This perspective is written by Nancy M. Gregory, MBA, CFE, CCEP, a cancer survivor, TCF volunteer, and community member.
Despite the acceleration in cancer treatment innovation, one area of cancer care does not seem to be progressing – mental health services for oncology patients, particularly those with rare cancers or hard-to-treat cancers. Eight years after my first Acute myeloid leukemia (AML) diagnosis, it still seems uncanny that I was expected to endure the treatment without a mental health provider on my medical team.
In my experience, cancer is treated in isolation, with little regard for the mind-body connection and the enormous influence that one’s state of mind, ridden with fear, anxiety, and catastrophizing can have on a person’s ability to fight with and overcome an invader. This inexplicable standard of care is no doubt partly rooted in the fact that mental health is still a taboo subject. In a society where we are expected to “buck up” and “pull ourselves up by our boot straps” anything less is perceived as weakness. Further, with fast-moving cancers such as acute leukemias, the primary concern lies with starting disease treatment immediately.
Being treated for AML is akin to being incarcerated – which exacts an enormous psychological toll. Due to infection concerns, patients must stay isolated in private, air-filtered rooms for the entirety of an anticipated 32-44-day initial hospital stay. On occasion, they may be allowed to pace back and forth along the tiny corridor that lines the other rooms in the cancer pod while wearing an N95 mask and non-latex gloves. Realistically, time in the “prison yard,” is rare because reactions to the “7+3”, 24-hour a day high-dose chemotherapy render patients too weak and sick to leave their beds, let alone their rooms, making them captives.
As a patient’s immune system is destroyed by the chemotherapy, darkness seems to engulf the mind. Personally, I felt as though I was physically drowning, but could not reach the surface. Panic consumed me. When patients emerge from that part of the nightmare, there is no mental health care provider with whom to triage the experience, just an oncology nurse.
Once the immune system collapses from chemo, there is the perpetual wait for patient blood counts to sufficiently recover, to enable them to return home for a month-long house arrest before returning to the hospital for three to four more week-long hospital stints for more chemotherapy. The post-induction wait for blood counts to re-populate is agonizing. There is the inherent fear that those counts will not recover, or will not recover timely.
There was ONE licensed social worker (LICSW) on the leukemia, lymphoma, and stem cell transplant floors to service all patients. There were no other mental health advocates on staff for in-patients. Despite the daily traumas patients were enduring, mental health needs were largely ignored and under resourced from start to finish over an approximate 6–9-month period. Such needs were instead treated with pharmaceuticals, in the form of Iorazepam or other addictive benzodiazepines.
Meanwhile, so many other stressful feelings overwhelm cancer patients during extended hospital stays: guilt about having the disease and imposing on family/friends; isolation; loneliness; loss of dignity, independence, and both personal identity (hair loss) and professional identity (career loss); boredom; hopelessness about the future; and sheer anger. Yet often, these overwhelming emotions are not confronted at the outset of treatment, during treatment, or beyond.
Then, there is the “financial toxicity” of blood cancer. Patients cannot work while undergoing treatment if an in-person presence is required. Without nationalized healthcare, even insured patients often face sizable medical bills for life-saving treatment. The enormity of co-insurance costs can easily destroy a person’s finances, a nagging worry that can impede treatment progress or prognosis.
The brutality of blood cancer treatment can also cause post-traumatic stress disorder (PTSD). Within two years, my AML relapsed, requiring conditioning chemotherapy treatment prior to a stem cell transplant, which nearly killed me. I started repeatedly re-living the night where I danced with death – classic PTSD. Mercifully, I was already being treated in-hospital by a mental health professional, treatment that had only materialized because I requested it prior to re-admission.
To the extent that pre-treatment counseling is an option, it should always be offered and an explanation provided as to why it could be useful. Additionally, cancer patients who have undergone prolonged treatment, still have a poor prognosis, or who may be faced with the possibility of recurrent cancer or a secondary cancer, should be set up with ongoing mental health services before completing a treatment regimen. Although my academic medical center did have a team of out-patient LICSWs on staff, I found them to be insufficiently trained to treat cancer patients, geographically distant, and prohibited from offering telehealth services. Following treatment, many patients do not have the financial means to cover the cost of ongoing therapy not covered by insurance, which compromises their path to mental and physical wellness.
Survivorship can be a life-long challenge for many cancer patients. If science puts the cancer in remission or vanquishes it, the risk of recurrence or the possibility of a secondary cancer from chemotherapy remains. After my relapse diagnosis, the original anxieties from my first cancer journey were exacerbated by worry over whether a suitable stem cell donor could be found, whether that donor could be found in time, and whether I could mentally and physically survive an even more strenuous treatment protocol that would take at least another year out of my life.
Additionally, stem cell transplant recipients are usually told that secondary cancers occur between 5-10 years post-transplant. I recently celebrated the fifth anniversary of my transplant. A third cancer journey may be in my future. To all oncology practitioners and patients, please advocate for and insist that psychologists and psychotherapists be members of every cancer team. Patient lives depend on it. There is no point to the science if mental health barriers prevent a patient from continuously exercising the will to survive. There is also no point to surviving if patients are not subsequently thriving.
Mental Health Resources
If you or a loved one are undergoing cancer treatment and experiencing mental health challenges, help is available. Below is a list of mental health resources designed to assist patients and caregivers.
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- Psychosocial Support Options for People with Cancer (American Cancer Society)
- Improving Mental Health Care for People with Cancer (CDC)
- Coping With Mental Health Concerns (Cancer Support Community)