Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

Network News - Winter/Spring 2010 - Canadian Breast Cancer ... Network News - Winter/Spring 2010 - Canadian Breast Cancer ...

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The Psychobiological Risk and Resilience of Young Families Affected by Maternal Breast Cancer By Melissa A. Vloet, PhD Candidate and Mario Cappelli, PhD, C. Psych. Among Canadian women, breast cancer continues to lead cancer incidence rates. In 2009 alone, 22,700 women were diagnosed with breast cancer. Breast cancer affects women across the lifespan, and has been identified as the most commonly diagnosed cancer in women between the ages of 20 and 49. 1 This specific group of women faces many of the same trials as other women who are negotiating breast cancer diagnoses and treatment options; however, less is known about how this group of younger women copes with their illness. Research groups like ours, located at the Children’s Hospital of Eastern Ontario (CHEO), have taken a special interest in this younger population of breast cancer patients and survivors. Our research has traditionally been focused on identifying how women with breast cancer and young families juggle the competing factors in their lives. In addition, our investigations have also provided insight into how children and adolescents cope with their mothers’ breast cancer diagnoses. The available literature on the occurrence of breast cancer in younger populations suggests that younger groups of women diagnosed with breast cancer differ from their older counterparts in a number of important ways. For instance, this younger cohort of women is more likely to be engaged in parenting activities. To date, the literature on cancer and parenting has identified several important factors that impact the family’s ability to cope with cancer. One of the most important determinants of family well-being appears to be family communication about breast cancer. Researchers studying parental cancer have found that many children and adolescents hold misperceptions about their parents’ cancer. These misperceptions are believed to develop from a lack of information and reassurance within the family and between health care providers and children. 2 3 Investigators have determined that communicating clear and consistent information (in a developmentally appropriate manner) promotes more effective coping in children and adolescents. For instance, children and adolescents who believed they were better informed about their parents’ cancer reported using more adaptive coping strategies to deal with some of the difficult emotions they experienced. 4 One of the common myths about mothers with breast cancer is that their children experience higher rates of anxiety and depression than other kids. However, research has demonstrated that, in general, children and adolescents of mothers with breast cancer actually cope quite well. Certainly, this is good news for families adjusting to breast cancer. Despite this, there is still reason to be concerned about young families coping with breast cancer. Researchers have found that, although most children and adolescents cope well, female adolescents often experience significant struggles related to their mothers’ diagnoses. Compared to all other groups of children and adolescents studied, adolescent daughters report the highest levels of anxious and depressive symptoms when faced with parental breast cancer. 5, 4 In part, this distress is due to role shifts and added familial responsibilities that are commonly experienced by adolescent daughters. Adolescent daughters often report feeling torn between assisting their families and establishing independence (an important developmental task for all adolescents). They also experience Melissa A. Vloet concerns about how the shifts in their family roles will impact their mother-daughter relationships in the long term. 6 Many of the adolescent daughters studied also report concerns related to the disease of breast cancer itself. Personal risk for breast cancer seems to be one of their chief concerns. In some cases, this concern can develop into a maladaptive preoccupation with their own breast health. Evidence indicates that breast cancer diagnosed in women under 50 years of age is more commonly associated with genetic factors. To date, scientists have identified two specific gene alterations associated with an increased risk for breast cancer occurring in BRCA1 and BRCA2. Researchers studying genetic testing for breast cancer have found that if a woman has alterations in BRCA1 and/or BRCA2, there is a 50% chance that her children will inherit the same alteration. Adolescent women who grow up in families where the risk for developing breast cancer is higher are often aware of the hereditary nature of breast cancer and may believe that they are more at risk for developing the illness themselves. Our research group is currently studying how adolescent girls feel about their mother’s breast cancer, familial breast cancer risk, their personal risk for breast cancer, and the communication that occurs within the family concerning breast cancer risk. 28 Network News Winter/Spring 2010

