Diagnosis and treatment of cancer are potential traumatic stressors.[1,2] Others may include but are not limited to interpersonal violence, military combat, natural and man-made disasters, and displacement. In response to the intense fear, helplessness, terror, and uncertainty that traumatic stressors can provoke, post-trauma symptoms (PTS) classically develop in three clusters: re-experiencing, avoidance/numbing, and hyperarousal.
Table 1 highlights PTS that survivors of pediatric and adult cancer may experience. In adolescents and young adults, a sense of biological fragility and foreshortened future, narrowing interests, and living for the day are typical PTS. PTS triggers—cues that recall the trauma—include sensory experiences in the clinical setting, interactions with providers, and cancer-related information. Characteristic PTS can be normative self-protective responses to trauma. Psychopathology, that is, post-traumatic stress disorder (PSTD), is implied when a number of symptoms in each cluster persist beyond 1 month and cause clinically significant distress or impaired function.
Lifetime prevalence of PTSD in the adult population in the US is estimated at 8%. In the general population, those at higher risk for PTSD after a potentially traumatic event are adolescents and young adults; females; and people with previous exposure to trauma, lower levels of social support, or a family history of depression in a first-degree relative.
The National Cancer Institute reports the incidence of full PTSD at 3% to 4% in early-stage patients recently diagnosed to 35% in patients evaluated after treatment. The rate of subsyndromal PTSD-like symptoms (not meeting full diagnostic criteria for PTSD) is higher, from 20% in early-stage cancer patients to 80% in people with recurrent cancer.
DS is a 25-year-old white female diagnosed at age 17 with localized osteosarcoma after a 1-month history of pain in the affected limb. She was enrolled on a childhood cancer clinical trials group protocol that involved several cycles of cisplatin, methotrexate, and adriamycin; tumor resection plus allograft; and further chemotherapy with the same agents. DS completed treatment in 1 year with no significant side effects. She was initially followed by the treating oncologist for recurrence, then transferred to long-term follow-up (LTFU).
DS came to LTFU clinic alone. In the examination room, she was flushed and sweating, which she attributed to not sleeping well the previous night. Although she did not recall many details, having been rendered “out of it” by antiemetic agents, DS was noticeably short of breath when recounting the basics of her cancer experience. She was currently applying to graduate school in a health profession, having determined this career path as a result of her cancer experience.
DS identified her main sources of support as her family and her religion, especially during treatment, when her peers were busy with school and social activities. Interim medical history included revision of cancer-related surgical scars. Family history was significant for maternal depression. Current medications targeted anxiety and difficulty with concentration, neither of which predated cancer.
As part of the LTFU clinical visit, potential treatment late effects were reviewed with DS and she was informed of appointment times for echocardiography and bone mineral density assessment. She did not undergo these tests on that day and since then she has not responded to phone messages, nor has she returned to LTFU care.
BD is a 43-year-old male who in 2005 lost his house and community to Hurricane Katrina. After living for 6 weeks in a shelter, BD relocated to another part of the country, where he soon sought medical attention for a skin lesion on his right upper arm and was diagnosed with clinical stage III melanoma. Treatment included wide excision of tumor and therapeutic lymph node dissection, followed by interferon alpha-2b five times a week for 4 weeks.
During a follow-up visit nearly 3 years post diagnosis, BD complains of persistent pain, swelling, and loss of strength in the right arm, plus chronic fatigue. He is employed in the produce department of a grocery store that is part of a national chain. His job involves lifting heavy boxes and unloading produce, and his symptoms seriously impede his ability to do this work. BD notes that his coworkers and supervisor make nasty comments about his work that bring on intense anxiety and trigger flashbacks about Katrina and cancer, leading to feelings of guilt, fear of more losses including loss of employment and insurance, and despair. BD has not established friendships in his new community. He stays at home in the evening and uses alcohol to relax.
