In his classic book, “The Wounded Storyteller: Body, Illness, and Ethics,” sociologist Arthur W. Frank observes from his experience as a cancer patient, “The physician becomes the spokesperson for the disease, and the ill person’s stories come to depend heavily on repetition of what the physician has said.”
He points out that doctors often rely on the record that follows a patient through the medical bureaucracy, rather than actively listening to the patient’s story. And he explores how patients shocked by a cancer diagnosis can “reclaim” the humanity of their own narratives from the data-driven exigencies of medical reporting.
Doing so is not easy.
Abigail Adams, whose name we are protecting at her request, is a 67-year-old professional who has lived in Marin since 1989. Two of her close friends have died from breast cancer, one after having a double mastectomy.
According to California Cancer Registry records, Ms. Adams has been diagnosed with breast cancer three times: in 2003, in 2005 and in 2007.
Telling the Light her story, Ms. Adams provided a copy of her medical records and transcripts of tape recordings she made during meetings with several of her doctors (with their permission). She requested a copy of her data from the state registry, which mailed her three abstracts called “confidential reports of neoplasm.” (Neoplasm is another word for tumor.) The abstracts are missing substantial amounts of information that are included in the medical records, and some data that did make it into the abstracts is wrong.
The 2003 abstract incorrectly states that she was diagnosed with an invasive cancer, failing to record that tests and doctor’s opinions that year indicated that the tumor was non-invasive.
Ms. Adams’s story began when she came down with a painful infection in her left breast, known as mastitis, an inflammation of the milk ducts that can bring extreme discomfort and high fevers. A mammogram revealed no evidence of breast cancer. The infection eventually cleared up.
In late 2003, a Marin doctor felt a “mass” in the same breast that had been infected and prescribed a fine needle biopsy. (Ms. Adams said that, like many women, she has naturally lumpy breasts.) The cancer registry interpreted the resultant pathology report as “suspicious for malignancy.”
A month later, Ms. Adams underwent a more aggressive excisional biopsy, called a lumpectomy. The official diagnosis was low-grade ductal carcinoma in situ, or D.C.I.S—not a cancer, but a tumor that can evolve into a cancer. (Medical science has so far found no way of predicting how or why this happens.)
The registry coded the non-invasive diagnosis as an “infiltrating ductal carcinoma, mixed with other carcinomas, in situ, low grade.” Unlike D.C.I.S., an infiltrating ductal carcinoma is composed of wildly proliferating cancer cells that inflame a milk duct and burst through its walls, invading the surrounding tissues. It is a dangerous condition that requires immediate treatment—and it was not Ms. Adams’s diagnosis.
After her lumpectomy and non-invasive D.C.I.S. diagnosis, Ms. Adams wanted to learn more about the potential virulence of the tumor. A prominent physician at a San Francisco hospital recommended a course of preventative treatment—just to be safe. But Ms. Adams did not wish to undergo preventative chemotherapy or radiation.
In 2004, she brought her biopsy result to two internationally renowned pathologists at two different medical practices. They independently found that not only was there “no evidence of invasive carcinoma” in the cells, but that the cells were merely “atypical.” Her biopsied cells resembled neither the misshapen, oddly spaced cells that are commonly labeled as D.C.I.S., nor the duct-packing, infiltrating monsters on the march.
Another physician whom Ms. Adams consulted at a local hospital wrote that her mammograms showed scattered, apparently benign calcifications in both breasts, “but no feature to suggest malignancy.”
How could the registry abstractor have erred so egregiously? In a number of ways, in fact. Coding protocol permits a registrar to record a diagnosis of cancer on the basis of a physician describing the cells as “suspicious,” even when malignancy is not confirmed by a pathologist. And because the registry does little or no follow-up after a first diagnosis is reported (however erroneously), it did not access medical records that negated the coding of an infiltrating carcinoma.
Ultimately, Ms. Adams consulted more than a half-dozen doctors at five different hospitals; her medical records were scattered, locked inside software systems that do not communicate. (Doctors rarely if ever report revised diagnoses or false positive findings.)
Relieved that she did not have cancer and blissfully unaware of the registry’s coding error, Ms. Adams opted to monitor the “atypical” lumps in her left breast. During 2004 and 2005, she underwent a series of mammograms and M.R.I.s, and a sonogram. Her medical record repeatedly notes “no suspicious findings,” although images of her right breast showed a region of slightly abnormally shaped cells. This was diagnosed as a “varix,” or enlarged vein.
