Having either cancer or fibromyalgia is a challenge that millions of Americans face every year. But how do those with comorbid cancer and fibromyalgia fare? Addressing comorbidity between cancer and fibromyalgia is an emerging, but still lacking, area of research. Multiple studies dating as far back as 2001 show a link between developing cancer after fibromyalgia or fibromyalgia symptoms1,2 and vice versa.3 However, much of the currently available research has been specific to patients with nonmetastatic breast cancer and it is, of course, challenging to discuss the relationship between these diseases in any authoritative way when research is limited both in number and in scope.

While linking cancer and fibromyalgia may seem stochastic, some basic facts common to both diagnosis make it important to consider those who experience both, either concurrently or consecutively. Both diseases are highly prevalent in the United States population: according to the American Chronic Pain Association, fibromyalgia is estimated to affect 6 to 12 million Americans, but that number may a low estimate due to underdiagnosing. Per the National Cancer Institute, over 1.7 million Americans are diagnosed each year with cancer, and over one-third of all Americans will be diagnosed with cancer at some time in their lives. In addition to being common yet serious diseases, both cancer and fibromyalgia bring a high burden of physical pain1,4 and negative effects on mental health.1,5 The coupling of each of these diseases and their side effects can lead to poorer quality-of-life, higher chance of psychological disability,4 and barriers to employment.

Despite all that is known about the challenges associated with cancer and fibromyalgia and their high frequencies, patients still have trouble accessing proper care for these medical conditions. Despite repeated recommendations that the mental health of cancer survivors be closely monitored, many survivors struggle to obtain access to this care.4,5 Furthermore, those living with fibromyalgia were found to be undertreated despite an increased understanding of the disease and treatments being available.6 Fibromyalgia in particular is a medical condition that is associated with a stigma both in the general public and by medical providers as a “mind-body” condition.1

This topic came to my attention after providing short-term counseling to a number of women who had comorbid breast cancer and fibromyalgia. Of the patients I encountered, all reported experiencing high levels of physical pain, depression, and feeling like their medical team had a laissez-faire attitude toward their pain management. Although multiple studies have found a connection between cancer and fibromyalgia, I was not able to find credible information or research on patients who have had both diseases, especially not for those suffering with both simultaneously. With limited empirical information, it is my fear that many Americans are not being accurately diagnosed with both conditions, either at the same time or over time, and are not receiving an adequate level of care for the long-term side effects, both physically and mentally, that are brought on by these health conditions. In my work, I see a great need for this to be investigated further both on a one-to-one level with patients and in the oncology and rheumatology communities at large.

This article originally appeared on Oncology Nurse Advisor