Why we are diagnosing disease too late

It is well understood that the late diagnosis of a serious health condition can lead to a much worse health outcome.

This can be best understood in the context of cancer. During our lifetimes, all of us have just over a 50% chance of being diagnosed with cancer. And yet despite the visibility and awareness that we have about cancer, almost half of those diagnoses happen when the patient reports to the hospital with acute symptoms of advanced cancer.

Cancer is diagnosed on average at late stage II, around the time that it begins to spread to surrounding lymph nodes and organs. The cost of this late diagnosis is significant as the odds of survival, which can differ greatly by the type of cancer, can be 4-7x higher for cancers that are diagnosed at stage I. And cancer that is diagnosed at late stage II can sometimes be growing, undetected, in your body for several years.

So why is it so hard to diagnose cancer and other diseases early? Here are four reasons that each play an important part.


Lack of screening tests or poor accuracy

The ugly reality of modern medicine is that, when it comes to preventative health or early diagnosis, there is very little available to the average front-line doctor This greatly impacts the ability to diagnose disease when it can be best treated.

Take again cancer as an example. There are really only three widespread cancer screening programs - mammography for breast cancer, a PSA blood test for prostate cancer and a colonoscopy for colon cancer. Each has their own problems: patients don't like doing a colonoscopy even though it is a highly accurate screening, mammography struggles to see through dense breasts and has a relatively high false positive rate, and PSA levels in men can vary for many reasons unrelated to prostate cancer.

Many other conditions - aneurysms, dementia, stroke risk, IBD, colitis, kidney stones and so on do not have effective screening tests.

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We aren't very good patients

Even when symptoms are present, we are not always the best to follow up on them.There are lots of underlying reasons why we do not check in with the doctor more often.

We often fear what we would learn if that pain was just a "normal thing".

We trivialize symptoms rather than entertain the thought that it could be something serious.

We don't want to be seen as "the sort of person who goes running to the doctor" whenever anything feel out of the oerdinary.

Or it might just be difficult to visit a doctor and don't want to jump through the hoops and waiting room visits to do it.


Many serious diseases lack symptoms until advanced

If you ask most physicians if pancreatic cancer is a terminal cancer they will say "yes". But the reality is that it is mainly deadly because it is caught very late. And it is caught late because there are rarely early symptoms. Almost all cancer that you can't see (eg. skin cancer) or feel (eg. testicular cancer and breast cancer) do not tend to cause symptoms in the early stages of the disease.

Other major disease also tend to hide their symptoms. This might be due to the fact that our bodies have a lot of built in "plasticity" so an organ can become quite diseases before function is severely impair. This might be due to the disease causing small enough changes in how you feel that you just attribute it to getting old. A small number of fatal conditions like aneurysms very rarely give any warning at all before they become deadly. And finally, some conditions give conflicting signals. For example, kidney cancer often materializes as a pain in the shoulder and prostate cancer is often felt as a pain in the thigh!

Doctors have trouble being a good backstop

Doctors also have to make pragmatic decisions when a patient presents with symptoms. For example, in the abdomen there are several thousand medical conditions that share 300 or so common symptoms.

Sometimes they diagnose the most likely disease that fits the facts (eg. Irritably Bowel Syndrome is more likely than colon cancer)

They might be discouraged by cost pressures in the health system from investigating low probably diagnoses, even if they have serious consequences for the patient.

Or, increasingly, they might just be overworked and going through the motions.