Recognizing and Managing Emotional Distress
Chimène Jewer, M.Sc., R. Psych.
Reaction to the Diagnosis
Cancer remains one of the most feared diseases. It can be a difficult and stressful illness for patients and families. Cancer affects more than the body – it can affect emotional/mental health, relationships with friends and family, work and finances. It is common for a cancer diagnosis to create emotional distress for patients and their families. When you or a loved-one is diagnosed with pancreatic cancer, your feelings may confuse or overwhelm you. Each person will react in a unique way to the diagnosis.
Common Reactions to a Pancreatic Cancer Diagnosis May Include:
· feelings of helplessness
It can be difficult to differentiate between a “normal” reaction to the diagnosis or “normal” emotional distress in cancer patients versus depression, anxiety, and other mental health issues that require treatment. Fortunately, many people diagnosed with pancreatic cancer react with a normal level of sadness. A “normal” reaction to a cancer diagnosis may be characterized by sadness and grief. Symptoms of depression and anxiety may wax and wane throughout the course of diagnosis and treatment, and depend somewhat on the progress of the disease. Many patients manage with support from family and friends. Most patients will not require treatment beyond support provided by physicians, nurses, and social workers.
Coping Skills for Pancreatic Cancer Patients:
- Remember that it is normal to feel emotionally distressed
- Talk to your family and friends about your thoughts and feelings
- Educate yourself about pancreatic cancer and prepare questions to ask your doctor (see other section on Questions to Ask)
- Engage in pleasant, fun activities and hobbies (e.g. music, sports, art, yoga, etc.)
- Practice deep breathing and relaxation techniques
- Keep a journal of your thoughts and feelings
- Exercise (if approved by your doctor)
- Follow proper nutrition guidelines
- Get plenty of rest/sleep
- Attend a support group if available (e.g. Craig’s Cause Support Group)
- See a mental health professional (e.g. psychologist) to talk about your thoughts and feelings
- Talk to your doctor about how to manage depression and anxiety and other mental health issues
The caregiver role can also be stressful. Caregivers are often seen as the “hidden patients”. Caregiver burden or stress refers to the physical, emotional and financial toll of providing care to a patient. Caregivers may be prone to grief, fatigue, relationship and physical health problems. Caregivers are also at an increased risk for depression and anxiety, with depression also being the most common issue among caregivers. Studies have found increased rates of depression (e.g. 18-47%) among caregivers.
Caregivers with better coping and stress management skills tend to feel less burdened and experience less burnout and depression. Family support and frequent visits by other family members may help to reduce caregiver burden. Having a strong social support network is also associated with lower caregiver burden.
Coping Skills for Caregivers:
Remember that if you don’t take care of yourself, you won’t be able to take care of anyone else!
- Educate yourself about pancreatic cancer
- Find sources of support – especially respite care
- Protect personal time/breaks from caregiving for fun, pleasant activities
- Practice good self-care – exercise, eat well, and get enough rest/sleep
- Rely on friend and family for support or find a support group for caregivers (e.g. Craig’s Cause Support Group)
- Watch for symptoms of depression and anxiety
For some pancreatic cancer patients however, depression and/or anxiety may present an additional concern. A personal history of depression and/or a family history of depression or substance abuse can increase the risk of depression and other mental health issues among pancreatic cancer patients. Concern arises when symptoms of emotional distress are prolonged, intolerable, and interfere with a patient’s daily life.
Research has found high rates of depression and anxiety in cancer patients, compared to the general population. Pancreatic cancer has an especially high incidence of depression, possibly because it still has a very poor prognosis. Research suggests that as many as 50% of pancreatic cancer patients will experience depression compared to 30% of other cancer patients. Some researchers have suggested that depression in pancreatic cancer may be due to biological processes inherent in the pathophysiology of pancreatic cancer and the tumor itself.
A challenge in assessing depression symptoms lies in not missing them or blaming them all on cancer and treatment. Recognizing and diagnosing depression in cancer patients requires special attention because physical symptoms, such as fatigue and weight loss, are common in cancer patients. Therefore, the focus ought to be on the psychological symptoms of depression, such as hopelessness, loss of interest or pleasure in activities (i.e. anhedonia), and suicidal thoughts. Loss of interest or pleasure in activities (i.e. anhedonia) and suicidal thoughts are dependable diagnostic markers for depression in pancreatic cancer patients.
