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Frightened by Your Doctor’s Recommendation?

It is your risk, so it is your responsibility to ask the right questions.

A healthy man in his fifties, Richard (not his real name), recently contacted me to discuss his concerns over a recommended diagnostic surgical procedure. He had been evaluated on multiple occasions over the last several years for bouts of severe abdominal pain that would come on rapidly, last a few days, and then completely disappear. Some bouts, the pain was in his lower right abdomen, while his upper left abdomen or the center of his stomach would be the focus of pain during other attacks. The pain was often accompanied by mild diarrhea and occasional nausea. Richard underwent multiple CT scans and MRI studies over the years, as well as upper and lower endoscopy (fiber optic scope visualization of the lining of his intestinal tract). The pain always went away following the administration of steroids (strong anti-inflammatory medications). Between bouts, Richard felt absolutely fine, was active, and remained in good health.

Richard’s demographics (gender and age), years of occasional symptoms, X-ray studies, and favorable responses to medications led to the diagnosis of sclerosing mesenteritis, a rare condition of the tissue sheet that carries the blood supply to and from the intestines. For unclear reasons, after a recent typical attack, Richard was referred to a surgeon, who strongly recommended a surgical biopsy of Richard’s mesentery (removal of one or more small pieces of tissue for pathological study). Surgical biopsy is commonly used in the diagnosis of sclerosing mesenteritis. More importantly, surgical biopsy is used to make certain that patients are not actually suffering from either of two other diseases with similar symptoms (but which are treated quite differently): intestinal lymphoma (a cancer) and carcinoid (a tumor which can be or can become malignant).

Here is the key point: Tests and procedures (both diagnostic and therapeutic) should only be performed when there is a high likelihood that the potential benefits outweigh the potential risks.

On the surface, Richard’s surgeon’s recommendation appears to meet these criteria. On the surface.

Let’s start with the potential risk. The surgeon shared that there was a small but real chance of the biopsy causing “significant bleeding” which would require an immediate, more invasive surgery. There was also some likelihood that the biopsy would reveal “nothing.”

And what about the potential benefits? This is where you may well understand much more about the value of the recommended test than does the physician who is making that recommendation. Why?

Physicians are dedicated, compassionate, and hard-working. But more and more, they are overwhelmed by their patient-load and work schedules. We can’t easily keep current on all of the new “best practices,” nor do we always have the time to perform a detailed review of all of the notes, X-rays, lab tests, and other documents in every new patient’s records (Richard’s medical record no doubt had hundreds and hundreds of pages).

Here is where you, as the owner of your body, as the owner of your health, must question a physician when you aren’t entirely comfortable with a recommendation. To do so does not require that you graduated from medical school (a point I routinely emphasize with cancer patients and their loved ones). But you do need to do some basic homework and understand the important questions to ask your doctor. And it is critical that you only gather knowledge from credible sources, from recognized medical experts (such as renowned medical center websites, not Wikipedia). Also, you must filter for information most specific to you (similar symptoms, test results, and treatment response; in the case of cancer and some other diseases, similar disease stage). Armed with this basic information, here are some revealing questions to ask your physician:

  • “What is the likelihood that what you are recommending will actually significantly alter my care?” This is the key question! You should rarely if ever undergo a test or procedure (regardless of risk) if the outcome of that test or procedure is unlikely to alter your care (or your understanding of your prognosis).
  • “What are the actual risks of what you are recommending, and how likely are those risks to be realized?”
  • “When is this the best time for this test/procedure to be performed?” Some tests and procedures are unlikely to be helpful if they are performed when a patient has no symptoms.
  • “Are there other tests that might give us the answer, and if so, what are the potential benefits and risks of those tests?” Different physicians are comfortable with different tests. Thus, it is always worth asking if there might be other tests or procedures that are as or more likely to provide the answer and/or more safely.

Richard rapidly learned from credible websites about sclerosing mesenteritis, other conditions with similar symptoms, diagnostic tests, and treatments. And Richard then appreciated what his very busy surgeon likely did not: the intermittent bouts over many years, the normal health between bouts, the and numerous X-rays and studies, the treatment response… all were consistent with sclerosing mesenteritis, and not with either lymphoma or carcinoid (both progressive, not intermittent, diseases).

Indeed, Richard’s surgeon (who is an excellent clinician) likely had only found the time to skim Richard’s medical record. He probably assumed that Richard had been referred because he had recently suffered his first bout of abdominal pain, with X-ray studies suggesting sclerosing mesenteritis (a reasonable assumption). In such a setting, a surgical biopsy might well have been an appropriate next step. Richard shared his medical story with the surgeon, who then agreed with Richard that neither lymphoma nor carcinoid tumor would likely have come and gone, with normal health over the years between bouts; nor would his pain likely have moved with different bouts; and (in reviewing the reports in detail) that the radiologists over the years had strongly felt that the CT scans and MRI studies were consistent with sclerosing mesenteritis. The surgeon acknowledged that for carcinoid tumor, non-invasive lab tests were frequently the first diagnostic test option, and that these had not been performed. Finally, the surgeon also agreed that a surgical biopsy the following week, given that Richard had been symptom-free for weeks, was unlikely to be of help.

After the discussion, Richard cancelled his biopsy, a decision supported by his surgeon.

The point of this story is this:

Your physicians are partners in your care, but they are not you. It is your body and your health and your risks. You should accept responsibility to ask, “What is the likelihood that what my doctor is recommending will actually significantly alter my care?” and “What are the actual risks of what my doctor is recommending?”

Own Your Health. After all, they’re also your potential benefits and your potential risks.