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Home » e-Patient stories » In the Spin: Death by Referral

In October I recounted how my daughter was put through a spin cycle of referrals and medical misdiagnosis that nearly got her killed. The lump on her forearm that looked like a cyst was instead a deadly cancer.

The nightmare began at the local radiology practice, where my young teen, minus any warning as to specifics, was subjected to a long and agonizing MRI.  The nurse was surprised by my request to talk to the radiologist.  Nonetheless, she complied.  Thus came the infamous spiel, “Don’t worry mom. It’s probably not cancer . . . ”

Two weeks ago it was Groundhog Day — only this time I was the patient. Stunned and disoriented after being called back for a magnification mammogram, I listened as the radiologist (a different partner) briskly pointed to an area of increased calcification.  Me not quite understanding calcification (as in bones?).

When pressed, he stated the obvious:  microcalcifications could indicate a pre-cancerous condition, if not cancer.  He recommended follow-up in six months, after which I could return to the annual schedule.

I left in a daze.  What had just happened?

Genuine two-way communication it was not.  The radiologist was not happy when I informed him that the practice had previously misdiagnosed my daughter, with near fatal results.  Even more frightening:  The misdiagnosis was news to him.  Yes, we agreed, hers was a far more atypical situation (although breast cancers can be sarcomas, which he failed to point out). 

Nor was he happy when I asked if the situation called for a second opinion:  only the referring physician could do that.  As he ushered me out, he promised to look up Gina Kolata’s article on inept* MRIs which had appeared in the previous week’s Science Times, his body language screaming out that reading The New York Times was an unnecessary and time-consuming enterprise for a busy person such as himself.

* Patient did not actually say “inept.”

Should I be frightened?

The following week I received an unpleasant jolt from Jane Brody’s column, also in the Science Times (21 October 2008), advising women to take the initiative on breast health.  Brody presents a crystal clear summary of microcalcifications — in writing, no less, so the facts can be revisited when the fear has leached away.  “If instead of a biopsy [after a magnification mammogram] you are told to return in six months or a year for another mammogram, you’d be wise to seek a second opinion.”

Being an “activated patient,” I hit the Internet.  Turns out Sheryl Crow had ignored a similar recommendation, catching her breast cancer early.  Likewise a friend who caught her cancer at Stage II.  An educated and proactive blogger describes a scenario similar to Crow’s, posing the question:  What of low income women under similar circumstance?

I assumed two things after my daughter’s medical nightmare and my own warp-speed re-education.  First, I would know how to advise a friend in a similar situation so they could cut through the morass of referrals.  Second, the nightmare attached to my daughter’s cancer was in large part a function of low income and the financial disruptions endemic to a single parent household.

Last year I was proven wrong on both counts.  A friend discovered a strange lump on her neck, only to be put through the spin cycle with potentially lethal consequences.  The location was terrifying, C-2 C-3 on the spine, the gender dynamics familiar.  A social worker and conscientious mom, she had elected a less expensive HMO for herself.  Her child had the more expensive PPO.

She knew how to work the system, she assured me.  She did it everyday on behalf of her clients.  Inexplicably, she could not.  This is her story.