Allison Werner-Lin, PhD, LCSW is an Associate Professor at the University of Pennsylvania's School of Social Policy and Practice Senior Advisor to the Clinical Genetics Branch of the National Cancer Institute, and a Licensed Clinical Social Worker in the State of New York. Dr. Werner-Lin's research addresses the intersection of genomic discovery and family life. Her work is among the first to explore the psychosocial challenges unique to women and men of reproductive age who carry a genetic mutation that confers elevated cancer risk.

Families living with pathogenic BRCA variants often ask for guidance in supporting their young adult children to live well, make sound decisions about their health care, and maintain their overall wellbeing. Parents often experience a variety of feelings about their child’s BRCA status, including guilt for having “passed” the genetic variant to their child. These feelings may wax and wane as the child ages into adulthood. These feelings may also complicate conversations with adult children about how they are managing their health and well-being. It’s important to remember that conversations about an adult child’s BRCA status happen in the context of the parent’s ongoing relationship with that adult child as well as all the changes young adults commonly experience — considering higher education and job prospects, moving out of the family home, establishing intimate relationships with friends and partners, and considering whether and/or how to become parents. In families with inherited cancer syndromes, these decisions are often inseparable from experiences of cancer risk, family caregiving, and loss. Also, every family has unique levels of comfort with discussing emotional distress and physical health, depending on the family’s cultural background, religious beliefs, experiences with cancer diagnoses and caregiving, and evolving family dynamics.

To answer the following questions, Dr. Werner-Lin draws upon nearly twenty years of research on the experiences of young adults with BRCA and other inherited cancer risk variants as well as her mental health practice as an oncology social worker specializing in children and families affected by cancer.

How can help I my adult child who is struggling emotionally with their own BRCA status?

Watching a child struggle at any age is fraught for parents. We want our children to be happy and healthy. When our children struggle, we often struggle, too. Many parents try to manage their own distress by being as helpful as possible to our adult child (whether or not our adult child views our actions as helpful!). Here are a few steps that may help parents identify ways they can help their adult children navigate emotional distress

Distinguish your adult child’s emotional distress from your own. Parent distress may ebb and flow in intensity differently from their adult child, so attuning to ourselves can help us identify the source of our distress and seek appropriate support for ourselves. This approach also helps keep interactions with our adult children focused on their needs rather than our own.

Find a quiet time to check in. Parents may see their adult child’s behavior as evidence of worry or distress. This is part of how our brains work to make sense of the world — we interpret what we see through our own lenses, our own experiences. Before you step in to provide help, consider a quiet, private “check-in” with your adult child to see how they’re doing. You may choose to share what you’ve observed that tells you there are struggling. Gently ask whether your own interpretations are correct. If your child tells you they are, indeed, struggling with their BRCA mutation status, ask if they’d like to share their concerns with you now or at a time in the future that is good for them. Sometimes your child may need time to gather thoughts, and that’s alright. If you suspect your child withholds sharing emotional distress to be sure they aren’t burdening you, you may decide to name that suspicion and invite your child to share with you while promising to let them know if you become overwhelmed.

Ask, don’t assume. Parents often have specific ideas about what might be helpful to provide their adult child that are different from what the adult child would find helpful to receive. I encourage you to ask your adult child whether you can be helpful and how. Some young adults may prefer action-focused help — laundry, child care, attending appointments together. Other young adults may prefer emotion-focused help — talking through options, listening to their fears, seeking our pleasurable distractions. Both are meaningful ways to support your children and to strengthen your relationship.

How can I help my adult child manage anxiety associated with their BRCA status?

Distress and anxiety are two separate emotions, though they often look the same. Distress is a normal response to a challenging experience. We feel distress in many ways, including sadness, frustration, and worry, and at many different levels of intensity. The terms anxiety and worry are often used interchangeably in the context of health and well-being since both are connected to apprehension about a real or anticipated event. Anxiety is different because it is often marked by a rapid onset, long-lasting, hard to manage set of mental and physical sensations that impact our ability to carry out everyday tasks. If you suspect your adult child is struggling with anxiety, they may be in need of mental health counseling to develop strategies for managing symptoms and signs commonly experienced as a result of anxiety.

Some popular literature talks about “scan-xiety” — a name given to the experience of intense worry leading up to cancer screening that is then released once results are in, no evidence of cancer is found, and adults may resume normal activities of daily life. This experience is common for people with genetic cancer risk and for cancer survivors, too, because we may feel the possibility of a diagnosis as a looming threat. It’s easy to feel alone in these moments, especially for young adults whose peers are not worried about the possibility of a life-altering illness. If your adult child is experiencing distress, you may consider the following:

Schedule scans together. Many families I’ve worked with schedule routine risk management visits together. This reduces isolation and builds in support from loved ones who understand what the group is going through. Some families pair medical visits with a special event — a meal, a movie, a visit to a favorite neighborhood or museum. This balances negative anticipation associated with the medical visit with excitement about the events scheduled afterwards. You may offer to attend visits with your adult child at any point, whether or not you also have a BRCA mutation!