NURSING MANAGEMENT IN MONITORING FOR LATE EFFECTS
The first case shows how PTS can be expressed in long-term survivorship and, while these symptoms are not occurring to an extent that they meet full criteria for PTSD, they nonetheless affect the patient’s well-being, health practices, and future prospects. The case also demonstrates that monitoring for late effects requires nurses to be aware of the full range of late effects and the potential relationship between medical and psychological domains. Finally, the first case shows that perceptions of benefit in the cancer experience, referred to as post-traumatic growth, do not preclude co-existent symptoms of psychological distress including PTS/PTSD.
As seen in the first case, post-traumatic growth can include a sense of new possibilities, changed personal relationships, increased feelings of personal strength, greater appreciation of life, and deepened spirituality. While the idea of personal growth in the aftermath of trauma is not a new one, it has only recently been quantified in adolescent childhood cancer survivors and in adults who have been treated for malignant disease.[9–11]
Though it is required, trauma alone does not lead to posttraumatic growth; social support and opportunities to engage in conversations that aid the cognitive and emotional processing of traumatic events also seem to be necessary.
The second case shows that people who have been diagnosed with cancer can have a history of trauma prior to cancer, and such a history can enhance risk for developing cancer-related PTS/PTSD. The second case also shows that alcohol use, social isolation/lack of social support, and PTS can be seen as a cluster. Conspicuously, the patient described in the second case does not show evidence of post-traumatic growth, perhaps attributable in part to negative interactions at work and a general lack of social support, including opportunities to talk with caring others about his recent traumatic experiences.
The Children’s Oncology Group LTFU Guidelines state that the potential for developing psychosocial late effects is universal in the cancer experience and recommend that all childhood cancer survivors receive annual psychosocial assessment with particular attention to PTSD, anxiety, and depression. Given reports in the literature about PTS as a response to adult cancer,[9–11,13–15] adult survivors of adult cancer could also benefit from this type of psychosocial assessment.
Advanced practice and clinical nurses can start to address PTS by providing anticipatory guidance and educational materials to survivors and to their specialty and primary care providers about cancer-related PTS/PTSD, the normative role of characteristic symptoms, and how they can also be detrimental. Psychosocial assessment of survivors can be conducted via telephone or self-report online prior to the LTFU clinical visit and should include screening for cancer-related PTS/PTSD with a PTSD-specific screening tool like the 4-item Primary Care PTSD (PC-PTSD) or a tool that can also screen for the common PTSD comorbidities of anxiety and depression, for example, the 7-item Beck Anxiety Inventory–Primary Care (BAI-PC).
Given the possibility of multiple traumatic stressors over the course of a lifetime, cancer survivors might also be screened for having experienced other potential traumatic stressors such as rape, domestic violence, or child abuse that could reignite or increase cancer-related PTS. After traumatic events, people can increase their use of alcohol. Both alcohol and PTSD have been associated with increased risks for health problems, and these risks can be heightened by cancer treatment exposures. Complete psychosocial assessment of childhood and adult cancer would include asking about the use of alcohol and substances.
Survivors whose screening results are of concern can be scheduled in advance to meet with a mental health professional during the LTFU clinical visit for further evaluation and follow-up as clinically indicated. When a mental health professional is not available in the LTFU clinical setting, referrals should be made.
If screening prior to the clinic visit is not feasible, self-report psychosocial assessments can be completed in the waiting room or advanced practice nurses and clinical nurses can perform in-person screening during the clinical visit, with referral as indicated. Nurses can also note PTS such as physiological reactivity (sweating; rapid heart rate; shortness of breath; complaints of nausea, lightheadedness, or dizziness) during interactions with survivors.
Finally, psychoassessments should not focus solely on adverse outcomes. Advanced practice and clinical nurses may well inquire about a survivor’s life in general, including current activities and plans for the future, as this affords opportunities for discussing the good that may derive from or simply follow cancer without coercing survivors to present as excessively upbeat or cheery if that is not how they feel.
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