Gina Kolata’s must-read article, “The Scan That Didn’t Scan,” in last week’s Science Times points out vast differences in the quality of MRIs as well as vast differences in the expertise of the radiologists who interpret them.

Patients need to understand this, because physicians sure as Hades aren’t going to tell you.

Kolata uses sports injuries as examples. With suspected cancers, the stakes are life and death.

One of the first physicians to almost get my teenage daughter killed was the well-intentioned local radiologist who assured us that the odd lump on her left forearm was “probably not” cancer, although he could not specify exactly what it was.  Due to location of the tumor (near the ulnar nerve), the radiologist recommended that we NOT have the bump removed. “Don’t worry, mom….”

Based on the radiology report, the dermatologist likewise recommended that we NOT have the lump removed unless we had access to an expert surgeon (which we did not, or thought we did not), so he simply dropped the ball on the referral.  He just quit.

My daughter finally insisted that it be removed because it was not behaving like a cyst — this despite the orthopedist at the county hospital having brushed aside her concerns, his near warp-speed exam preceded by a several hour wait in the waiting room.  (There is nothing quite like a 30:1 wait:exam time ratio to convince you that you are indeed an idiot, wasting the doctor’s time, overreacting to a minor medical anomaly.)

Then came the dreaded “Whoops!” scenario so familiar to sarcoma patients — an excisional biopsy done without benefit of prior testing. This would be akin to a surgeon removing a lump from a woman’s breast without benefit of a needle biopsy. The tumor is cut open, with no margins. (See Fritz C. Eilber, MD, and Frederick R. Eilber, MD, “Surgical Management of Soft Tissue Tumors: Avoiding the Pitfalls.” American Society of Clinical Oncology 2005:940-942).

The lump was a malignant peripheral nerve sheath tumor (mpnst), a sarcoma or soft tissue cancer.

Fortunately, the orthopedic surgeon who removed the lump — after assuring me with a smile, “Don’t worry, mom. How long has this been here?” — was an expert (albeit at sports injuries, not orthopedic oncology) and a good guy.  He did not disappear after the “Whoops!”  Instead, he spoke with Dr. Sharon Weiss at Emory University Medical School,  acknowledging that he had been unaware that sarcomas could sit for a decade or more, indolent (looking like cysts) before they took off. And the tumor, almost imperceptibly, had begun to take off.  Instead, he called around the country to help us find the right medical specialists.

After weeks of agonizing debate, her team settled on a conservative re-excision, sparing the nerve, insuring quality of life,  putting her life at higher risk.

Whither the MRI?

The initial MRI was the only baseline image which her oncology team had to grade the tumor before it had been cut open.  Besides tissue analysis, grade of tumor is determined by size, depth and firmness of the mass. Grade determines treatment, meaning that my left handed child, an accomplished violinist, might never use her hand again should the next surgeon decide to cut.

A physician at a university medical center finally explained that the films were junk. Useless due to poor quality. A joke, almost.

Although the radiology departments at two widely respected children’s hospitals were good, the radiology department at UCSF was excellent. So excellent, their more comprehensive scans revealed cysts on her palm, meaning possible (but not probable) local metastasis.

Thus began a new nightmare.  A needle biopsy risked permanent damage. The UCSF radiologists were indeed experts, but by then we were afraid to trust anyone (a common side effect of sarcomas). Nonetheless, we decided not to hunt that particular dog — AFTER ascertaining from an experienced ACOR list member (a physician) that UCSF indeed had an excellent radiology department.

There are several lessons to be learned.

First, as Kolata points out, there are vast differences in the quality of MRIs as well as vast differences in expertise of the radiologists who interpret them.  The MRI is the key element in the referral and decision making process.

Second, there is no substitute for research and patient proactivity. None. Nor, given the fractured state of health care in the United States and the flailing economy, is there any substitute for e-medicine for cancer cases in terms of speed, research capability and candor.

Third, organizations like the American Cancer Society and the Lance Armstrong Fund need to take the lead in getting the word out about klutzy MRI’s. This is unconscionable.

As a further insight, the wife of my daughter’s high school biology tutor, head pharmacist at a local hospital, informed us that in decades past that my daughter’s case would have automatically been referred to a major university medical center. Now, given local oncology facilities, insurance companies force the patient to beat his or her way through the local medical scene, making referrals to genuine centers of expertise for ordinary people difficult if not near impossible.

The locals may be fine for diagnosis and treatment of the Big Four cancers, but they ain’t fine for pediatric cancers and/or rare cancers which present as suspicious lumps and bumps. For this, they can be fatal.

It would be different if physicians were to openly admit the limits of their expertise, but that is not how the American medical system works.

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