Rare Finds: A Rare Cancer Diagnosis

Finding specialized care is worth the effort for patients with uncommon cancers.
For 18 months before her rare form of cancer was diagnosed, Connie Alexakis and her doctors wrote off a series of frustrating symptoms to other maladies.

First, she experienced intense all-over itching, so constant that she called in an exterminator to search her home for bugs. When none were found, she figured it had something to do with the Chicago environment, as the itching vanished when she moved with her husband to South Carolina in July 2012. By the time the itching erupted again, in August 2013, her doctors blamed hormones, considering she had given birth to her daughter six weeks earlier.

Connie Alexakis (right) has undergone aggressive treatment for late-stage bile duct cancer. Along with her husband, Jerell Chua (left), and daughter, Olympia Chua (center), Alexakis is hopeful that the treatments will succeed in keeping the cancer at bay. Photo by Rachel Fesko. 

A period of relief followed until December 2013, when she again began to itch, along with exhibiting another worrisome sign—her skin and eyes were turning yellow. Even then, Alexakis and her husband, a family physician, thought it might be a drug reaction, as she was taking an influenza medication. It wasn’t until New Year’s Eve last year that numerous tests revealed she had cancer of the bile duct, or cholangiocarcinoma, a disease that develops in at least 2,000 Americans every year. The rare malignancy, which had spread to the nearby liver, was stage 4.

At 32 years old, feeling sleep-deprived from caring for an infant, Alexakis acknowledges that she was a bit in denial about the stakes involved, until she asked her oncologist how long she might live if she put off treatment. About three months, he responded.

Since then, Alexakis and her husband have pursued a battery of chemotherapy and radiation treatments and second opinions, encountering the challenges of access and time common to any rare malignancy.

Individuals with rare cancers particularly benefit from team-based care, in which the oncologist, surgeon and other specialists closely coordinate. Diane Reidy

One out of every four cancers in adults is considered rare, according to an analysis of United States cancer data published in 2010 in the journal Public Health Reports. As Alexakis learned, a rare cancer might result in a delayed diagnosis, which in turn results in acute time pressure to identify and track down medical care from a more limited pool of specialized physicians.

Patients in urban areas can have an easier time, because they are more likely to live near a National Cancer Institute designated center, says Diane Reidy, a medical oncologist at New York’s Memorial Sloan Kettering Cancer Center who cares for patients with neuroendocrine, adrenal gland and other rare malignancies.

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