While overall cancer death rates have been dropping, the number of individuals being diagnosed with cancer has been going up, with younger patients increasingly affected.
This means that there is an ever-growing number of survivors in the United States, living longer—hopefully more fruitful—lives.
Given the lifelong impacts of a cancer diagnosis on patients and families, survivorship has finally emerged as a leading area for research and innovation.
As clinician researchers with personal experiences as either a patient (Lauren Ghazal) or a caregiver (Fumiko Chino), we have dedicated our lives to improving the “lived experience” of cancer and are happy to see research to improve cancer survivorship develop and mature.
Cancer survivorship is now defined as “the time of diagnosis until the end of life;” we know that navigation through initial workup, diagnosis, treatment, and long-term survivorship can be complex and challenging for both patients and families. The recognition that each patient is unique (with different needs, desires, and supports) is the basis for increased calls for “one size does not fit all” survivorship care models.
More tellingly, many oncologists did not discuss symptom self-monitoring with patients although they believed patients should be self-monitoring for symptoms of disease recurrence and late effects.
Patients diagnosed with cancer become experts in their cancer experience and often quickly adapt to the language of oncology and their disease. They are thrust into the recognition and awareness that a cancer diagnosis brings uncertainty, but, that in survivorship, they possess an incredible line of defense: self-management of symptoms.
Self-management is a lifelong, dynamic process of self-monitoring and self-evaluation, and, often, it oscillates between illness and wellness.
Many of our current survivorship models rely heavily on symptom self-monitoring, where the onus of reporting and disclosure of new symptoms falls on patients.
However, these critical symptom surveillance techniques are only effective if patients know exactly how, why, and what to monitor.
Sadly, consistent communication regarding symptom self-monitoring often does not occur, and there is no standardization across providers on how this is being implemented to cancer survivors and their families.
This was recently evaluated in a study by Webster et al., published in JCO OP, reporting on pediatric oncologists’ beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors.
The researchers found that pediatric oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry “unnecessarily” about symptoms of recurrence.
More tellingly, many oncologists did not discuss symptom self-monitoring with patients although they believed patients should be self-monitoring for symptoms of disease recurrence and late effects.
One oncologist from that study stated: “It’s a hard balance between telling anxious patients not to worry about every little symptom, but at the same time, they do need to think about it.”
This specific quote had us thinking about the tradeoffs in communication about self-monitoring given surveillance benefits, and fear of recurrence that both provider teams and patients face.
Sadly, thus far, the integral (patient) perspective of the self-monitoring experience is missing.
I (LG) was 26 years old, working as a family nurse practitioner, when I palpated my own supraclavicular lymph node. I immediately knew this non-tender lymph node was abnormal.
Multiple doctor’s visits, biopsies, and lab work later, I was diagnosed with stage 2 Hodgkin Lymphoma.
Throughout all the workup, I wanted desperately to be wrong, but I also knew I was strong in my clinical assessment skills; my concerns were real. The feelings I had when diagnosed were difficult to describe – terrified, overwhelmingly anxious, but also tinged with some relief: I was right to listen to my gut.
After intense treatment, four months after the “all clear” promise of remission, I felt another supraclavicular node. It was similar to what I had felt almost a year prior, non-tender, fixed; I immediately contacted my oncologist who urgently brought me in for bloodwork and a scan.
Fortunately, this time it was not cancer, just a lymph node. The feelings I had with this news were different. Relief, yes.
But, also, anxiety and fear that I could no longer trust my body or my clinical assessment. How could I be sure that how and what I feel is concerning or not? If something like this happens again, do I just ignore it or contact my oncologist?
This is the uncertainty that many cancer survivors grapple with the remainder of their lives… all while balancing side effects of the cancer and its treatment, and fear of recurrence.
There are many knowledge gaps about optimal communication during survivorship, but current research would show that we are likely not communicating effectively to patients about survivorship care plans or ongoing symptom burden.
This means giving survivors the knowledge and the tools to evaluate their lived experience for symptom burden, advocate for themselves, alert the care team when something is persistent or worsening; in other words… the tools to not just survive cancer but to thrive in survivorship.
Past studies have centered on the provider perspective; one framework looked at how clinicians can account for the different values patients have when deciding how to manage and respond to post-cancer symptoms.
While a shared decision-making approach is advised across all members of the care team, we do not know how to best integrate the full oncology care team to help with counseling patients and their families on being informed and empowered cancer survivors.
Nurse educators can provide vital, patient-centered information about symptoms (most recently studied in conjunction with remote self-monitoring); social workers can help patients and their families discuss their recurrence fears via support groups or appropriate onco-psychology referrals; and navigators can play an important role in connecting patients with financial resources and improving cost literacy.
Gaps continue to exist in the patient perspective, including how to improve communication to patients across all ages and diverse backgrounds.
Self-monitoring can empower patients; many patients (especially those diagnosed as adolescents and young adults) note that self-monitoring prompted them to initially be seen by a doctor and lead to their cancer diagnosis.
We also do not know the economic cost of patient self-monitoring of symptoms. In addition to “How do I know if my cancer is back?” and “How do I monitor for these symptoms?”, patients struggle often with the practical question of “How much will this follow-up cost me?”
Our prior research has shown that patients may even delay or neglect necessary care based on affordability concerns.
These are the tradeoffs I (LG) weighed at the time when I asked myself,“What am I willing to pay to be assured my cancer had not returned?”
The financial and economic consequences around symptom self-monitoring that could ultimately contribute to financial toxicity are still not fully evaluated.
Concerns from providers may include that educating or discussing self-monitoring can lead to more follow-ups or healthcare utilization (or at least more portal messages).
Sadly, what we do know is that our current status quo is not working. It leaves patients without the resources or the knowledge to be fully engaged in their survivorship care; it can exacerbate fears of recurrence with survivors facing the unknown without a guidebook.
We suggest that to improve the process, we need more research directed at effective provider–patient communication, and tailored interventions that engage the full care team to address each patient’s unique needs and experiences.
This means giving survivors the knowledge and the tools to evaluate their lived experience for symptom burden, advocate for themselves, alert the care team when something is persistent or worsening; in other words… the tools to not just survive cancer but to thrive in survivorship.