Keep probing to a minimum. Often, in our efforts to support adult children, we add stress by asking deeply personal or triggering questions. Consider asking, “How can I be helpful to you right now?” This question frames your effort as a single event and may support your child to identify a specific chore or task that seems reasonable to ask of you. The more open ended version, “How can I help you?” may be overwhelmingly open-ended if your child is struggling with anxiety. Allowing your adult child privacy is also important. Sometimes sending a meal requires less energy for them than inviting them to join you for a meal.

How to support an adult child making decisions about their health care?

Decisions about our bodies, including how we care for our body and how we use our body (or not) to have children, are among the most sacred decisions we make. These decisions are deeply personal and join our priorities for ourselves with medical advice, and our values, dreams, and fears. For some young adults, decisions about screening and surgical risk reduction may be at odds with decisions about other critical life decisions, such as the desire for a typical dating or sexual relationship or the desire for biological children. For example, some young women prioritize screening and surgical risk reduction over having, or being able to nurse, biological children. For others, the desire to have a biological child may supersede the drive towards risk reduction. Conflict can arise in couples and families when these priorities are not aligned, or when they are understood differently across generational gaps. When families have little emotional space to engage in discussion of high-impact, emotionally-charged aspects of living with a BRCA mutation these conversations may become harder.

A few considerations:

Recognize all the players. Decisions about health care and family formation impact many people in a family and social system, and they are rarely made in isolation. Your adult child may consult trusted adults in their family and social worlds, including you, their siblings and cousins, friends, members of online communities, and most often, their romantic partners. This process can generate many distinct perspectives, informed by quite different experiences with healthcare systems, cancer or cancer risk, and family illness. Parents may struggle to connect with the perspectives of their adult child’s partner who has not experienced the family’s history of cancer and loss, finding these views short-sighted or self-focused. Consider talking to your child and their romantic partners together and apart to learn about their focus and to share your concerns.

Keep an open mind. Making life-long decisions about cancer screening, surgical risk-reduction, and family formation require time. These decisions are important and they often also feel urgent. Yet, young adults often have some time to make decisions that carry permanency on their own time frame. As young people make decisions, they are likely collecting information and guidance from doctors, genetic counselors, mental health providers, and from the internet. They are likely also asking input and seeking support from friends, siblings or cousins, and their romantic partners. This means young adults are sorting through various recommendations, data points, and perspectives while trying to solidify one they can safely and confidently act on. You may help your adult child by gathering and sorting through the various forms of information together, generating a list of questions for health and mental health providers, and seeking answers together. The hard part is getting on board with a plan that differs from what you hoped for. Respecting their ability to make the decision, and the decision they make, is important for preserving the relationship.

Unconditional love and support. At the end of the day, your adult child will make decisions you do not agree with. This does not mean they do not care for you, value your perspective, or need your support. Rather, even decisions made quickly are often treacherous to navigate. Your children will never be too old to hear that you love them, and that you will support them, no matter what. Families express this love in so many beautiful and diverse ways. Tell your adult child how proud you are of the ways they weighed all the information and pursued a course of action that was right for them.

Supporting parents through guilt and grief.

Parents of children who have a cancer risk mutation often feel a mess of emotions about the possibility their child might develop a life-threatening illness. This includes guilt at having “passed on” the mutation, frustration, resentment about your adult child’s decisions regarding their care, and relief at every clear scan. Many of these feelings motivate us to act; to support our children by providing guidance or resources, to collect and distribute information about cancer prevention, and to check-in on our adult child’s screening activities. It’s important to remember that, while these actions are potentially quite helpful for your adult child, they primarily serve to help parents manage our own guilt and grief. Considering ways to manage these feelings within our own networks, and outside our relationships with our adult children, may enable parents to stay focused on their adult child’s needs, encourage open communication, and remain invited to participate in their care.

Since the roller coaster of living with a BRCA mutation can be exhausting, even if you are on the sidelines, you may benefit from seeking out support for yourself. Just saying thoughts and feelings out loud can help alleviate some of the pain we feel for our children. Members of your informal social and family networks may provide wonderful support because these individuals know you well, understand your priorities and fears, and share your history. This support is often a great place to start when you feel you can share your thoughts freely without being judged.

At times, you may need more structured support from a mental health provider. Deciding to see a therapist is a deeply personal experience. Consider looking for a setting where the provider has expertise with cancer and, if possible, genetic risk. The most important facet of this kind of care, however, is not their expertise but rather the relationship you develop with the therapist. Choose one you feel comfortable with; they can help facilitate coping while you help them learn about BRCA. Many people choose to attend support groups where participants have shared experience. In this setting you may learn strategies other parents have used to successfully manage guilt while also maintaining a close and connected relationship with their adult child. A nice middle ground can be found in online support communities where chat rooms, blogs, and discussion forums permit writing about and reading about personal experiences of others like you. Reading these stories can help you feel understood and have your perspective validated by people who have faced similar challenges. For medical questions, always ask a trusted healthcare provider.