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Nightmare on Elm Street

The first round of HMO referrals on the neck lump produced nought but condescension coupled with chilling contradiction.

“I’m not sure.  Let me check with my (senior) colleague down the hall.”

“It’s a cyst.  We see those all the time.”

The next physician, a far more cautious general surgeon, said he would not touch the lump with a ten-foot pole, certainly not without a FNA (fine needle aspiration).  The surgeon supported referral to a tertiary care center for expert imaging and evaluation where specialists of equal expertise function as a team.  The insurance company refused the referral, however, directing her instead to a local orthopedic surgeon.

While dismissive of the lump — “We pop these things out all the time” — the surgeon also supported her request for referral to a tertiary care center.

Meanwhile, my friend’s “ammunition” in support of referral/best practices for suspicious lumps and bumps went unremarked by the insurance company.  The company agreed to her request for a certified case manager (who is legally mandated to act in the patient’s best interests, not in the financial interests of the insurance company), but denied her direct contact, frustrating communication.

Desperate, my friend began to resort to personal contacts.  She went “back door” to the regional medical director of the HMO.  While supportive, the director was unable to bypass the company’s policy of obstruction.

Exhausted, my friend finally self referred.  The insurance company won, however.  The family agreed to pay out of pocket.

Shockingly, the nightmare got worse, not better, the assumption being that communication among experts at a major medical center would be better rather than worse than that among local specialists.

The Realm of Experts:  Interdepartmental Spin

The oncology head and neck specialist at the tertiary care center 100 miles away said that he had never seen anything like her lump.  He recommended a FNA.  As is typical, the FNA came back inconclusive.

The oncologist referred the case to the head and neck neurosurgeon, but the referral got lost in the system.  Days turned into weeks as my friend frantically backtracked communication between the two departments, the specialists and their minions arguing over whose responsibility it was to lock down the referral.  (The answer: No one’s.)  

Oops!  A clerk had quit without notice, promising to fax the referral but not.

By then it was Christmas, Doctor was on vacation, and nothing could be scheduled until after the holidays.

Returned from winter break, the head and neck neurosurgeon refused to touch the lump without a more extensive CNB (core needle biopsy).  He did, however, advise my friend that removal of the lump would require cutting through tendons, resulting in permanent pain.

The mystery was solved at the very last stop in the spin cycle.  As my friend lay immobile on the exam table, awaiting the CNB, the radiologist went online, for hours consulting with a “niche” expert in Pennsylvania.  At last, a physician who did claim to know what the lump was! 

The radiologist tried to call a halt to the painful and expensive procedure, but by then it was too late.  The appointment had taken months to secure.  The family had lost faith in the medical system.  Plus, there were no guarantees . . .

Fortunately, the “niche” expert was correct.  The lump, a rare condition, was benign.  Still, it was outside the diagnostic experience of a major medical center, to say nothing of local specialists.  The insurance company caught up on payment by the time the CNB took place, but stiffed the family for the bill for the initial consult and FNA.


The above scrum exemplifies what one ACOR list member refers to as U-TADs:  Unnecessary Time Added to Diagnosis.  My friend’s case was a veritable train wreck of U-TADs.

She used every single device at her command — research, e-communities, inside and outside connections and sheer cash — to reach resolution in a reasonable time frame, but to no avail.  Her energy  sapped by fear and sleepless nights, her job threatened by endless medical appointments, her family began to fall apart.  The coup de grace was administered not by her boss or by her angry teen, however, but by a neighbor, a nurse and sister of a local surgeon, who scolded her for seeking outside expertise.  This was an insult.

All of which contributed to the patient’s sense of uncertainty.  Was this indeed “nothing,” an overreaction, or did the delay put her at risk for paralysis if not death?

This nightmare began in August and ended in January, nearly half a year later.  Had the lump indeed been malignant . . .  What were these doctors thinking?

Back to the Future: Women in the Spin Cycle

My friend is a member of a dual-income professional family, besides which she was backed by wealthy parents who guaranteed out-of-pocket expenses should the fiasco threaten to take her household under.  My own circumstances as a single parent are far different.  Divorce, poverty and the medical insurance crisis are not unrelated.  

