Mental Health Support for Previvor Women
This article was originally published in The Jewish Link
Many people, especially in our community, have heard of gene mutations that cause hereditary cancers (e.g., BRCA1, BRCA2, Lynch, etc.), but few have heard the term Previvor. A previvor is someone with a genetic mutation who has not yet developed cancer. Because a previvor is not (yet) sick, they often struggle with this status in silence.
In our community, which experiences high rates of BRCA1 and BRCA2, (one in 40 for those of Ashkenazi Jewish descent), it is important for us to recognize and support the unique mental health challenges these individuals experience. As a therapist working with previvors, I want to share some of the challenges they face so that previvors can feel seen and less alone.
The truth is, it’s hard to talk about a previvor without turning the conversation into a medical discussion. Medical discussions are essential, but they rarely address the trauma, anxiety and pain that accompany discovering you are a previvor. The biggest struggle may be the anxiety around developing cancer, but another important component is grieving the life they thought they would have.
The journey of previvorship is often filled with invisible grief, complex emotions and silence from those around them. Previvors struggle with trauma reactions, fear, body image concerns and identity shifts that others cannot understand. This will also depend on each previvor’s treatment options and her stage of life. There is no roadmap and having a genetic mutation comes with so many difficult and unimaginable decisions.
Decision Fatigue
Previvors often struggle with decision fatigue as they grapple with life-changing medical decisions.
One of the biggest, ongoing challenges previvors face is choosing between surveillance or prophylactic surgeries. This means deciding between constant invasive tests and regular medical appointments or removing body parts, such prophylactic double mastectomies and/or prophylactic salpino-oopherectomies (removal of the tubes and ovaries) for those with the BRCA gene.
Surveillance results in escalated levels of anxiety, and many previvors describe their body parts as “ticking time bombs.” Previvors who opt for surveillance also face “scanxiety.” Knowing that their chances of developing cancer are higher makes every scan and appointment anxiety provoking. Thus, many previvors live in fear from one appointment to the next.
Choosing a prophylactic surgery — for example, deciding to amputate one’s breast to potentially ward off cancer — can be an agonizing choice. While some previvors, particularly those who have seen family members go through cancer, will do anything to avoid illness, the procedures are highly invasive and are accompanied by long-term repercussions, including a changed body, reduced fertility and/or early menopause depending on what body parts are removed.
Medical recommendations and the decisions those come with will often differ based on the previvor’s age, risk status as well whether she is looking for a partner, partnered, has children, is hoping to have more children or has completed her family. Previvors also often weigh the impact each available option will have on their family members.
Emotional Impacts
Each situation comes with unique challenges and concerns. Some women struggle to navigate previvorship alone, especially when contemplating what it might mean in terms of a future relationship and family.
Many individuals discover they are carriers when family members are diagnosed with cancer. It can be extremely painful watching a loved one go through cancer knowing you might be next. Yet there is limited opportunity to process one’s status as a previvor when a close family member is in the depths of illness.
When there are multiple previvors within an immediate family it may be difficult for them to support one another as they each navigate previvorship. Moreover, when the previvor is a parent there is added guilt, grief and fear around the thought of having passed the gene on to their children.
The emotional toll of previvorship also manifests as self-esteem issues, body dysmorphia and changes in sexual desire. The removal of one’s breasts, fallopian tubes, and/or ovaries— or the fear of having to do so at a later time — can also challenge one’s identity and impact the previvor’s sexual esteem and confidence as well as her view of her femininity.
Communal Mental Health Support for Previvors
Previvorship is complicated, emotional and overwhelming. The challenges described above only begin to scratch the surface. Now that you have a small glimpse into the challenges faced by previvors, you might be wondering what you can do to be supportive of the previvors in your life. Here are some suggestions based on my work with previvors:
Check in on your previvor friends. See how you can best support them wherever they are in the process.
Don’t make assumptions. Don’t assume you know about the care they need or how they are feeling. Don’t tell them what surgeries you think they may need. We often try to say the “right thing” and it comes out the opposite way. If you don’t know what to say, it is better to just say that.
Don’t provide false assurance. You may have the urge to tell them they will be fine or that there is only a small chance that they will develop cancer. You don’t know that and hearing that from anyone other than a medical professional can invalidate their feelings.
Meet them where they are. If they want to be sad, support them. If they want to make jokes, let them. If they want you to help them gather research on medical advancements, help them. If they don’t want advice, don’t offer it. Recognize that each day might be different.
Remember that they are never done with this diagnosis. Even with preventive surgeries, there is always a risk of certain cancers. This is part of their genetic makeup and that does not go away.
Not everyone’s journey is the same. Everyone’s journey with hereditary cancer looks different — starting from when and how they find out they have this mutation. Be sensitive.
