People living with metastatic cancer not only endure the physical side effects of their disease, but the mental and emotional impacts as well. Living in constant fear of recurrence takes a huge toll on a person; add to that the fear of a second cancer diagnosis, concerns about chronic and late effects of treatment, financial burdens, and grappling with a new identity, and it is easy to understand why individuals with metastatic cancer might need additional support.
According to Senior Nurse Practitioner at the University of Maryland Medical Center Katie Arensmeyer, MSN, ANP-BC, AOCNP, nurses and navigators can play a critical role in alleviating some of that burden on patients; they just need to know how they can help.
At the AONN+ 2020 Virtual Midyear Conference, Ms Arensmeyer outlined some of the most common themes cited among people living with metastatic disease and explained how providers can lessen the burden of these particularly devastating diagnoses.
Fear of Recurrence/Second Diagnosis
“Our patients have a lot of fear of progression or recurrence,” she said. “They also have fear of developing a new cancer, fear of treatment decisions, and fear of the results.”
When patients with metastatic cancer are due for annual imaging, the time from scheduling that appointment to receiving the results is “excruciating,” she said. “They fear what they’re going to find and what that’s going to mean. Is there going to be a need for them to start treatment again, and is there even going to be a treatment for them to take? There’s so much fear involved in all of this.”
Nurses and navigators should start by acknowledging that the fear their patients are experiencing is legitimate. “Especially when talking from a supportive or palliative care perspective, I ask my patients what they find most bothersome, and what is affecting their life the most,” she said. “We can’t assume things or tell someone how to feel about a cancer diagnosis and treatment; listen to them, validate their fears, and then address them.”
The most common secondary cancers are leukemia, myeloma, and breast, lung, and colon cancers, and these often arise from causes such as radiation or chemotherapy, or from risk factors like younger age or smoking. “A lot of the treatments we give to patients will prolong their life and control, or in some cases, cure their cancer,” said Ms Arensmeyer. “However, there are side effects, and one of them is a second primary cancer.”
Nurses and navigators should know the risks associated with these secondary malignancies. “Know what cancers your patients have, what treatments they’ve had, and any side effects of those treatments,” she said. “Educate the patient and their family of the risks and of the need for follow-up and testing, and assess patients for any symptoms.”
Chronic and Late Effects
Chronic side effects from chemotherapy or radiation present during treatment but persist after completion. Common chronic effects include neuropathy, pain, and lymphedema. However, these types of side effects are not limited to physical presentation. Patients can also experience psychosocial chronic effects, such as anxiety, depression, or reduced body image.
Late effects, on the other hand, are not present during cancer treatment and show up after the completion of treatment, possibly even years later. These might include early menopause, infertility, or cardiovascular disease.
According to Ms Arensmeyer, nurses and navigators should be aware of the potential quality-of-life impact of these side effects (eg, the impact of chronic diarrhea on daily life), and should be able to recognize the association between prior treatments and chronic and late effects. For example, a patient who was treated with radiation or chemotherapy who is now presenting with new shortness of breath might need an EKG.
Remember to address the emotional and physical issues as well. “That’s one of the things I love about being a nurse; we’re addressing everything with our patients,” she said. “Talk to them and find out how these things are affecting their lives.” She noted that these effects are not always obvious, offering an example of an elderly patient of hers who cherished sending handwritten notes to her loved ones, but who was absolutely distraught over how badly her neuropathy was affecting her handwriting.
Providers should be informed, ready, and able to make referrals to services such as support groups (as long as patients understand that their cancer is different and will be treated differently from other members of the group), counseling, and other providers, she said.
The Financial Burden
Patients with cancer frequently experience loss of income, often due to their inability to work or from missing too much time at work. They might lose their insurance or be forced to pay large out-of-pocket expenses, including copays or the cost of weekly over-the-counter drugs to combat side effects like constipation and diarrhea. Transportation and housing become added expenses when being treated out of town, and if a patient has children, childcare will almost certainly be necessary at some point. “If you don’t have a really good support system, you’re going to be paying for this,” she noted.
Navigators should be prepared to make referrals as needed to social work and assistance programs and should begin the prior authorizations process for their patients. Knowing what compassionate care programs are available for those with high out-of-pocket expenses can also remove a huge proportion of their financial burden.
Altered Identity and the New Normal
For patients with metastatic disease, cancer treatment and surveillance will forever be a part of their lives. In addition to this “new normal,” they also have a new identity, but Ms Arensmeyer warned that using the term “cancer survivor” might unintentionally pigeonhole patients into an identity limited to their diagnosis.
“For years, a huge buzzword has been ‘cancer survivor,’ but we’ve made this out to identify people by their cancer, rather than by who they are and what they do,” she noted.
Many patients experience a change in their role (eg, children may become caregivers), changes in their sexuality, and changes in personal relationships. For caregivers, resuming their normal life may translate to neglecting their partner, creating a huge amount of guilt for both parties involved. These patients and their caregivers may need additional support, or potentially medication, she noted.
But navigators can help patients through the process of finding their new identity. “Help them recognize who they are now compared to before their diagnosis, as well as who they will become as this disease progresses,” she said. “Respect the patient process of determining who they are with cancer. Let them work through this; just support them and be there for them.”
Also recognize the difficulty metastatic patients experience in dealing with either the presence or the absence of cancer. Even when a patient has no evidence of disease, they may be completely obsessed with the fear of it coming back. “It’s easy to become frustrated with these patients. I want to tell them to go out and enjoy their life,” she said. “But it’s important to recognize that these are real, legitimate fears.”
Unfortunately, the progression of metastatic disease will always eventually occur, and this is a hard pill to swallow for patients who have lived for years with no progression. The indication of progression can take many forms, from fatigue to weight loss to neurological changes, and any changes should be clearly communicated to other members of the healthcare team. “It’s not always easy to tell, but we always have to be thinking cancer,” she said.
Nurses and navigators should always try to remain empathetic and compassionate, even, or especially, when it is frustrating. “Even if we know what they should be doing, we need to understand that we are not that patient,” she added.
Finally, remember to be self-aware. “We need to know our own strengths and weaknesses, and whether we are transferring our own personal biases and beliefs into a situation,” she said. “We may have known these patients for years, so sometimes it’s hard for us to admit that they’re progressing or they’re going to die. We need to acknowledge that and have our own methods of dealing with those situations.”