In July 2005, a new physician interpreted the M.R.I. of the varix as a “worrisome” collection of calcified cells “demonstrating a non-benign pattern.” The doctor also said a mammogram taken the same day as the M.R.I. revealed scattered, benign-looking calcifications (dead cells) but no malignant features. A month later, he wrote that Ms. Adams was no longer “inconclusive” for breast cancer: she did not have the disease.
In an abundance of caution, he urged her to undergo a needle biopsy of her right breast. The procedure found atypical cells in 1 percent of a sliver of flesh. Despite her well-informed protest that this 1 percent ratio was not medically significant, the doctor pressed for an excisional biopsy to sample more cells. She demurred.
In early September, the hospital sent her a letter: “The results of your breast cancer imaging indicate that there are no signs of breast cancer.”
The registry recorded neither the good-news letter, nor the cascade of images and biopsies showing no signs of cancer.
When Ms. Adams’s doctors continued to urge her to get a lumpectomy of her right breast, she returned to one of the renowned pathologists. Reviewing the slides of her most recent biopsies and M.R.I.s, he reported “no suspicious area” and recommended against another surgical biopsy. “The problem with a new technology like M.R.I.s is that they see a lot of things that are not significant,” he observed.
The cancer registry did not record his finding.
Ms. Adams consulted a third physician about the biopsy slides and images. “I don’t know you very well,” the doctor said in a tape-recorded office visit, “but I care about you. If someone told me that I that had atypia, I wouldn’t be comfortable sitting on it. It’s a low probability [that it is a cancer], but why take the chance? I have seen women die from breast cancer; it’s not a pretty picture.”
The doctor said that while M.R.I.s do have a high rate of false positives, the only way to reduce her risk of cancer to near zero would be to extirpate the atypical cells with a lumpectomy.
A month later, she underwent the surgery.
The biopsy report declared that Ms. Adams had an “intraductal carcinoma, noninfiltrating” of intermediate grade—in other words, a non-invasive tumor. This diagnosis did make it into her cancer registry abstract, though with an incorrect date.
Based on the D.C.I.S. diagnosis, Ms. Adams’s doctor recommended that she get a mastectomy of her right breast, followed by radiation treatment. She turned to the pathologist; he did not feel she needed any form of treatment.
Presented with the expert’s advice, the physician reversed himself, agreeing that a mastectomy was unnecessary.
But, as she is inclined to investigate all angles, Ms. Adams visited a Marin doctor who specializes in radiology, who said she was not “comfortable” with the independent pathologist’s “wait and see” attitude. Ms. Adams’s breasts are “active” and needed to be “quieted down” with radiation or surgery, she said. Perhaps hoping to assuage her patient’s fear of overtreatment, she asked, “Do you know anyone who has had radiation therapy?”
“Not anyone who is still with us,” Ms. Adams replied.
Years later, she remarked on the irony that while most of her doctors explained that D.C.I.S. is not really cancer, they nevertheless recommended treating it as if it was a cancer that could be prevented by surgery, radiation and chemical and hormone therapies.
Continuing to decline the proffered treatment regimes, Ms. Adams showed up for semi-annual mammograms and M.R.I.s; those, along with a needle biopsy, found no residual D.C.I.S. The atypia in the right breast persisted, but the independent pathologist consistently counseled her against another complicated and expensive surgical biopsy.
In late 2007, however, she agreed to another. (The surgeon had to cut twice into her right breast, as the first time he left a surgical clip behind, she recalled.) This time she was diagnosed with a third case of D.C.I.S., which was duly recorded by the cancer registry. The independent pathologist concluded that the supposedly new collection of troubled cells was from the same set of calcified cells that had been previously biopsied, and that the persistent atypia was neither new nor dangerous.
But his expert analysis did not make it into the registry record, which continues to score Marin County with three separate cancer incidences, one incorrectly coded as invasive. Three cancers remain Ms. Adams’s official story.
And fear keeps her going back for testing, year after year.
Read part one here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-one-renee-willards-story
Read part two here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-two-climbing-risk-mountain
Read part three here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-three-marin-syndrome
Read part four here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-four-canary-gold-mine
Read part five here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-five-does-hormone-replacement-therapy-cause-breast
Read part six here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-six-perils-mammography
Read part seven here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-seven-life-and-death-marin-womens-study
Read part eight here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-eight-how-zero-breast-cancer-pays-its-bills
Read part nine here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-9a-bad-data-dirty-laundry
Read part ten here: https://www.ptreyeslight.com/article/busted-breast-cancer-money-and-media-part-ten-bad-data-audit-trail