Nine years ago, Lois Lunsk had state-of-the art treatment for cancer in her thyroid, the gland that plays a crucial role in metabolism.
Today, her treatment would be called overzealous.
Following neck surgery to remove her thyroid and many lymph nodes, she was given a high dose of radioactive iodine capsules - double the current maximum - and spent three days isolated in a lead-lined room because she was emitting so much radiation.
"Now, patients usually go home within a day" of radioiodine therapy, said Lunsk, 66, who lives near Allentown and co-leads a support group for thyroid cancer patients in the Lehigh Valley. "I think it's good they're changing the guidelines. You don't want to have unnecessary surgery or treatment."
Lunsk's experience illustrates an ironic problem. As early detection technology outpaces the ability to distinguish innocuous cancers from dangerous ones, some fields of oncology are grappling with "overtreatment" and "overdiagnosis." In other words, treating cancer more aggressively than needed for a cure, or worse, treating tumors that would never cause harm if left undiagnosed. Because too much therapy can be as harmful as too little, this dilemma has led to debate and new advice, particularly in breast and prostate cancer screening.
But thyroid cancer experts recently took an unusually bold step to try to find a balance. An international panel of 24 thyroid pathologists in April said a subtype of the most common thyroid cancer is not cancer at all - they removed "carcinoma" from the name - and that the current standard of surgery and radioiodine is overtreatment.
The reclassified tumor is totally encased in a fibrous capsule. The tumor cells have abnormalities - subtle enough that pathologists often disagree in evaluations - but the cells haven't developed the ability to invade, a hallmark of malignancy.
'Why treat it like a cancer?'
Removing only the thyroid lobe containing the tumor is sufficient, concluded the experts, assembled by University of Pittsburgh Medical Center molecular pathologist Yuri E. Nikiforov.
They changed the name from "encapsulated follicular variant of papillary thyroid carcinoma" to "noninvasive follicular thyroid neoplasm with papillary-like nuclear features" - NIFT-P, for short.
" 'Carcinoma' suggests that the tumor cells have the capacity to spread beyond the thyroid into lymph nodes and to other parts of the body," said Miriam Lango, a head and neck surgical oncologist at Fox Chase Cancer Center. "NIFT-P's don't spread, and you cannot die from it. If a tumor doesn't behave like a cancer, then why treat it like a cancer?"
The revision, which has since been adopted by the World Health Organization, is expected to affect about 15 percent of thyroid cancer patients in Europe and North America, or about 10,000 of the 62,400 new diagnoses in the U.S.
Nikiforov hopes NIFT-P will spare patients the stigma of a cancer diagnosis.
"You wouldn't believe the stories I've heard," he said. "A patient with an encapsulated tumor was denied life insurance. Another couldn't donate blood. Another was removed from an organ transplant [waiting] list."
Toll of treatment
Located over the windpipe in the front of the neck, the thyroid is a two-inch-long, double-lobed organ. It uses iodine from digested foods to make hormones that regulate vital processes, including heart rate, blood pressure, body temperature and breathing.
Over the past 30 years, thyroid cancer incidence has steadily, sharply risen around the world. In the U.S., the rate tripled between 1975 and 2009.
While the reasons for the surge are many, the biggest, experts believe, is the use of ultrasound to evaluate thyroid lumps, or nodules. Up to 70 percent of people have nodules, and up to 20 percent turn out to contain cancer, studies show.
"My cancer was found by accident," recalled Suzanne Litzenberger, 37, of Emmaus. "I went for my annual gynecological appointment. My doctor felt my neck and said, 'There's a lump and I'm sure it's nothing."
Like most patients, Litzenberger had an early-stage papillary tumor.
Although early detection sounds prudent, cancer often defies that one-size-fits-all strategy. Autopsy studies have found thyroid malignancies in a third of people who died of unrelated causes. (Autopsies have found even higher rates of undiagnosed prostate cancer.)
When a small papillary tumor is diagnosed, doctors invariably reassure patients that it is highly curable.
Lunsk and Litzenberger - who co-lead the Lehigh support group - say such reassurance tends to downplay the toll of treatment. Surgery can cause vocal problems, while radioiodine contributes to salivary and dental problems, as well as increases the risk of secondary cancers such as lymphoma. When the whole thyroid is removed, patients need hormone replacement therapy, but finding the right dose can be difficult, and too much can cause heart arrhythmias, insomnia, weight gain, tremors, diarrhea, decreased bone density, and more.
"Doctors say it's the 'good' cancer to get, which we [patients] always get angry at, because the thyroid controls so many things," Lunsk said.
Said Litzenberger, "We joke that we're going to get a T-shirt that says, 'I have the best cancer.' "
In general, specialists have been advocating more conservative treatment of low-risk thyroid tumors - for example, removing half rather than the whole organ so most patients won't need hormone replacement.
Benefits of 'de-escalating'
"All management options should be discussed, including observing small nodules and cancer rather than treating all patients in the same aggressive way," Ralph P. Tufano, a Johns Hopkins University School of Medicine head and neck surgeon, wrote last year in JAMA Otolaryngology.
To evaluate the safety of conservative treatment of NIFT-P, the panel reviewed the records of 109 patients with encapsulated tumors. Most had partial thyroid removal, while the rest had total removal; none had radioiodine. All were alive with no evidence of disease 10 to 26 years later.
The panel stressed that adequate tumor sampling is essential to make sure the tumor is encased. If so, "de-escalating" management would have many benefits for patients, including saving the $8,000 cost of radioiodine, decreasing long-term monitoring, and "reducing the psychological burden."
"Thyroid is a 'good' cancer," Nikiforov said. "But there is no good cancer for a patient."