The Evidence Gap

Here is an important article for Healthy Survivors: The Pain May be Real, But The Scan is Deceiving. It's the story of an otherwise healthy woman with knee pain who undergoes CT and MRI scanning. The scans revealed a torn meniscus. Now the problems begin.

The issue is not if she has an abnormality in her knee, but how this abnormality is related to her pain. Obviously, if the tear is not the cause of her pain, repairing the tear won't help her (and will expose her to the risks of the surgery).

When I was in training, we called this a "true-true-and-not-related" phenomenon. Yes, it's true she has pain. Yes, it's true she has a torn meniscus. But, they are not related.

Healthy Survivors understand that scans can show abnormalities that are not problems. If it looks broken, but it ain't broken, Healthy Survivors don't try to fix it.  Now here's the rub: How does a Healthy Survivor know if it is true cause-and-effect or a true-true-but-unrelated phenomenon?

Comments

[Roz]

The frequency or infrequency of PET and CT scans is a big issue with lymphoma survivors. The medical standard now seems to be not to give them routinely to patients without symptoms or reasons to be concerned. Patients are concerned about too much radiation if the tests are given and not early enough intervention if they are not.

[Wendy S. Harpham, MD]

Dear Roz,
Your comment highlights one of the challenges physicians face. Physicians walk a tight-rope when ordering treatment: They don't want to overshoot, ordering more treatment than was really needed to get a good result. But they don't want to undershoot either, ordering too little to get a good result.
So, too, with diagnostic scans. They don't want to overshoot, ordering too many scans that expose the patient to the risks. And they don't want to undershoot, deciding to "watch and wait" instead of "evaluate," and possibly miss a window of opportunity for the best outcome.

When you are the one writing the prescriptions, it is a lot of responsibility. And the correct choice isn't always easy to know ahead of time. It's easy to look back and say, "We should have..." or "We should't have..."

Healthy Survivors work with their physicians, so that no matter what happens, everyone says, "Given all we knew at the time, we did the right thing."

With hope, Wendy