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people to give this information to other family members who may be at risk for cancer and who may benefit from genetic testing. Having genetic information can pose challenges for many people who may not be close to relatives or those who have relatives living a great geographical distance away. How does one begin to inform these individuals? Should it be a telephone call or a letter? How does one breach the topic of cancer? Individuals may fear that they will cause the relative to become emotional or have challenges in even describing and giving out complex genetic terms or their associated implications. Other challenges include the implications for the relevance of the genetic information for a person’s children. Most parents will want to inform their children that they are eligible for genetic testing at some stage; however, important questions need to be considered: How do I tell my daughter or son? At what age should I inform them? How will they react? How much should I tell them? Should I wait until they are at the age of screening? Understandable concerns include the potential reactions of a child and whether or not he or she will be able to handle the news. Other common concerns include the feeling that one is holding on to information until feeling prepared to disclose it, which can result in a person feeling less open or even feeling a sense that he or she has secret knowledge. Options information follow test results Following the news of the test result, individuals are typically given information on a number of options to consider in managing his or her risk, including the need for multiple screening tests to monitor health (mammograms, ultrasounds, MRIs), and the option of prophylactic surgeries (prophylactic mastectomies or prophylactic oopherectomy). These are very personal decisions, and even within families it is not uncommon for siblings to choose different options. For some women, the recommendation of being followed through high risk screening programs is sufficient and they can manage the associated anxiety that occurs when going for checkups. Other women feel that prophylactic surgery is the best choice for them in managing their cancer risk. The decision-making around these preventive and monitoring options can be challenging and leave a woman feeling unclear and uncertain as to which choice is best for her. While all women clearly want to lower their cancer risk, there is a fundamental difference between making a choice to have surgery when in good health and having surgery once disease is detected. When making these challenging decisions, it is important for women to have opportunities to explore their personal pros and cons, value systems and to gain a clearer understanding about which options seem best suited for them. There can be significant value in working through these decisions with a healthcare professional such as a mental health professional, a nurse, or with her genetic counsellor. Women adjust more optimally to their decisions when they feel as though they were fully informed, had taken the time to consider their options, had opportunities to explore their views, understood the implications and potential results and side effects, and felt ready to make them. Regardless of how well-informed a woman feels, it is important to recognize that along with the challenges around medical decisions, there will be emotional and physical implications that require time and an adjustment period. Again, these reactions are important to recognize as a normal part of the process. Surgeries which alter functioning and physical appearance or sensation will result in changes to body image and feelings about oneself, and can affect self-esteem and require some time to adjust to. Common emotional reactions include feelings of anxiety prior to having surgery, feelings of sadness, loss and a need to mourn the loss of the prior physical self. It takes time for the woman to become familiar with her new sense of self. Women who feel that they are overwhelmed with these emotional reactions or believe that the adjustment period may be taking too long should consider seeking professional help from a counsellor, meeting with other women in similar situations through peer support or support groups, or look for relaxation and meditation techniques to manage stress levels and emotional reactions. The changes that occur as a result of surgeries can also have implications for intimate relationships. Sometimes it is difficult for partners to understand how to assist a woman in her adjustment, or couples may find it challenging to openly discuss their perspectives and fears surrounding the changes or their own personal reactions. For example, women can feel like they have lost their sense of femininity or that they have lost the ability to perform a certain role (e.g. reproductive roles). They may feel “different” or even older. Some find themselves with a lower libido if they have entered into menopause. Most women work successfully through these feelings alone or with their own supports, but health professionals or counsellors can be helpful in assisting women or couples to navigate these emotional challenges. Following their adjustment periods, most women feel satisfied that they made the right decision and benefit through the comfort provided by having a lower risk for cancer as a result of the choice they made. Other challenges around surgery involve discussions with children to inform them that their mother is 24 Network News Winter/Spring 2010
