Healed: When the Patient Lives Every Time

Shirley M. Mueller, M.D.

Overdiagnosis can make medical statistics look better because the "cured" patient never had the disease in the first place. Shirley Mueller, MD, shares her own harrowing experience.

This year there has been a great deal of attention to overdiagnosis and how it can make medical statistics look better. This is because the patient who didn’t have the disease in the first place can be readily cured and make the numbers look better. Drs. H. Gilbert Welch, Lisa M. Schwartz and Steven Woloshin wrote a book about this entitled, “Overdiagnosed: Making People Sick in the Pursuit of Health” (2012).

The authors concentrate on breast cancer, prostate cancer and hypertension. But misdiagnosis or overdiagnosis can occur with other diseases as well. This is what happened, recently, to me, which is my personal confirmation that Welch, Schwartz and Woloshin are onto something.

My first career was as a neurologist. I did this for 24 years and never expected to be a patient until old age. But when my tests showed a pancreatic mass, I knew I had a terminal disease — 90% percent of those identified with the malignancy die within six months.

My problem began when abdominal pain started awakening me at night. A CT scan showed a pancreatic tumor. I was nonplussed and sure the more sensitive MRI would be negative. My doctor, a professional acquaintance for years thought this too, I believe.

However, when the report arrived in his office, things didn’t go as expected. My physician kept reading it over and over in front of me. The silence spoke for itself.

Finally, my physician handed me the report. The pertinent sentence was succinct, “There is a pancreatic mass, 3.4 by 3.3 cm.”

I was numb. My physician hugged me, a kindness I thought. Afterward, I sat in my car in the parking lot and called my husband who was seeing patients himself. Though he wanted to come home, it seemed pointless. Things weren’t normal, but maybe pretending they were would make the desolate situation better.

My doctor’s office made an appointment for me to have a biopsy within a few days. The only surgeon available was the fourth choice as the first three specialists either had full operating schedules or were out of town. The default physician gave me some consolation — he had gone to the University of Iowa’s medical school, which my husband and I also attended.

I was surprised, though, when the surgeon showed us a mass on the MRI that neither I nor my husband could see. But, since the radiologist had read it as such earlier, we thought we must be wrong and chose to trust the specialist. He would operate the following week. I was told that I could lose my spleen if the operation went badly.

In reality, there was a 14% mortality for the surgery he was suggesting. I thought to myself, “It might be higher for this operating doctor because he may not do many of this specific operation.” The rule of thumb is that unless a doctor does 25 or more a year of one kind of procedure, he isn’t sufficiently skilled to achieve a low mortality rate.

I made a decision not to make a decision about having the operation right away.

The following Monday morning, I called Sloan Kettering. Research on the Internet indicated it was one of the two best pancreatic cancer hospitals in the nation. The admitting person said there was a cancellation for Tuesday morning. My husband and I did not hesitate. We booked the next flight to New York City, sparing no expense. I have often thought how this would not be financially possible for so many people and that others wouldn’t be medically sophisticated enough to do what we did.

We took an early morning plane and arrived in NYC on time for my 11 a.m. appointment. The doctor did not see us until 5 p.m. and then only briefly with no examination. She said I needed another test.

By 6 p.m., when all of the other patients had left, I was drinking buckets of water to hydrate myself for a special CT scan. This procedure, called a 64 slice high contrast CT, took more pictures with greater resolution than the one in my home city of Indianapolis.

When the young radiologist came in to check my intravenous line during the CT, desperate to know what it showed, I shared with him that I was a physician and asked if he would tell my husband and me the results that night. He agreed.

About 7 p.m. we found him in the depth of the radiology area with great difficulty, something no one but physicians themselves would have been so bold to do. The radiologist seemed both confident and competent after reading so many of the same kind of test.

I was hoping to learn I had the less malignant kind of tumor, one that would provide three to five years, rather than three to six months of life. Instead the radiologist told us something for which we were totally unprepared — my previous reading was a mistake.

What was interpreted as a mass was really “volume averaging artifact with peripancreatic fat overlay.” He believed the real culprit for my symptoms was a small stomach ulcer found during an earlier endoscopy to obtain a pancreatic biopsy, which showed equivocal results regarding any cancer.

My husband and I made our way out of the tomb-like building that had been bustling earlier. It was at the end of rush hour, about 7:30 at night. Strangers were on their way home. I felt like I had just arisen from the dead.

Indeed, I had, but I was healed because I never had been really ill.