Psychosocial issues involved in living with a cancer family history

Patients who have been diagnosed with a cancer genetic condition have already faced several challenges leading up to the diagnosis. They may have already experienced the loss of several close family members or have been diagnosed with cancer themselves. They may have experienced difficulty in deciding whether to have a genetic test and in telling family members, friends and partners about the possibility of an inherited condition.

After being diagnosed with a cancer genetic condition there are a mixed range of emotions that patients encounter—ranging from numbness, anxiety and guilt to grief and uncertainty, some patients experience acceptance and hope as they move through the process.

The diagnosis of a genetic risk of cancer for some individuals is a traumatic event which can challenge fundamental beliefs about life, themselves and their future, and leave them feeling numb, overwhelmed and powerless. It can also raise huge decisions about risk management. For some it can also lead to information about risks for a variety of other cancers that they had not anticipated.

Understandably, many patients report a strong rise in cancer anxiety in the days and weeks following a genetic diagnosis and a strong sense of uncertainty about the future and their life expectancy. Some patients report a sense that the genetic diagnosis is synonymous with a cancer diagnosis or a feeling that they are a ‘ticking time bomb’. This can manifest itself in panic attacks, intrusive thoughts, worries about death and illness, preoccupation with a foreshortened future and hypervigilance about bodily symptoms and sensations. Some patients report a sense of disengagement, loss of motivation and hopelessness and an inability to move on and to plan for the future. Research on large samples of patients supports this; for example, Watson et al. (2004) found that cancer worry increased in the month following a positive BRCA1/2 genetic test result.

Themes of loss and unresolved grief are common in people at high risk of cancer, due to the many potential causes of loss, for example losing parents at a young age, loss of health security or of multiple family members (Hopwood et al., 1998). Processing the loss is especially difficult when there may be other ongoing issues such as immediate health concerns or dealing with young children.

A large proportion of patients experience feelings of guilt relating to the possibility of passing the mutation on to their children. There may also be guilt regarding the negative consequences of risk management strategies for partners and children or about informing family members.

Health-related problems can leave patients feeling out of control and with a sense of increased vulnerability, which may lead to low self-esteem and an inability to cope with day to day problems (Burns, 2005). Some individuals may feel that their concerns are unique to themselves and/or may hold a sense of shame about their condition which can lead to difficulty in talking about their situation.

What and how to tell children about the genetic condition can be a maj or issue for patients who find the prospect of talking to their children about the genetic diagnosis difficult and distressing, particularly as a parent’s first instinct is to protect their child. There may be difficulties in knowing what or how to communicate to children, and a sense that disclosing any information may raise children’s anxieties to uncontrollable levels. Providing information, checking understanding and explaining and managing the emotional feelings that arise are integral to helping children cope with genetic risk information (Metcalfe et al., 2008).

Patients with a diagnosis of cancer who are undergoing genetic testing often experience multiple challenges such as accepting the diagnosis, coping with the side effects of treatment, maintaining independence and activity, adjusting to loss and change, seeking support and understanding medical information.

Having a genetic test in the midst of treatment might be seen as an extra burden for patients (Ardern-Jones et al., 2005). However, other studies have found no difference in distress between cancer patients who are found to have a breast cancer-predisposing gene mutation and those in whom no mutation is identified (Croyle et al., 1997). Some patients cite the benefit that genetic knowledge can inform their cancer management.

As patients adjust to the genetic diagnosis, some report a sense of relief at discovering an answer to why so many family members and/or themselves have developed cancer. Many patients report that difficult feelings start to improve as they come to terms with the diagnosis and begin to make a plan for risk management. This is related to feeling empowered by the options for risk management which might not have been available had they not tested positive for the mutation.

These issues are not exhaustive or mutually exclusive, rather they are a set of interrelated challenges to be considered within the person’s familial, cultural and spiritual circumstances. As with any challenges, the psychological issues will vary according to many different factors, such as age, experience of cancer within the family, previous psychological issues and/or stage of diagnosis.

 
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