Dear Breast Cancer Oncology: Where is the Behavioral Health Care?

Abstract

The journey through breast cancer treatment is often complicated and can involve major surgeries and long-term hormone-altering treatment. Research indicates that nearly 50% of women with early breast cancer experience depression, anxiety, or both in the year after diagnosis. Despite the well-documented mental health impact, access to behavioral health services during breast cancer care varies greatly based on the treatment center. My patient experience highlights missed opportunities, a lack of depression and suicide screening, behavioral health access barriers, and ultimately, the positive impact of adding mental healthcare. A trauma-informed, validating, and compassionate approach to breast cancer care with integration of behavioral health is a critical component to enhancing patient quality of life, improving treatment adherence, and reducing recurrence and mortality.

Introduction

One in 8 women will develop invasive breast cancer at some point in life; 16% are younger than 50 years old at the time of diagnosis. ¹ The journey through treatment is complicated and can involve major surgeries and long-term hormone-altering treatment. Research indicates that nearly 50% of women with early breast cancer experience depression, anxiety, or both in the year after diagnosis.^2‐4 Sleeping disorders occur at an even higher rate of 57%.^3,4 At least half of breast cancer survivors experience sexual dysfunction.^3,4 Despite the well-documented mental health impact, access to behavioral health services during breast cancer care varies greatly.

Patient Perspective

The Trauma of Breast Cancer Diagnosis and Surgery

I learned about my breast cancer diagnosis through an electronic health record conversation between nurses, 1 week after my breast biopsy and postbiopsy hematoma. I quickly entered a disconnected and convoluted breast cancer treatment system. I was tasked with finding a breast surgical oncologist and plastic surgeon, both within a large-scale, urban, academic hospital system, which houses a comprehensive cancer center. I completed a breast magnetic resonance imaging (MRI) and was informed that I would need another biopsy. I declined due to the trauma of the initial biopsy and chose to undergo a unilateral mastectomy. This was an incredibly difficult decision, as it is the amputation of a body part. I was filled with confusion, sadness, and anxiety. Surgery was scheduled quickly, with minimal time to process the diagnosis and loss. I needed to talk to a peer, and I needed behavioral health support. Nothing was offered to me.

The Emotional Toll of Waiting

Post mastectomy, I was informed that the tumor margins were clear, and no malignancy was in the lymph nodes. I was uplifted by this news and shifted my focus toward recovery and navigating the experience of a tissue expander. My breast tissue was sent for genomic testing that would guide the next steps. I felt uneasy about what the results would indicate. This anxiety became pervasive and led to weeks of insomnia and feelings of helplessness. Ultimately, adjuvant chemotherapy was recommended; I felt devastated. My sadness deepened, and I internalized most of it, to not burden friends and family. I was desperate for mental health support. Nothing was offered to me. I researched my options and self-referred myself to the cancer center's psychology–oncology program. Weeks later, someone called and left a message. That moment of motivation had passed, and I didn't return the call.

Navigating Chemotherapy and Survival

I scheduled the soonest available oncology appointment within the hospital system's cancer center, 6 weeks out, and began chemotherapy a week later. The infusion process felt invasive, amplified by the fact that it was adjuvant treatment. I received cyclophosphamide and docetaxel every 3 weeks for 4 cycles for high-grade hormone-receptor-positive breast cancer. ⁵ My tolerability varied, and I remained in survival mode for most of the treatment. I experienced alopecia that included losing all my eyelashes and eyebrows. I cried myself to sleep most nights. There were days I couldn't walk because of the joint pain and days that I was insistent upon running because that was the only thing keeping my mental health intact. Sometimes I could only run a mile, which began to break me emotionally. For over 30 years, I identified as a runner, and it had become my mindfulness practice. Now, my lungs felt heavy, and my body was weak. My mental health continued to deteriorate, and even though I knew I needed behavioral health care, I no longer had the energy to self-advocate. Nothing was offered to me.

The Impact of Menopause on Mental Health

At 45 years old, chemotherapy had not induced menopause, so ovarian suppression was encouraged. This was the hardest part of treatment. I was informed that menopause can be “normal” for someone in their mid-40s. This left me feeling that talking about it would be perceived as complaining. My ability to self-advocate disappeared. The reality is, an abrupt transition into menopause is not normal, and I desperately needed someone to validate this. I began monthly leuprolide injections just weeks after chemotherapy ended. During my first injection, I couldn't stop crying as the nurse prepared it. She appeared perplexed by my response. I genuinely felt that I was losing a part of me that no one wanted to acknowledge: healthy skin and hair (that hadn't even grown back yet), bone health, libido, joint flexibility, and the ability to exercise without pain. I didn't get the years of perimenopause to prepare. I felt hopeless and slipped into a deeper depression. No behavioral health services were offered to me.

