin's disease survivors. These women were participants in a larger qualitative study of 50 long term survivors of adolescent cancer. They were interviewed in depth either face to face or via the telephone. Data were analysed using methods of data reduction, display and conclusion drawing, three case studies were then purposively selected to illustrate key themes in the wider data set. KEY RESULTS: Discovering the risk of late effect breast cancer, particularly via the media, caused shock. Reliable information was difficult to locate and the support needs of the women were not met by medical services. The impact of the new risk was exacerbated by the earlier cancer experience. CONCLUSION: Information on the risk of late effects to cancer survivors regarded as trustworthy is not easy to access. When the risk of a treatment related malignancy is identified there must be a reliable way of informing both those at risk and primary health care physicians who then need to take into account the cancer history of the patient and its ongoing effect on their emotional vulnerability.