The Other 27 Days
What Happens Between Cancer Appointments?

Living with cancer does not happen only in an oncology clinic.

I know this from experience. Every four weeks, I drive about 45 minutes from my home to the infusion center, where I receive treatment and see a nurse practitioner or oncologist. At least once a year, I also make a roughly four-hour trip to see my multiple myeloma specialist in Atlanta.

There are 27 days between those visits when I am living life with cancer outside of the clinic.

A lot happens in 27 days.

There are the expected “knowns”. Fatigue can get better or worse. Sleep patterns change almost nightly. Pain appears, disappears, or moves. Appetite changes. Neuropathy, which I largely adjusted to over ten years ago, may become more noticeable. A medication dose may be delayed or missed. Mood and anxiety fluctuate. Exercise that felt easy last week may suddenly feel difficult or even impossible. Sometimes there is an obvious explanation. Sometimes there isn’t.

When appointment day comes, I’m asked “How have you been feeling?” I have to shape nearly a month’s worth of happenings into a single moment.

The Limits of a Snapshot

Cancer care generates an extraordinary amount of information such as lab results, imaging, medications, diagnoses, treatment schedules, and clinical notes. All of that information is important, but it does not definitively tell the complete story of how a person felt and functioned between visits.

The challenge is not that patient experience cannot be measured. Many aspects of it can be captured using validated patient-reported outcome measures that turn subjective experiences such as pain, fatigue, anxiety, physical function, and quality of life into information that can be followed over time.

The harder problem is timing.

When I am sitting in the infusion center on day 28, I am asked to remember what happened during the previous 27 days. I may remember that I had a particularly bad day or that I have generally felt more tired, but I probably could not tell you exactly when the fatigue started, whether it followed treatment, how my sleep was at the time, whether my activity declined first, or whether the problem has actually been getting progressively worse.

That’s the difference between asking a patient to reconstruct the past and giving that patient a way to record the experience while it is happening.

The U.S. Food and Drug Administration defines a patient-reported outcome (PRO) as information coming directly from a patient about the status of their health, without interpretation by a clinician or anyone else. Symptoms such as pain or nausea may be known most directly by the person experiencing them. The FDA’s Project Patient Voice reflects a broader movement toward making this information more visible in oncology.

Research also suggests that systematically collecting symptoms between visits can matter. In randomized studies of people receiving cancer treatment, electronic patient-reported symptom monitoring has been associated with improvements in symptom control and health-related quality of life. More recent research from the PRO-TECT trial found that electronic symptom monitoring prolonged the time to a first emergency visit and reduced emergency visits overall, although it did not improve overall survival.

That distinction matters. Technology is not a cure for cancer, and collecting more data is not automatically better care. The question is whether the right information, collected at useful intervals and presented meaningfully, can help patients and their healthcare teams understand what is happening between appointments.

Why Is Cancer Active Building CAPP?

Living with cancer is continuous, even when cancer care is episodic. That’s the basis upon which we are building CAPP.

Instead of relying solely on what a patient can remember at the next appointment, CAPP is being designed to help patients regularly record aspects of their experience over time. That includes established patient-reported outcome measures as well as information about symptoms, treatment, medications, physical function, mental wellness, and other factors that can affect quality of life.

The goal is not to replace an oncologist, interpret symptoms as a diagnosis, or tell someone how to treat their cancer. It is to help create a clearer longitudinal picture of the patient’s experience.

A single fatigue score is a snapshot. A series of fatigue scores alongside sleep, treatment timing, physical activity, appetite, pain, and other information begins to look more like a movie.

Patterns become easier to see.

And patients may be able to arrive at their next appointment with something better than, “I think I’ve been more tired lately.” They may be able to describe when the change began, how long it lasted, what else was happening at the time, and whether it is improving or getting worse.

Building, and Testing, What Comes Next

CAPP is currently in active development, with the working platform available through the CAPP website. To clarify, it is not yet a clinically validated intervention. Our job at Cancer Active now is to build it carefully with input from patients, clinicians, caregivers, researchers, and other stakeholders, and ultimately study whether it actually improves outcomes that matter to people living with cancer.

This portal is the anchor of Cancer Active’s philosophy. We believe patients should be active participants and stakeholders in understanding and improving their quality of life, while working in partnership with their healthcare teams.

My infusion and assessment happen on a single day in a life. Life happens on the other 27.

Kenny