Talking to family about cancer genes

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Categories: For Potential Participants, [Cancer]

The cancer journey is one few of us wish to go on. Despite best personal efforts to prevent cancer through regular screenings and positive lifestyle choices, cancer can still develop. As our understanding of the disease continues to grow, clear genetic linkages have emerged. Consider BRCA1 and breast cancer – women (and men) who learn they carry a BRCA1 mutation have a significantly higher risk for breast cancer when compare with someone who does not have this mutation.

Being armed with this genetic knowledge is self-empowering – though it is often overwhelming to first learn such news. Increasingly at-home DNA tests lead to people learning about genetic cancer risks they may carry. Expecting to find out one’s ancestry but instead being alerted to a medical concern is troubling. Ultimately, an individual’s knowledge of increased cancer risk can enable the assertion of control, including compliance with screening guidelines and discussion of other proactive measures (i.e., mastectomy).

Once someone possesses new information about their own genetic risk factors, thoughts soon turn to family members who may, or may not, have the same genetic mutation elevating their risk of cancer. Dynamics are different when genetic links are discovered during cancer diagnosis as opposed to in a “non-emergent” situation. In one situation, family members supporting the patient have knowledge around what is happening and being looked at. For others, the news comes more privately.

There is no definitive playbook for how and when to talk with close blood relatives about newly learned genetic insights. Every family is unique and with varying degrees of closeness and openness between its members. For anyone grappling with what to share with relatives about genetic test findings, here are a few things to consider.

First off, give yourself space. Whether you are thinking about coffee with a sibling or an email to a cousin, appreciate it is a hard topic to broach. Plan accordingly for when there is sufficient time and emotional energy. Make sure you are not scheduling difficult conversations on already difficult days. Anticipate that there will be questions and know what you are comfortable with sharing.

Do homework ahead of time. Use the opportunity to make a “Family Tree” update. This will be important for any genetic counseling so data accuracy – age of onset, type, outcome – leads to a more precise risk score. Start with members of ones ‘inner circle’ with the most knowledge about cousins, aunts, uncles in order to outline the familial network and identify gaps of information to be filled in.

Ask for support. Find out what resources are available or recommended by local genetic counselors before agonizing too much about who to share this news with and how. Genetic aspects are increasingly part of the cancer journey and these conversations are happening more frequently – learn from the insights of the experts.

Many cancer related clinical trials look at genetic aspects of the disease to develop more personalized therapies. If you are interested in learning when new cancer-related research opportunities are available, along with occasional news updates, join our patient community today!


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