Mental Health and Cancer
A cancer diagnosis affects patients not only physically but also mentally—both those with preexisting mental health conditions and those with no history. Social workers must be informed and able to help.
In 2008, Nancy Stordahl lost her mother to metastatic breast cancer. In 2010, she was diagnosed with cancer herself. "I also tested positive for the BRCA2 gene mutation and was subsequently advised to have a bilateral mastectomy, which I did. I opted for breast reconstruction as well," she says.
Stordahl received chemotherapy for several months and, at the advice of her physicians, had her ovaries and fallopian tubes removed in addition to receiving a complete hysterectomy. "Presently, I am on an aromatase inhibitor and, so far, I'm still NED (no evidence of disease)," she adds.
The physical—the surgeries, the treatment—were and continue to be just one aspect of Stordahl's experience with cancer. "Hearing those words—'You have cancer'—has a profound effect on a person," she says. "Once you hear those words, you can't go back. Your life as you knew it is over. So that in itself is a pretty profound impact.
"Obviously there was a lot of stress, fear, worry, and uncertainty not only for myself but for my family as well," she recalls.
Individuals like Stordahl and their families fighting, coping, and living with cancer face a challenge to their emotional and mental well-being from the moment of diagnosis through—hopefully—the years of recovery. "Cancer is not a before and after event in your life. It's never really over, at least this is the case for me and for the majority of my readers as well," says Stordahl, who writes the award-winning blog Nancy's Point and is the author of Cancer Was Not a Gift & It Didn't Make Me a Better Person: A Memoir About Cancer as I Know It, Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy, and Facing Your Mastectomy & Making Reconstruction Decisions.
Knowing this—that a diagnosis of cancer and the treatment that follows can have long-lasting effects on patients—social workers in the field of oncology must strive to be present and serve their patients, both those who have no preexisting mental health conditions such as Stordahl and those who do. Doing so will allow for the best-quality care to be provided.
And of course, the weight of the impact will vary from person to person. "For people who had few to zero mental health concerns prior to cancer, cancer and cancer treatment tend to have at least a slight negative impact on their mental health, even if that person has excellent coping strategies," says Wendy Griffith, LCSW, OSW-C, senior social work counselor at The University of Texas MD Anderson Cancer Center. "In some cases," she adds, though quickly noting that it's not common, "patients have actually reported that cancer/cancer treatment had a somewhat positive effect on their mental health because it made them focus on what is important and gave them a new appreciation for life. I think that experience is heavily dependent on how serious the cancer is, how intense the treatment is, and what the patient's mental health was like before cancer."
Though one cannot predict to what degree and how cancer and cancer treatment will affect each individual patient, there are some common manifestations. For example, "scanxiety" refers to the anxiety, stress, and fear many patients experience before and after their scans. The scans indicate to physicians how treatment is progressing and if the disease has spread or retracted. Given the importance of each scan's results, scanxiety runs the gamut in terms of impact. Patients new to treatment as well as those who have been in remission for many years often experience symptoms in the lead up to each procedure.
Additionally, some medications can add to and/or mirror symptoms of mental health conditions. Heideck explains that several of the treatments for leukemia involve steroids. "That can cause mood lability. The patient may quickly go up and down in their moods," she says. This causes significant distress for any patient, but especially for patients who normally have stable moods.
Teresa Johnson, MSW, LCSW-R, senior medical social worker at Roswell Park Cancer Institute, adds, "In some cases, the medications used in cancer treatment can contribute to sleep problems, fatigue, poor appetite, agitation, restlessness, or even delirium. It is very important to take into account possible medical causes when assessing a patient's mental health."
The opposite is also true. A mental health condition cannot be discounted simply because the symptoms are akin to the physical health condition. "We have to work with the patient to figure it out," Heideck says.
Additionally, patients struggle regularly with the ways in which their lives have altered. "Major life changes, including changes in work status, role changes within the family, financial strain, decreased independence, changes in body image and intimacy, etc., can be very distressing," Johnson says. "Fears related to treatment and worry about the future are natural. It is not uncommon for patients to experience feelings of grief, anxiety, or depression in the context of adjustment to their illness."
For instance, the mental health condition, if very severe, can detract from the patient's ability to recognize that he or she may be experiencing a physical illness. "I think that people may minimize things that are happening," Heideck says. "Maybe they don't have good primary care to begin with or they may not be tuned into what's going on with their body and what that means."
When they do receive the diagnosis, adherence to the treatment plan may become an issue. "If someone is feeling quite significantly depressed, they may get into a negative thought pattern," Heideck says. "People often feel worse before they start to feel better, and [so they may think] it's not doing any good. They get into a spiraling thought pattern of 'Why should I keep going?' They might stop or interrupt treatment."
