Image by Sarah MacReading
Erica Calcagno was in her bedroom when an intense headache struck. It was a familiar headache—one that had ravaged her daily for the past few weeks. But this time, her peripheral vision started to fade. Then her legs collapsed beneath her.
In February 2015, fourth months before the headaches started, Calcagno was diagnosed with Stage IV Invasive Lobular Carcinoma, the second-most common form of breast cancer in the United States. She was told the cancer had traveled to her lymph nodes, her liver, and her bones. She was 36.
But instead of pursuing the traditional routes for treatment—surgery, radiation, and chemotherapy—she spent two weeks at a private clinic in Tijuana, which offered a variety of treatments rarely administered in the United States: a compound known as cesium carbonate, infusions of vitamin C, a variety of immune boosters, and the drug Laetrile, sometimes referred to as vitamin B-17, which was declared illegal by the Food and Drug Administration (FDA) after the National Cancer Institute found it was ineffective and could cause cyanide poisoning.
Calcagno's decision to seek treatment outside of the United States is not unique. An estimated 1.4 million Americans will make the same choice this year, and the Centers for Disease Control (CDC) believes "medical tourism" will show extreme growth over the next decade.
Some, like Calcagno, will end up outside of the country due to general mistrust of American doctors (Calcagno feared treatments like chemotherapy were toxic). Others, failed by the traditional methods, will travel seeking experimental, alternative medical practices. While the procedures and medications are often less expensive than those offered in US hospitals, patients must pay for medicine, surgery, and travel expenses out of pocket, which can spike the total cost, sometimes astronomically.
According to Patients Beyond Borders, a medical tourism guidebook published in 2007, patients spend between $3,800 and $6,000 per cross-border medical visit, including treatment costs, transportation, and accommodations. Still, cancer drugs in the US can cost much more—research from Memorial Sloan Kettering's Center for Health Policy and Outcomes shows the price of 30 newly approved cancer drugs rose to $10,000 a month or more between 2010 and 2014.
Medical tourism is not risk-free. The CDC cites complications like counterfeit or poor-quality medication, and poor blood screening that may result in diseases like HIV and hepatitis.
"One general issue that has been identified includes the fact that quality of medical practitioners is really unknown in many circumstances," Dr. Phyllis Kozarsky, a travel health consultant for the CDC's Division of Global Migration and Quarantine, told me. "There have been a number of infections disease outbreaks linked to medical procedures performed in other countries. Some procedures that are performed overseas are not approved in the United States or may even be scams. The same applies to medications."
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Still, Calcagno felt rejuvenated upon returning home from Tijuana. Following a holistic treatment, she'd put herself on a "detoxifying" diet and took a variety of supplements. At the time, she told me, "the treatment was working."
But after a second visit to Mexico in June 2015, she became unable to eat. She left her job to focus on her health, which continued to deteriorate. Then the day came where her headache was accompanied by a loss of vision. Within 45 minutes of asking her mother to take her to the hospital, her speech devolved into a garbled, slurred gibberish, until finally she was unresponsive.
"The doctors in the emergency room didn't know what was happening," Calcagno's mother, Marsha, told me. Having only been treated in Mexico, not a single American doctor had medical records of her cancer treatments, the state of her illness, or even her bloodwork. "They were flying blind, just going by what I say, and they could not calm her down."
Calcagno, only semi-lucid at the time, fought the doctors as they attempted to put her into an MRI machine. Eventually, in order to treat her, the doctors placed her in a medically-induced coma. They discovered Calcagno's cancer had traveled from her breast throughout her body; her failing speech, vision, and legs were from the cancerous tumor taking root in her brain.
Marsha authorized the administration of three rounds of chemotherapy and ten rounds of radiation. Calcagno woke up to the news three weeks later, disoriented and defeated. "My family made those decisions and they made them to try to save my life," Calcagno told me, but it was a route she never wanted to go down.
This March, Calcagno passed away, after battling her illness for 13 months. When I visited her last November, her legs had been sapped of most of their strength and she walked with a cane. The radiation and chemotherapy were not effective, she told me.
"It's no worse," she said. "It's just no better.
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"When it comes to getting cancer, we have learned in school that there are three major options: surgery, radiation, and chemotherapy," Kristen Bertone, a radiation therapist at Brigham and Women's Hospital in Boston, told me. The surgery is to remove cancerous cells; radiation "cleans up" cells the surgery can't reach, and chemotherapy can be used if the disease is more advanced or has spread to the lymph nodes.
Phil Ellison, an oncology nurse with a specialization in chemotherapy infusion at Massachusetts General Hospital, said he didn't learn much about alternative practices during his medical training. "We get some holistic therapy, we learn a little bit about meditation," he told me. However, he said that integrative therapies, like meditation, acupressure, and acupuncture, have been gaining more support. "We have patients who love it and continue to receive it after chemo," he said, adding that "there has been more traditional medical research on alternatives than there has ever been," including a 2009 study that found acupuncture was effective in managing nausea from chemotherapy and a 2014 study that suggested meditation could improve the likelihood of surviving illnesses like breast cancer.
Additionally, patients may want access to drugs and treatments that have not been approved by the FDA. Tania Sullivan, a radiation therapist at Brigham and Women's, recalls one young patient with cancer whose mother "didn't understand why we couldn't administer something that could prolong her life." The drug in question was not legal in the US, but anecdotal accounts and doctors outside of the country had declared its efficacy.
Calcagno's doctor in the US understood her desire for holistic practices, and did not try to change her mind. Having tried a variety of treatments—including both holistic approaches and chemotherapy and radiation—Marsha hoped that Calcagno would be a "testimony beyond testimony."
Ultimately, the cancer proved too advanced and too strong.
Months before Calcagno passed, Marsha sat across from her weakening daughter and said she believed that she would be an inspiration. "She can come back and hopefully open these doctors' minds to the alternative route of curing cancer," Marsha said. "Get them to think out of the chemical box."
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