Siloed Care and Missed Opportunities

By month 2 of injections and the initiation of tamoxifen, my blood pressure spiked, and I began to experience chest tightness. I lost the skin on my feet, experienced chronic insomnia, and my cognitive abilities declined. As time progressed, I could no longer run because of the joint pain, and I could not work effectively. I knew that maintenance treatment would likely be 10 years, and this reality left me dreading what my life would become. I reached out to my oncology team for guidance and was informed that oncology doesn't treat hypertension. I ended up going to the emergency department. A myocardial infarction and pulmonary embolism were ruled out, but my troponin levels were elevated, so I requested a cardiology referral. No etiology was identified, other than “menopause-induced hypertension.” Everyone seemed so focused on preventing cancer recurrence, but not the long-term impact of medication-induced menopause. My only encouragement was the upcoming reconstruction surgery and a chance to gain some normalcy. This surgery was cancelled due to “possible cardiac concerns,” and a computed tomography (CT) scan also inadvertently found supraventricular node enlargement. I needed a positron emission tomography (PET) scan to rule out metastasis and a cardiac clearance for surgery. I now had 8 different providers, appointments weekly, and was becoming unable to navigate a siloed specialty-focused system. I didn't have the time or energy to add a therapist or psychiatrist to my provider list, I needed integrated behavioral health. Nothing was offered to me; I was never given the opportunity to meet with an oncology social worker.

Self-Advocacy and Mental Health

I finally completed tissue expander exchange and right side mastopexy surgery, 9 months after my original mastectomy. Recovery was challenging, and my mental health further declined. When I looked in the mirror, I saw a disfigured, unrecognizable version of myself. My quality of life became so diminished that I became a shell of myself. I felt isolated from my peers who couldn't relate to this kind of menopause experience. My only validation came from Reddit threads, reading thousands of personal stories of despair. I carried the fears and realities of early menopause and its impact on my mental health. I was losing another part of me. I eventually made the difficult decision to stop the leuprolide. I was aware of my increased recurrence risk without ovarian suppression. Within 3 weeks, my blood pressure plummeted, and I barely had the energy to walk. The depression became overwhelming with thoughts of suicide. I had so many providers, I didn't know who to reach out to for help. I was emotionally and physically broken from breast cancer treatment and navigating the healthcare system. Ultimately, I contacted my oncology team to ask for an antidepressant. They offered to refer me to a psychologist who could start medication. I had finally asked for help and was given a generic, inaccurate response. I remained persistent and contacted my primary care provider, who validated my experience and started an antidepressant. I researched and found a therapist. Both have been invaluable in changing the course of my care. I have slowly climbed out of depression, and my energy and ability to run have returned. My 1-year MRI was malignancy-free, and my oncology appointments are less frequent. This has been the most traumatic experience of my life, and now I am expected to forget the past year, ignore the inevitable recurrence possibility, and return to happiness by living in the moment. How? It is vital that mental health support is a part of this journey.

Practical Recommendations

1. Enhanced oncology clinician training in motivational interviewing and trauma-informed care. Cancer diagnosis, breast cancer treatment, and navigating the healthcare system can be traumatic. They can feel insurmountable if there is additional past emotional, physical, and sexual trauma. Patients who experience trauma need safety, validation, and autonomy through shared decision-making. Motivational interviewing can help clinicians navigate difficult conversations that can have a dramatic impact on treatment outcomes. ⁶

2. Standardize routine depression and suicide screening at breast cancer oncology appointments. ⁷ Depression screenings, such as the Patient Health Questionnaire-9, should be conducted at baseline, surgical oncology and oncology appointments, and repeated every 3 to 6 months during the first year of treatment, and a minimum of annually during maintenance treatment. Ensure that oncology care teams understand the differences between psychology, psychiatry, peer support, and case management, to allow for better integration of these critical services. Behavioral health consultants (eg, Licensed Clinical Social Workers and Psychologists) should be integrated into oncology care and available for same-day consults during clinic and infusion days, with the ability to have warm handoffs to behavioral health services. ⁸ There are at least 5 behavioral health integration opportunities throughout the course of breast cancer care: (1) diagnosis/surgery, (2) chemotherapy/radiation, (3) treatment-induced menopause, (4) recurrence anxiety/recurrence, and (5) end of life. At a minimum, a list of community mental health resources that includes peer support should be verbally discussed with every patient.

3. Uncomplicate a healthcare system that is specialty focused. Insomnia, sexual dysfunction, fatigue, pain, depression, and anxiety have a significant impact on quality of life. ⁹ Tolerability concerns are frequent; it is unrealistic to rely on multiple specialists for ongoing care. The wait to see a psychiatric specialist can be long and lead to increased suicide risk and lost oncology follow-up. Breast cancer oncologists should be trained in initiating first-line antidepressants for depression and vasomotor symptoms of menopause. A psychiatric prescriber embedded within oncology (psychiatrist, psychiatric nurse practitioner, and psychiatric pharmacist) should be available to assist with more challenging cases.

Conclusions

There is a gap in behavioral health services routinely offered within breast cancer care.^7,8,10 My patient perspective is only one of many examples highlighting this deficit. A trauma-informed, validating, and compassionate approach to breast cancer care with integration of behavioral health is a critical component to enhancing patient quality of life and reducing recurrence and mortality.