Johnson agrees. "Undergoing cancer treatment can be an intense process, even for those who are coping well," she says. "Patients with clinical depression may lack motivation and energy to attend appointments or may feel hopeless about the outcome of treatment. Patients with PTSD may feel traumatized by the invasiveness of treatment or can be triggered by feelings of vulnerability. Those who struggle with significant anxiety may delay needed testing or avoid necessary treatment due to fear of the outcome."
Even when patients are wholly compliant with their treatment, there can be barriers. Heideck notes that some patients with conditions such as generalized anxiety disorder may catastrophize every symptom or lack the ability to effectively cope with a significant increase in anxiety. As a result, the patient may overwhelm the care team with constant concerns. It is important that the patient's worries be addressed, and the social worker can be instrumental in helping the patient and the care team develop an appropriate intervention plan that addresses these issues.
If the patient is taking medication for his or her mental health condition as well as for cancer, conflicts may arise. However, it is usually not a result of the medications interacting poorly. "None of my patients ever had negative interactions between psychotropic drugs and cancer treatment drugs, but that certainly doesn't mean they don't exist. Some chemotherapies and symptom management medications do change the functioning of certain organs that may be critical in the absorption processes. Additionally, some treatments cause significant weight changes, which often then requires a change in dosage of the psychotropic drugs," Griffith says.
Griffith says MD Anderson cancer patients regularly review their medications with their care team. "[This] allows our system to trigger an alert for any contraindications for new drugs that might be prescribed. Our psychiatrists, supportive care, and integrative medicine teams are also familiar with psychotropic drug profiles and can offer advice on how to balance medications and symptoms. If contraindication is identified, the treating physician and consulting provider (e.g., psychiatrist, supportive care physician, integrative medicine advanced practice provider) work together to find a solution that will best support the patient," she says.
"Comprehensive coordination of care, such as our model at the Seattle Cancer Care Alliance, also referred to as collaborative care, is a system of care whereby services that are specially needed to treat the cancer patient are joined together in a manner that makes them easily accessible to those who need them," says Tammy Weitzman, MSW, LICSW, a hematology/oncology clinical social worker at Seattle Cancer Care Alliance. "Collaborative care is patient focused. It provides centralized psychosocial care for our patients. The care manager, generally a clinical social worker, who is a key member of the medical team, has regular interaction and collaboration with psychiatry and psychology colleagues and other supportive care providers to create a multidisciplinary and cohesive team that can deliver comprehensive and holistic care."
For the care to be truly holistic, all team members must be aware of the importance of mental health, not only the social worker and psychology/psychiatry staff. Fortunately, that appears to be a knowledge base that is improving, though it still runs the gamut.
"Providers' level of expertise, experience, and comfort with mental health varies greatly," Johnson says. "I have worked with some professionals who routinely assess for and address mental health and coping concerns and others who rarely assess for these issues. However, the importance of screening for mental health and distress is becoming more widely recognized and is now mandated by the Commission on Cancer."
Role of the Social Worker
"Social workers are trained not only in mental health but [also] in assessing patients from a strengths-based, person-in-environment perspective," Johnson says. "We explore the impact cancer may have on all of the patient's systems, both internally and externally, to help us gain a deeper understanding of the patient experience."
With that understanding, social workers are able to take next steps with the medical team, the patient, and the patient's support system. These steps include cancer treatment as well as meeting with the patients to provide appropriate aid. "Clinical oncology social workers [help] patients, families, and their caregivers manage their experience of facing cancer," Weitzman says. "Clinical oncology social workers work with and meet patients individually, together with their families, or as facilitators of support groups. Within our collaborative care model we conduct psychosocial assessments and distress screenings in an effort to identify those patients who are experiencing distress and get them the appropriate level of care/treatment early on."
Griffith adds that connection to resources is an important aspect of providing care. The resources may be available through the facility, such as MD Anderson, or in the community. "For example," she explains, "some anxiety might be related to finances because they don't have expendable income to pay for secondary treatment costs like temporary housing, transportation, parking, etc., so we explore their financial situation and link them to financial resources they might be eligible for."
At the end of the day, regardless of what services the social worker offers, the most important team member is the patient. Without them, their trust, and their openness, nothing can be done to ensure that one's mental health is addressed throughout treatment.
The most important task for the oncology social worker is to be present. If patients don't know who the social worker is and what the social worker offers, they cannot access the services they need to become and remain as healthy as possible, physically, emotionally, and mentally.
In being present, the social worker in turn will be granted a perspective on humanity few are able to see. "You see the resilience and beauty of the human spirit and the way people come together to care for someone," Heideck says. "When you witness some of this, it's really beautiful."
— Sue Coyle, MSW, is an award-winning freelance writer, a social worker in the Philadelphia suburbs, and a frequent contributor to Social Work Today.