The psychological impact of cancer:
How are you feeling?
Introduction
The medical community has developed guidelines for the medical treatment of hereditary breast and ovarian cancer (HBOC) and the cancer risk associated with it. Despite these guidelines, which can serve as a standard for clinical practice, the affected women and their families face many other challenges associated with an elevated cancer risk. Furthermore, there is too little evidence about the psychological impact of HBOC and about how to best deal with these lifelong challenges. Every person is different and has his or her own way of responding to a stressful situation. Which is why we are reluctant to give precise recommendations for how to handle the mental stresses related to HBOC.
Remember: HBOC and how we deal with it not only has an impact on us, but also on the people around us.
There are many different ways to deal with the challenges associated with HBOC. And some are more helpful than others. Active coping is about finding ways to get information on the one hand and finding ways to deal with negative feelings on the other. All people use some combination of these ways, depending on the situation. Dealing with a stressful situation is not a black-and-white affair; responses can change over time. But avoidance or denial cannot solve the problem. Instead, such responses sustain the uncertainty and can actually exacerbate the psychological stress. When someone avoids or denies the problem, it can also mean that they are not ready to accept valuable support from health care providers and close family members and friends.
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There are many things that doctors and other health care providers can do to help. First of all, they can give you accurate and reliable information. Getting information from trustworthy sources helps reduce uncertainties.
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Make a list of questions that you can ask your various health care providers.
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Go with a family member or a trusted friend to doctors’ visits. Ask them to take notes for you and then go through these notes together afterwards.
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Research ahead of time so you can have enough time to process the information.
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Get additional consultations to clear up any uncertainties.
Psychologists are a very helpful resource. For more information, please see our Resource guide
Anyone who has questions about cancer or topics related to it is welcome to stop by any of the Zurich Cancer League centers, with or without an appointment. There are always nursing specialists on site. You can find more information here.
Do research and take the time to process the information. The fact that genetic alterations (pathogenic variants) are associated with HBOC leads to considerable uncertainty about the likelihood of developing cancer or getting a second cancer diagnosis. Despite evidence-based recommendations, many decisions regarding cancer-risk management depend strongly on the individual circumstances of each woman and her own values. Should I opt for a preventive mastectomy (surgery to remove the mammary glands)? When is the best time to get a prophylactic salpingo-oophorectomy (surgery to remove the ovaries and fallopian tubes)? Therefore, it is not uncommon for many women to experience significant dilemmas when faced with decisions involving irreversible medical interventions that will, by extension, have a lifelong impact. It is also not uncommon for women to have to deal with conflicting opinions about how to best manage their cancer risk. This can result in decision-making conflicts, the feeling of a loss of control, emotional distress and stress.
Finding people you can trust
First steps: Processing the information
Stress and negative feelings
It is completely normal to feel overwhelmed at first: by the news, by the amount and complexity of genetic information on HBOC, by the decisions that will need to be made, by having to deal with cancer risk. Many women experience negative feelings like rage, guilt, or fear of the cancer and fear of death. It is natural to feel uncertainty when it comes to the lifelong challenges cancer brings with it. That includes, for example, how cancer will affect intimate relationships and relationships to other family members, as well as whether it will be possible to resume one’s former social and professional functions.
Try to keep an open mind and act! As a way of coping with negative feelings and the feeling of a loss of control.
First, it helps to acknowledge these negative feelings. You did not choose to inherit a pathogenic variant associated with HBOC, but you can choose how to deal with this stressful situation and negative feelings. Accepting the reality of cancer risk is a very effective coping strategy that can alleviate emotional distress and other negative feelings.
Activities like hiking, yoga and meditation can help reduce stress and build up new strength. Trying something completely new, such as picking up a new sport or hobby, is a good way of focusing your attention on something else.
Seek support from others. Spend time with people who you trust, who support you, and who have a positive outlook on life. Join a self-help group with people who are facing similar challenges. A list of self-help groups can be found here.
You can ask psychologists or cancer therapists for support. They are trained health care providers who can offer professional support in coping with and overcoming these challenges.
Feeling better about yourself: being active helps you deal with the uncertainty of the future, maintain a better outlook on life, relieve tension within your family and even strengthen your bonds to other people.
The role of the family
HBOC can also be a stressful situation for other family members. Cancer and its treatments can affect your intimate relationships. Parents may feel guilty for passing on these pathogenic variants to their children. Other family members might not know what they can do to help. Children present a special situation for people who are potentially at risk for HBOC. Parents may be very unsure about whether they want their children to know about HBOC and the pathogenic variant and when it would be the best time to tell them.
Children generally model their coping style after their parents.
Cancer and HBOC affect each person in the family in ways that may not be obvious or easy to understand. It is also helpful to accept that everybody responds differently to stressful situations and has different ways of coping. But regardless of how each person manages the risk or disease, it is important for families to work together and support one another. Working as a team increases the family support network, which can help foster understanding and reduce tensions within the family.
Trained family therapists or cancer therapists can help the family overcome these challenges and maintain cohesion.
Genetic specialists can help explain the relevant information about genetics and heredity in such a way that your family, including children, can understand it.