At present, we are recruiting women who have been tested for alterations in BRCA1 and/or BRCA2 and their families to participate in our studies. In our previous research we have demonstrated that mothers’ concerns about an adolescent daughter’s breast cancer risk are particularly important in determining whether or not a mother will undergo genetic testing for the alterations in BRCA1 and BRCA2. Although the process of genetic testing has its own set of advantages and disadvantages for women, it also presents women with an important dilemma. Many women who undergo genetic testing feel confused about how to discuss their results with family members. This struggle can become even more difficult when there are children and adolescents involved. Our preliminary investigations of children’s attitudes concerning genetic screening have indicated that adolescents have a favourable attitude toward genetic technology and that the majority would elect to be screened for BRCA1/2 mutations if given the opportunity. However, less is known about the impact of maternal risk for breast cancer on children because the extent to which adults communicate genetic risk of breast cancer to children is relatively unknown. Dr. Mario Cappelli Limited research suggests that approximately 50% of women who are tested for the BRCA1/2 alterations elect to share their risk estimate results with dependent children under the age of 18. 7 However, the impact this may have on adolescent daughters is unclear at this time. Our current studies are investigating how families communicate about genetic risk for breast cancer and the impact this has on family coping. In addition to working with mothers and adolescent daughters, we are also looking for fathers to participate in our studies. Since breast cancer has traditionally been identified as a women’s health issue, researchers have tended to focus on female participants in their investigations of genetic mutations associated with breast cancer. The role of fathers in the negotiation of genetic risk for breast cancer is currently not well understood. However, indicators suggest that fathers demonstrate a strong desire to assist their daughters’ roles in coping with their risk for breast cancer. Our research group will expand on this knowledge by defining the role that fathers play in daughters’ conceptualization and interpretation of risk for BRCA1/2. This will be an important step in addressing how families cope with genetic risk for breast cancer and developing guidelines to assist health practitioners serving these families. • References 1. Canadian Cancer Steering Committee (2009). Canadian Cancer Statistics, 2009. Toronto: Canadian Cancer Society. 2. Hilton, B.A. & Gustavson, K. (2002). Shielding and being shielded: Children’s perspectives on coping with their mother’s cancer and chemotherapy. Canadian Oncology Nursing Journal, 12, 198-206. 3. Forrest et al. (2006). Breast cancer in the family: Children’s perceptions of their mother’s cancer and initial treatment. BMJ, 332, 998-1003. 4. Huizinga G.A., et al. (2005). Stress response symptoms in adolescent and young adult children of parents diagnosed with cancer. Eur J Cancer. 2005, 2, 288-95. 5. Compas B.E. et al., (1996).When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychol., 3,167-75. 6. Spira, M. and Kenemore, E. (2000) Adolescent daughters of mothers with breast cancer: Impact and implications. Clinical Social Work, 28, 183-194. 7. Tercyak K. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psycho-oncology 10, 336-46. Melissa A. Vloet is a doctoral student in Clinical Psychology at the University of Ottawa. She previously attended the University of Prince Edward Island (UPEI) where she received the institution’s most prestigious entrance award and was recognized as an inaugural Wanda Wyatt Scholar. She graduated from UPEI in 2006 with a Bachelor of Arts, double honours, in English Literature and Psychology. Since moving to Ottawa in 2006 to pursue graduate studies under the supervision of Dr. Mario Cappelli, Ms. Vloet has received a Doctoral Research Award from the Canadian Institute of Health Research and currently participates in their Child Clinician-Scientist Training Program. Her research to date has examined issues surrounding breast cancer diagnosis, parenting, genetic risk, and family communication. Most recently, Ms. Vloet attended the World Health Organization’s Women’s Mental Health Conference in Melbourne, Australia, where she presented some of her research findings to an international audience. Dr. Mario Cappelli is currently the Director of Mental Health Research at the Children’s Hospital of Eastern Ontario (CHEO) and the CHEO RI, a Clinical Professor of Psychology, Adjunct Professor of Psychiatry, Adjunct Professor in the Telfer School of Business and a Member of the Faculty of Graduate and Post- Doctoral Studies at the University of Ottawa. Dr. Cappelli first attended the University of Ottawa, graduating in 1983 in psychology, and then attended Carleton University and obtained his MA (1986) and PhD (1991). Dr. Cappelli completed a pre-doctoral clinical internship at CHEO and obtained further clinical training at the Child and Family Centre, Chedoke- McMaster Hospital, as a post-doctoral fellow. Dr. Cappelli’s areas of expertise are clinical child and health psychology. After completing his PhD, Dr. Cappelli returned to CHEO and has worked in both inpatient and outpatient clinics. In addition to his clinical activities, Dr. Cappelli is involved with teaching and research. Dr. Cappelli’s research foci are in the health service and systems in the area of genetics and mental health. Dr. Cappelli’s research is funded by CIHR, MOHLTC and most recently the RBC Foundation. Network News Winter/Spring 2010 29

The Psychobiological Risk and Resilience of Young<br />

Families Affected by Maternal <strong>Breast</strong> <strong>Cancer</strong><br />

