Over the last 30 years, October – National Breast Cancer Awareness Month – has sparked an annual nationwide conversation about breast cancer. In addition to messages of prevention, early detection and awareness, the rhetoric of this conversation tends to focus on survivorship and “beating” cancer.
While these themes have their value and place, one aspect of the conversation is notably absent: the mental health of the women currently living with the disease.
As a counseling intern in an oncology center, I regularly sit with women who have just received the diagnosis they feared most. The mental and emotional anguish they face enormously complicates their physical struggle, yet these concerns are often overlooked or under-addressed by the current system of care.
Take, for example, “Lily.”
I remember meeting Lily for the first time, less than 24 hours after her cancer diagnosis. She was tearful and unmoored, and her questions started cascading as soon as the door was shut: How am I ever going to make it through the treatments? What is going to happen to us financially if I can’t work? How can I be strong for my adult children? What if this is my last Christmas?
The next week, Lily returned to session calmer, with pink ribbons dangling from her ears. She was determined, she announced, to “beat this thing.” Positive thinking, her faith and family would be her armor, and the well wishes, prayers, and casseroles of friends, her phalanx.
As the weeks went on however, Lily’s resolve began to fade. The financial stress and the treatments were wearing her down, and the calls and notes had stopped coming. Lily worried about burdening her newly adult children and her husband with her worries. Friends would tell her how “strong” she was, but their well-meaning comments only made her feel more alone.
Lily had moved beyond casseroles. What she needed was a safe space, outside of her everyday life where she could be a human, not a hero. She needed a place to process her raw fears about life and death, a place to cry, question, and reflect. She needed a place where she could give name to her experience and write her own narrative about cancer. Rather than more resources to “fight,” Lily needed help to heal.
Lily is not alone.
In 2015, roughly 231,840 women will receive a breast cancer diagnosis. One English study found that nearly half of women with early breast cancer experienced depression, anxiety, or both in the year after diagnosis, and close to 25 percent continued to experience symptoms beyond the one year mark. Further studies have gone on to show that depression in particular is largely misunderstood and undertreated among breast cancer patients.
In addition, research finds that women already experience depression at roughly twice the rate of men. An estimated one in eight women will undergo a period of clinical depression in her lifetime, but fewer than half of these women will ever seek care. Moreover, barriers to mental health care, such as the desire to be self-sufficient, poor access to affordable care, stigma, and other environmental barriers, have a tendency to become exacerbated by the mental, emotional, social, and financial strain of a cancer diagnosis.
One way in which breast cancer advocates could improve the lives of patients like Lily is to encourage the funding of comprehensive care programs that include a licensed mental health professional as part of every patient’s treatment team, thus providing in-house access to individual and group mental health care.
Offering mental health services as a routine part of a center’s continuum of care – in the same way that nutritional counseling or social work services are offered – could work to destigmatize the need to see a clinician. In-house care could also help reach patients who may need care but would not otherwise seek it out on their own. Moreover, removing logistical barriers to treatment – including the often daunting prospect of locating a clinician in the first place – makes services more attainable, especially for patients who are limited in their mobility and financial resources.
Oncology patients spend countless hours of their lives in cancer centers, with much of this time spent waiting or in between treatments. With a therapist on hand, this time could be better spent addressing mental health concerns and ameliorating patient distress.
Furthermore, coordinated mental health care allows caregivers to remain caregivers, rather than become “therapists.” Programs that offer mental health services as part of their basic cancer treatment protocol should also look into offering mental health services to caregivers and loved ones, including children, thereby improving the overall social support for patients and their families.
Coordinating mental and physical care already has proven outcomes in terms of increased patient compliance and reduction in over-all health-care costs. For example, the University of Washington’s IMPACT program has had impressive results with its collaborative care model for patients living with depression and a chronic illness. Patients living with Stage 4 breast cancer would certainly benefit from this collaborative care model, which also aligns with the Affordable Care Act’s emphasis on mental health parity and patient-centered care.
Over the last 30 years, Breast Cancer Awareness Month has made incredible strides in focusing public attention on the disease. The next step should be to ensure that patients receive not just the physical care that they need but the mental health support they deserve as well.