Behind the Numbers:

Christina Lefante, MPH, CTR, LTR Registrar and Cancer Survivor

The first thing that went through Christina Lefante's mind when she was told that she had Hodgkin Lymphoma was, "I think I'm going to die. I think that's the first thing that would go through anyone's mind. I had just turned 18. It was the end of my senior year of high school. It was the day before my senior prom."

That diagnosis began a whirlwind of what Tina calls craziness -- doctor's appointments, six months of chemo every other week, and after a short break, a month of radiation every day. It also began her introduction to cancer statistics. Her father, a biostatistician, explained that a 95% 5-year survival rate meant that 95% of the people diagnosed with her type of cancer were alive five years later. When her world seemed to be blowing up, that reassuring statistic gave her some sorely needed perspective.

As you might imagine, Tina's cancer diagnosis changed her life. It also laid the groundwork for her future career, even though it took her a while to realize it. "I was going to be an artist, and I did study art in college. My undergraduate degree is in print-making. There’s not much you can do with lithographs, so I taught art for two years at a local high school. I realized that teaching wasn’t for me. Ever since I was diagnosed, though, I've been interested in survivorship issues. I went through a period when I was searching internally, asking what am I supposed to do now. When I was talking with my parents about the kinds of things I thought I might like, my father said, 'that sounds like public health'. I decided I wanted to study epidemiology and to see if they’d take a print-maker/art teacher."

When she finished her MPH, Tina began working at LSU Health New Orleans School of Public Health. That was 12 years ago, right after Katrina. And that job led her to her calling – as a cancer registrar. She has been collecting data at LSU Health New Orleans School of Public Health’s Louisiana Tumor Registry since 2009. It is one of the 18 population-based cancer registries that make up the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program, which is considered to be the authoritative voice about cancer in the United States.

"From my father, I heard that if you really want to make change, you need to collect the underlying data. I think that’s what drove me into public health. You know, you can’t just go out and march down the street and assume something’s going to happen. We have to find out what we’re fighting for, and data collection answers that question."

Today, Tina is a certified tumor registrar and a follow-up and special studies coordinator. She follows thousands of cancer patients from the time they are diagnosed until they die -- from whatever cause, including old age. It is part of survival data, crucial to learning about the unique issues cancer survivors experience to either prevent or address them. Since more people are surviving cancer these days, research studies are increasingly focusing on their needs.

"Since we are a SEER registry, we are required to follow everyone from our reference date of 2000. Anyone diagnosed from 2000 onward, we have to follow for the rest of their lives. That means that every year, I have to update each individual’s status."

She gathers information from a variety of sources, including death certificates. "For those individuals the state says died of cancer and we have nothing in our records, we have to follow back, and that's one of the ways we do case finding, one of the ways we catch cases that may have slipped through the cracks."

She also coordinates the Tumor Registry's participation in special studies conducted by the NCI and the CDC. Some of these studies seek more detailed information about care for certain cancers, and some focus on cancer survival, such as finding out about long-term effects of cancer treatments, and others investigate the effectiveness of prevention efforts.

Tina recently worked with the CDC on a follow-up study about cancers associated with the human papillomavirus (HPV) – cervical and oral cancers. Ten years ago, the original study documented the HPV strains found in cervical cancers. The follow-up study seeks to find out whether there is has been a change in them in the ten years since the HPV vaccine has been available.

"I had to request tissue samples from pathology labs from cases in our database. The samples came to me in paraffin blocks, which I sent to the lab for processing. I sent the results to CDC so they could do their typing. We're awaiting the CDC’s results, but it's those types of studies where we start to learn about why and how and what things are happening based on basic registry data."

Typically, the CDC or NCI recruit several cancer registries to get a cross sectional analysis of what's going on in the country. "A new study is a Virtual Tissue Repository to see if we can work as the honest broker between pathology labs and researchers. We are one of seven participating registries, including those in Iowa, Kentucky and Utah."

Even though she has found her purpose, the complexity and importance of her work is often unrecognized.

"You hear on the news, oh the cancer rates in the US are going down, and no one ever sits back and figures how they came to that. Well, they came to that because they looked at all the states' cancer registries' data. That means something."

It's even harder to explain what she does for a living. The conversation Tina and her brother had about her job with an acquaintance last Christmas ended like this.

"Uh, cancer?" the acquaintance finally asked. To which Tina replied, "Yep, cancer." At which point Tina’s brother chimed in, "And she’s not just a registrar, she’s in the registry!"

The end of April will mark the 21st anniversary of her cancer diagnosis. For Tina, this is more than a job. That it is so personal is what drives her passion to every day tackle the mammoth task of collecting the highest quality data on cancer incidence rates and survival – the data that enables the change that saves lives.