Symptoms of Depression:
- Depressed mood or irritable most of the day, nearly every day, as indicated by either a subjective report (e.g. I feel sad or empty) or observation made by others (e.g. my husband appears tearful).
- Loss of interest or pleasure in usual activities (i.e. anhedonia)
- Change in appetite
- Significant change in body weight (> 5%)
- Difficulty sleeping (insomnia or hypersomnia)
- Restlessness or feeling “slowed down”
- Fatigue or loss of energy
- Feelings of guilt, worthlessness or helplessness
- Diminished ability to think or concentrate, or more indecisiveness
- Thoughts of death or suicide
Although depression is the mental health issue that has received the most attention, has been the most frequently studied, and is certainly the most common among cancer patients, cancer patients may also experience anxiety. Anxiety is defined as feeling nervous, on edge, or worried much of the time. Fear or anxiety is a normal human emotion that alerts us, by way of the fight-or-flight response, to respond to threat. Anxiety becomes a concern however, when it is prolonged, intolerable, and interferes with the patient’s daily life.
Anxiety May Be Related to Fears About:
· Upcoming test results
· Undergoing treatment
· Experiencing treatment-related side effects
· Having the cancer spread (i.e. metastasize)
· Having the cancer return after treatment (i.e. reoccurrence). Anxiety about reoccurrence is a significant issue for cancer survivors.
Symptoms of Anxiety:
· Excessive worry
· Restlessness or feeling keyed up or on edge
· Being easily fatigued
· Difficulty concentrating or mind going blank
· Muscle tension
· Sleep disturbance (difficulty falling or staying asleep, unsatisfying sleep)
Anxiety can be a chronic, daily experience, or can occur in short, intense bouts such as with a panic attack. A panic attack involves feelings of terror that strike suddenly and repeatedly with no warning.
Symptoms of a Panic Attack:
· Palpitations, pounding heart, or accelerated heart rate
· Trembling or shaking
· Sensations of shortness of breath or smothering
· Feelings of choking
· Chest pain or discomfort
· Nausea or abdominal distress
· Feeling dizzy, unsteady, light-headed, or faint
· Chills or heat sensations
· Numbness or tingling sensations (paresthesias)
· Feelings of unreality (derealization) or being detached from oneself (depersonalization)
· Fear of losing control or “going crazy”
· Fear of dying
Cancer-related Post-traumatic Stress Disorder (PTSD)
Although many people may think of military combat when they think of Post-traumatic Stress Disorder (PTSD), it can also apply to cancer survivors. The definition of a “traumatic” event includes experiencing a life-threatening illness, such as cancer. Patients with a history of cancer are considered to be at risk for PTSD.
Symptoms of cancer-related Post-traumatic Stress Disorder may include:
· Recurrent, involuntary intrusive distressing memories about the cancer and cancer treatment;
· Recurrent, involuntary intrusive distressing dreams about the cancer and cancer treatment;
· Dissociative reactions (i.e. flashbacks) in which the individual feels as though they are reliving part of their cancer or treatment experience;
· Intense or prolonged psychological distress when exposed to triggers that remind the patient of their cancer or treatment (e.g. anxiety when entering a hospital);
· Intense physical distress when exposed to triggers that remind the patient of their cancer and cancer treatment (e.g. feeling nauseous when entering a hospital);
· Making efforts to avoid thinking or talking about cancer and/or triggers that remind the patient of their cancer and cancer treatment;
· Feeling emotionally numb toward family members and friends;
PTSD is a concern particularly because it may result in patients avoiding medical care and follow-up. Having a good support system, including a good relationship with medical staff, could help reduce the risk of developing PTSD symptoms after cancer.
Effects of Mental Health Issues
Depression and anxiety have been associated with decreased social and emotional wellbeing in cancer patients. Depression is a crucial factor that can impair quality of life (QOL) in pancreatic cancer patients. Depression and anxiety can also have an adverse impact on the patient’s ability to make treatment decisions and follow through with treatment recommendations.
Mental Health Treatment
Maintaining good mental health is an important aspect of comprehensive cancer treatment. Depression and anxiety are highly treatable mental health conditions. Depression and anxiety are typically responsive to psychological therapy and/or medication and cancer patients do respond to psychotherapy and medication.