having surgery but is not currently ill. It is important to let children know that she will be okay when she returns from the hospital. The post-surgical recovery period requires discussions and changes in roles and routines at home and in some cases women will not be able to carry or hold young children or perform many physical tasks. These changes require some explanation to the child in an ageappropriate manner while minimizing the potential for the child to become fearful. The use of toys, dolls, and open discussions and preparation before surgery can assist the child to adjust to the changes that occur following surgery and to provide some understanding around the situation while minimizing alarm. These are just a few of the most common reactions and issues that are a part of the genetic testing process and its implications. Adjustment is just a normal part of the process. Reactions can vary but most individuals do adjust over time and they are able to work through these challenges on their own or with friends and family support. Approximately 10-20% of individuals require more emotional support and assistance in working through adjustment issues and coping with the associated stressors, like having surgery, or the reactions that can occur around a genetic test result. Individuals may benefit from talking openly with their healthcare professionals or with their own families and peer supports as they learn to cope with their test results and during the periods when they must weigh personal options. Strategies that can help individuals to gain clarity and cope with and work through these challenges are also useful and can be found through Internet searchers or through genetic testing centres and cancer clinics. Observing the challenges that occur as a result of genetic testing as stressful and requiring an adjustment period allows the individual to regard these reactions as a normal part of the process. Hopefully, such a context will help individuals to ask for help more often, seek out strategies and minimize the opportunity for more distress that can affect one’s quality of life. Services and supportive tools that can be helpful: • Websites • Chat lines; links to meet others in similar situations • Support groups, especially those that address relevant areas of concern, either peer or professionally-led • Decisional aids or tools to assist with medical decision-making (ask your genetic counsellor or support team at your local cancer centre or hospital) • One-on-one counselling with a nurse, mental health professional, genetic counsellor, or family doctor • Meditation techniques • Stress management strategies (yoga, exercise, guided imagery) • Reading materials (Internet based, CD ROMs, books, self-help books, pamphlets) You should consider seeking professional assistance when you have: • Difficulty sleeping • Strong emotional reactions (e.g. grief, sadness, anxiety, crying episodes that last more than a couple of weeks, feeling overwhelmed) • Anger outbursts • Difficulty concentrating • Difficulty carrying out roles at home or work • Extreme feelings of “being alone” • Withdrawal from hobbies, work, friendships • Lack of clarity around a decision, ambivalence in considering options, unable to make a decision • Uncertainty about how to discuss genetic information with offspring or other family members • Challenges when communicating to family members • Difficulties accepting changes in body image or dealing with the impact of surgery • Dr. Mary Jane Esplen is a Clinician- Scientist at the University Health Network, a Professor at the Department of Psychiatry, Faculty of Medicine, University of Toronto, and is the Inaugural Director of the de Souza Institute. She is also a Canadian Institute of Health Research scientist studying the psychosocial impact of genetic testing as well as having cancer. Dr. Esplen received a Ph.D. in psychosomatic medicine from the Institute of Medical Sciences, University of Toronto, and completed a post-doctorate fellowship in cancer genetics at the Samuel Lunenfeld Research Institute in Toronto. She is a therapist and researcher working in psychosocial oncology and teaches at the University of Toronto. She has a strong interest in developing measurement tools and interventions for cancer genetic populations and individuals with cancer. Dr. Esplen is the recent past president of the Canadian Association of Psychosocial Oncology. Network News Winter/Spring 2010 25
Page 1 and 2: Canadian Breast Cancer Network Wint
Page 3 and 4: e part of a remarkable Board of Dir
Page 5 and 6: CBCN Board Members, staff and parti
Page 7 and 8: carry a BRCA mutation. If you would
Page 9 and 10: January 2009 and after several scan
Page 11 and 12: What is BRCA? By Dawna M. Gilchrist
Page 13 and 14: 5. Where possible, and if patient/f
Page 15 and 16: Hormone Therapy After Risk Reducing
Page 17 and 18: Knowledge is Power Interview with J
Page 19 and 20: Informing Women of the Risks and Be
Page 21 and 22: Susan Armel is the senior genetic c
Page 23: BRCA1/2 Testing: Navigating Through
Page 27 and 28: the risk of hereditary cancer. A ri
Page 29 and 30: At present, we are recruiting women
Page 31 and 32: Familial Breast Cancer and No BRCA1
Page 33 and 34: ‘E’ is for Empowered - Are You
Page 35 and 36: Continued from Page 30 Top 10 Thing

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