Diagnosing cancer is hard

During my time on service working in oncology clinics, I see probably one patient or more a month who is angry or upset that their cancer diagnosis took between months and years from the start of symptoms to the time of diagnosis. In a future post I will write about my thoughts on what can be done on the physician side of this issue; today I want to write about what patients should understand in order to reduce their anger and frustration.

Basically, diagnosing cancer is extremely hard to do. As with the rest of diagnostic medicine, it is more of an art than a science. Primary care physicians see patient after patient with a wide range of complaints, the vast majority which turn out to be from benign causes. If all of these complaints led to an x-ray/ultrasound/CT scan, the health care system would be stretched way too thin, there would be significant harm from chasing down incidental findings from these scans, and there is no guarantee that these tests would pick up an early stage, small cancer in the first place. I’m not sure oncologists understand just how hard it can be to pick the appropriate patients in whom to arrange a “cancer workup” since almost all patients we see come with a biopsy proven tissue diagnosis of cancer, and we never see the patients with similar symptoms who fortunately don’t have cancer.

The public has the perception, via the media and public campaigns, that the medical community is making great strides in the area of cancer research. And while this is true in terms of treatments (better focussed radiation, new pills that target cancer cells specifically), very little has changed in terms of being able to diagnose cancer earlier. While the public is also well aware of the few successful screening programs (including Pap smears, mammography and fecal occult blood for colon cancer), I get asked regularly “Isn’t there a way to screen for cancer X” (where X is thyroid, lung, ovarian, etc). And unfortunately, despite a lot of effort, most cancers do not have any effective screening tests. There are some blood tests that are useful to monitor after a patient has a cancer diagnosis, but none have been shown to effectively screen patients in order to diagnose cancer (outside of PSA for prostate cancer, which is a topic for another day).

I hope I am not coming off sounding paternalistic by telling patients they shouldn’t be upset or angry when it takes a long time to be diagnosed with a potentially life threatening disease. Those are natural feelings in such circumstances. I just want patients to understand that their primary care doctors and other physicians they have seen along the way are not incompetent and are doing their best to act in patients’ best interests. What’s important is to try to move beyond whatever happened in the past and focus on getting through the necessary treatments to achieve the best possible outcome.

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