My medical fate and that of my child was decided more than a decade earlier by a genial conservative judge in Pennsylvania who, all facts to the contrary, persisted in equating high education with high income.  This would be the same person who had to excuse himself from the bench to call his (stay-at-home) wife to confirm the high cost of infant care.  The experienced parent (as he assured us he was) who refused to even consider the costs of sick-care — as if he had never heard of ear infections in infants.

Unlike myself and my child, the judge was able to insulate himself from the spiraling trade-offs of single parenthood:  daycare versus rent versus sky-rocketing health insurance costs.  Deadlines and professional obligations versus the non-choice of tending a sick child.

Last week, uncomfortable memories hovering, I embarked on the familiar trail of phone calls.

To recap:  My journey began the first week of October, Breast Cancer Awareness Month, when I called Planned Parenthood for a free Pap smear and mammogram, put off due to expense (only five months, I tell myself).  The call was direct response to a conversation on the Pediatric Oncology list of ACOR on the necessity of caretakers, exhausted moms, looking to their own health in the dangerous months and years following their children’s cancer diagnoses.

Planned Parenthood directed me to a local clinic, the waiting room of which was packed with squalling infants and impassive mothers, many of whom did not appear to speak English.

“This will cover any breast-health related care,” the clerk assured me as she handed me my “card,” a xeroxed page displaying the name of a cancer detection program covering low income women over forty.  The title, “Every Woman Counts,” was queasily reminiscent of “No Child Left Behind.”  There was no contact number.

Previously, the radiologist had refused to refer the case for a second opinion or further diagnostic testing.  That could only be done the referring physician. 

Would his office please fax me a copy of the final report?

No, they would fax it to the GP but not to the patient due to concerns about confidentiality.  (?)

Would the clerk please send me the films on disc?

No.  I could pick up the disc in person.  They, would, however, send it to my GP.

The answering service pulled up my clinic records from the computer; an unknown doctor was the physician on record.  Retrieving the in-house number, I asked a clerk about getting a referral.  The physician who had performed the exam was there on a part-time basis only, she said.  She did not know when he would return.

I faxed her the Brody article with a message to to whatever physician was in charge with a request for a call back.


The referring physician (head of the clinic) had seen the article, she said, but refused to authorize a second opinion.  Only the radiologist could do that.

We had spun full cycle.

Unlike the women in the waiting room, I had an ace in the hole, the certified case manager who handled my daughter’s case, who informed me of a federal program that should cover the cost of the second opinion.

Yes, they had this program, said the clerk.  No, the physician would not authorize a second opinion.

Is a second opinion not part of Patient’s Rights (adherence to which is a condition for receipt of federal money)?

She would not know about that.

I faxed a note and copy of Brody’s article to my general practitioner, requesting that she call once she had reviewed the mammogram and reports.

Still waiting.

“Just go there,” advised a neighbor, a feisty waitress and fellow single parent, when I asked if I should pay out-of-pocket to see my GP. 

“None of this fax business.” 

This was how she had saved her own life when she was diagnosed with cervical cancer, at Stage I, not advanced.

Were the patient his wife, would the radiologist even take a chance on waiting six potentially deadly months?  I had to wonder:  Were any of the doctors in the system receiving a financial reward for NOT referring?

The representative at the state office which runs the cancer detection program confirmed that I was entitled to a second opinion.  If the original clinic would not request the referral, I could start all over at another clinic. (!)

One more head butt.  A clinic gynecologist took the call after reviewing the file.  He denied the referral, deferring to the radiologist.  At the same time, he refused either to reassure me or clarify his thinking.  (Was there really nothing to worry about?)  I was free to get a second opinion and pay for it on my own, he snarled, slamming the phone down.

I know the drill.  Front door.  Back door.  Call a politician.  Pay out of pocket.  Fall into debt — an exhausting reminder of how I ended up in this “free” program in the first place.  Meanwhile a letter arrives from the radiology office warning me to be extra alert, to NOT wait the six months should I experience a medical change. (Microcalcifications are undetectable by physical exam.)