Cancer-Risk Psychology: Helping Patients Live with Genetic Test Results

How many women with hereditary ovarian cancer never had any warning that they might be at risk? The earliest guidelines for identifying people who would benefit from cancer genetic testing, introduced in the late 1990s, were based on tell-tale patterns in family and personal history of cancer. However, a recent well-designed study showed that among ovarian cancer patients found to carry a BRCA1 or BRCA2 mutation, almost half had no family history of ovarian or early breast cancer that might have prompted them to get tested sooner, when they could have taken steps to reduce their risk.

That’s what motivated the National Cancer Institute (NCI) in 2016 to gather experts to discuss tracking down women once treated for ovarian cancer yet never genetically tested. The effort, dubbed “Traceback,” intends to offer these women genetic counseling and testing in retrospect, potentially raising new awareness in high-risk families and new opportunities for risk-reducing treatments. A recap of the two-day workshop was recently published in the Journal of Clinical Oncology (2017 Jul 10;35:2329-2337).

Among the voices of oncologists, geneticists, bioethicists and others at the workshop was Karen Hurley, PhD, a Cleveland Clinic psychologist who specializes in hereditary cancer risk. She advised Traceback participants to consider a range of ethical, legal and social implications, such as:

• What about the women previously diagnosed but now deceased? Would Traceback open old wounds for their families or create legal wrangles about access to medical records?
• What about women who had a recurrence and currently were going through a second round of treatments? Would Traceback add more burden at an inconvenient time?
• What about women who survived ovarian cancer and just wanted to put it behind them? Would Traceback bring up unwanted memories?

At Cleveland Clinic since 2016, Dr. Hurley previously was in private practice in New York City, providing psychotherapy and consultation to hundreds of patients and families with hereditary cancers. She also was on faculty at Memorial Sloan-Kettering Cancer Center, conducting NCI-funded research on psychosocial issues.

In the Q&A below, Dr. Hurley shares insights on Traceback and her work as a cancer-risk psychologist.

Q: How did you come to specialize in hereditary cancer risk?

In the mid-1990s, when I was completing my PhD in clinical psychology, my advisor was collaborating with a medical genetics researcher. Her team was closing in on which mutations were causing breast and ovarian cancer in young patients. Clinical genetic testing wasn’t done back then, but the team offered testing on a research basis so they could collect genetic information from highly affected families.

However, there were other families whose incidence of breast and ovarian cancer was high but not high enough to qualify for testing through the study. Women in those families who’d had a first-degree relative with ovarian cancer were advised to consider having their ovaries removed — even without knowing if they carried a high-risk genetic mutation.

I remember wondering how those women could begin to make a decision like that! Their choice was between enduring surgery and early menopause or relying on inefficient ultrasounds and blood tests to try to catch ovarian cancer before it reached an advanced stage. It was heart-wrenching, especially because they had all watched a mother or sister suffer through treatment or had lost them to the disease.

That topic became my doctoral dissertation. I interviewed more than 80 women about their choice, listening to them thread their way between complex medical information and deep anxiety. After I earned my PhD, I continued to focus on psychosocial research of cancer risk. Later, as genetic testing became more widespread, I began providing clinical consults and psychotherapy for those dealing with high-risk implications.

Q: Describe the type of consults you provide most often.

Most of the time, I consult with patients deciding whether or not to have risk-reducing surgery or those struggling with communicating to their children about inherited risk. Some patients talk about fertility issues, such as the ethical challenges of genetically testing and selecting embryos (a process called preimplantation genetic diagnosis) to avoid passing on a cancer risk mutation to future generations.

In addition to patients with hereditary breast and ovarian cancers, I see many patients with hereditary colorectal syndromes, such as Lynch syndrome and familial adenomatous polyposis, as well as other cancer syndromes.

Q: What are Traceback’s key takeaways for behavioral health providers?

Traceback shows the value of multidisciplinary collaboration when addressing hereditary cancer. Every advance in identifying people at risk, testing for mutations and intervening to reduce risk introduces new wrinkles that translate into challenges at the personal and family levels.

Also, behavioral health providers working with individuals with hereditary cancer risk should cultivate relationships with genetic counselors, who are trained to help maneuver the complexities of family histories, test results and risk-management strategies. Genetic counselors are skilled at presenting risks and benefits in an unbiased way and at supporting patients in making the right decision for themselves.

Q: What do providers need to know about counseling patients with hereditary cancer risk?

Few psychologists specialize in this arena. Those of us who do are mostly affiliated with well-established cancer programs. It’s rare for most behavioral health providers to encounter hereditary cancer risk cases — partly because the genetic mutations are relatively rare. Referring the patient to a subspecialist or seeking peer supervision is always an option.

Providers should help these patients not feel defined by their risk. Patients need to address it, but in a way that accommodates their life goals, such as protecting loved ones and upholding other personal values. That’s individual for each patient.

Twenty years into the cancer genetic revolution, we now have access to testing technology, surgery techniques and evidence-based guidelines that weren’t available to the women grappling with uncertainty in those early research studies. As behavioral health providers, we can support patients in making sure that cancer risk knowledge truly is powerful, not burdensome, by helping them discover how to make their risk-management decisions work for them. When a patient can say how her decision will connect her to the people and goals in her life that matter most, she’s empowered to meet the challenges of living with cancer risk with increased resilience.