A combination of Cognitive-Behavioural Therapy (CBT), supportive psychotherapy, and/or medication has been found to play a significant role in managing cancer-related depression and anxiety. CBT may include: reframing thoughts; relaxation strategies; and visualization exercises. Relaxation strategies include deep breathing exercises and visualization exercises may involve picturing a favourite place, a relaxing scene, or may involve picturing the cancer being eradicated in your mind’s eye. Studies suggest that regardless of the method of delivery (e.g. individual, group, face-to-face, telephone, or online), the most effective psychosocial intervention for cancer patients focus on the same basic elements: providing education; stress management; Cognitive-Behavioural Therapy (CBT), and support.
Mindfulness-based treatments may also be helpful for pancreatic cancer patients. Mindfulness-based treatment focus on learning acceptance, living according to your values, staying attuned to what is happening in the present moment, and meditation exercises. For patients with cancer-related PTSD symptoms, Cognitive-Behavioural Therapy (CBT) or Eye Movement Desensitization and Reprocessing (EMDR) are helpful treatments.
Unfortunately, research suggests that mental health services tend to be underutilized by cancer patients. Mental health issues may be under recognized and undertreated among pancreatic cancer patients. Patients and healthcare providers may overlook mental health issues in light of the seriousness of pancreatic cancer. Pancreatic cancer patients and families themselves may not seek mental health treatment due to perceived stigma around mental health issues. Studies suggest that cancer patients are quite receptive to receiving mental health treatment, however. The majority say they would go for mental health treatment if they knew that they had a mental health issue that warranted treatment.
Community Services Locator
The Canadian Cancer Society’s Community Services Locator (CSL) is a directory that helps cancer patients, caregivers and healthcare providers find the services they need. For more information, visit the webpage here or call 1 888 939-3333.
Craig’s Cause Pancreatic Cancer Society Support Group
Craig’s Cause Pancreatic Cancer Society offers monthly support group meetings for anyone touched by cancer. The support group features guest speakers, question and answer period, and an opportunity to socialize with others who understand. The meetings take place on the first Tuesday of every month at 7pm at the Canadian Cancer Society’s The Lodge that Gives, 5826 South Street, Halifax, Nova Scotia. For more information, please visit the Support Page.
Cancer Chat Canada is a free online support group led by professional counsellors for patients and loved-ones.. The online groups are structured to provide emotional support and a place to safely discuss topics. Members are encouraged to speak openly and to support each other. For more information, call 1-877-547-3777 extension 645234 or email firstname.lastname@example.org or visit the webpage here.
Cancer Connection is an online community where cancer patients and their loved-ones can share experiences and build relationships to help them through their cancer journey. This is an open online community, so it is important to only post information that you are comfortable sharing, and it is suggested that you use a screen name, not your real name, in order to protect your privacy. For more information, visit www.cancerconnection.ca/home
The Canadian Cancer Society’s Peer Support Service connects people living with cancer and caregivers with trained volunteers who offer encouragement and share ideas for coping – all from their unique perspective as someone who has been there.
Visit the website here.
Provincial Inventory of Psychosocial Resources
The Inventory of Psychosocial Resources in Nova Scotia was developed by Cancer Care Nova Scotia in partnership with the Canadian Cancer Society – Nova Scotia Division. The focus is on licensed health care professionals, such as psychologists, psychiatrists, social workers, nurses, spiritual care providers, as well as others who provide psychosocial and supportive care to patients. To download the guide go to this link.
The Sunshine Room at the QEII Hospital in Halifax is a wonderful resource of cancer patients. It is a comfortable, supportive area where people undergoing cancer treatments can be introduced to alternative and complimentary therapies including Massage Therapy, Reiki, Therapeutic Touch and Reflexology. These services are provided free of charge by trained volunteers. To learn more about The Sunshine Room, visit here.
QEII Psychosocial Oncology Team
The QEII Psychosocial Oncology Team provides care for the psychosocial needs of patients and families. The Psychosocial Oncology team provides help for the psychological, emotional, spiritual and social needs of patients and families. The Psychosocial Oncology Team includes social workers, spiritual care providers, nurses, psychologists and psychiatrists. The team screens patients for emotional distress and directs patients to appropriate resources based on results of screen.
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