By Melissa A. Vloet, PhD Candidate and Mario Cappelli, PhD, C. Psych.<br />

Among <strong>Canadian</strong> women,<br />

breast cancer continues to lead<br />

cancer incidence rates. In 2009<br />

alone, 22,700 women were diagnosed<br />

with breast cancer. <strong>Breast</strong> cancer<br />

affects women across the lifespan,<br />

and has been identified as the most<br />

commonly diagnosed cancer in women<br />

between the ages of 20 and 49. 1 This<br />

specific group of women faces many<br />

of the same trials as other women<br />

who are negotiating breast cancer<br />

diagnoses and treatment options;<br />

however, less is known about how<br />

this group of younger women copes<br />

with their illness. Research groups<br />

like ours, located at the Children’s<br />

Hospital of Eastern Ontario (CHEO),<br />

have taken a special interest in this<br />

younger population of breast cancer<br />

patients and survivors. Our research<br />

has traditionally been focused on<br />

identifying how women with breast<br />

cancer and young families juggle the<br />

competing factors in their lives. In<br />

addition, our investigations have also<br />

provided insight into how children and<br />

adolescents cope with their mothers’<br />

breast cancer diagnoses.<br />

The available literature on the<br />

occurrence of breast cancer in younger<br />

populations suggests that younger<br />

groups of women diagnosed with<br />

breast cancer differ from their older<br />

counterparts in a number of important<br />

ways. For instance, this younger cohort<br />

of women is more likely to be engaged<br />

in parenting activities. To date, the<br />

literature on cancer and parenting has<br />

identified several important factors<br />

that impact the family’s ability to cope<br />

with cancer. One of the most important<br />

determinants of family well-being<br />

appears to be family communication<br />

about breast cancer. Researchers<br />

studying parental cancer have found<br />

that many children and adolescents<br />

hold misperceptions about their<br />

parents’ cancer. These misperceptions<br />

are believed to develop from a lack of<br />

information and reassurance within<br />

the family and between health care<br />

providers and children. 2 3 Investigators<br />

have determined that communicating<br />

clear and consistent information (in a<br />

developmentally appropriate manner)<br />

promotes more effective coping in<br />

children and adolescents. For instance,<br />

children and adolescents who believed<br />

they were better informed about their<br />

parents’ cancer reported using more<br />

adaptive coping strategies to deal with<br />

some of the difficult emotions they<br />

experienced. 4<br />

One of the common myths about<br />

mothers with breast cancer is that<br />

their children experience higher<br />

rates of anxiety and depression than<br />

other kids. However, research has<br />

demonstrated that, in general, children<br />

and adolescents of mothers with<br />

breast cancer actually cope quite well.<br />

Certainly, this is good news for families<br />

adjusting to breast cancer. Despite this,<br />

there is still reason to be concerned<br />

about young families coping with breast<br />

cancer. Researchers have found that,<br />

although most children and adolescents<br />

cope well, female adolescents often<br />

experience significant struggles related<br />

to their mothers’ diagnoses. Compared<br />

to all other groups of children and<br />

adolescents studied, adolescent<br />

daughters report the highest levels of<br />

anxious and depressive symptoms when<br />

faced with parental breast cancer. 5, 4 In<br />

part, this distress is due to role shifts<br />

and added familial responsibilities<br />

that are commonly experienced by<br />

adolescent daughters.<br />

Adolescent daughters often report<br />

feeling torn between assisting their<br />

families and establishing independence<br />

(an important developmental task for<br />

all adolescents). They also experience<br />

Melissa A. Vloet<br />

concerns about how the shifts in<br />

their family roles will impact their<br />

mother-daughter relationships in the<br />

long term. 6 Many of the adolescent<br />

daughters studied also report concerns<br />

related to the disease of breast cancer<br />

itself. Personal risk for breast cancer<br />

seems to be one of their chief concerns.<br />

In some cases, this concern can develop<br />

into a maladaptive preoccupation with<br />

their own breast health.<br />

Evidence indicates that breast cancer<br />

diagnosed in women under 50 years of<br />

age is more commonly associated with<br />

genetic factors. To date, scientists have<br />

identified two specific gene alterations<br />

associated with an increased risk for<br />

breast cancer occurring in BRCA1<br />

and BRCA2. Researchers studying<br />

genetic testing for breast cancer have<br />

found that if a woman has alterations<br />

in BRCA1 and/or BRCA2, there is<br />

a 50% chance that her children will<br />

inherit the same alteration. Adolescent<br />

women who grow up in families<br />

where the risk for developing breast<br />

cancer is higher are often aware of the<br />

hereditary nature of breast cancer and<br />

may believe that they are more at risk<br />

for developing the illness themselves.<br />

Our research group is currently<br />

studying how adolescent girls feel<br />

about their mother’s breast cancer,<br />

familial breast cancer risk, their<br />

personal risk for breast cancer, and the<br />

communication that occurs within the<br />

family concerning breast cancer risk.<br />

28 <strong>Network</strong> <strong>News</strong> <strong>Winter</strong>/<strong>Spring</strong> <strong>2010</strong>

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