Download The faces behind cancer statistics

The faces behind cancer statistics
By Laura Raines
Pulse editor
Sunday, November 16, 2008
Ever wonder how the Centers for Disease Control and Prevention and the American
Cancer Society get their cancer statistics? They come from cancer tumor registrars, who
work behind the scenes in hospitals.
They are trained to collect and report timely, accurate and complete data to state and
national cancer registries.
Photos by BARRY WILLIAMS / Special
Dolores McCord, manager of oncology analytics at Piedmont Hospital and a
certified tumor registrar, takes notes as a doctor makes a presentation during a
meeting to discuss a cancer patient’s care.
Dr. Vasily Assikis (left) presents a patient’s case during a meeting of the
oncology team at Piedmont Hospital in Atlanta.
“Their work is little-known, but critical,” said Kevin C. Ward, CTR, president of the
Georgia Tumor Registrars Association. “Cancer registrars bridge the gap between
cancer patients and the many researchers and health professionals who need access to
quality cancer data in order to make public health decisions related to cancer research,
diagnosis and treatment.”
People come to the job from various backgrounds. Debra Fortier, RHIA, CTR, oncology
data center coordinator for Gwinnett Medical Center in Lawrenceville, has experience in
hospital quality assurance and with medical records.
“I had been a supervisor, manager and then director for a hospital medical records
department and needed a change eight years ago,” Fortier said. “I knew of the registry
early on in my career and took the job at Gwinnett Medical.”
Fortier and her team review pathology reports, looking for key words that might pertain
to cancer. The data is downloaded into a database.
Cancer cases are assigned to a suspense file, where registrars begin collecting data
about diagnosis, staging and prescribed treatment. After the tumor has been staged, a
registrar will write an abstract to add the case to the cancer registry.
“We use a collaborative stage system that picks up every aspect of a tumor, including its
markers, size, lymph node involvement, estrogen-negative or positive receptors, how far
it [has] spread and margins,” Fortier said.
The registrars continue to collect information on patients through treatment and followup
care for the rest of their lives. Even after death, patients stay on state and national
registries.
Valuable information
After staging, registrars write an abstract with all the coded data and question-andanswer notes that include as much demographic and patient history information as
possible. Things like a patient’s age, race, family history of cancer, smoking history,
treatment outcome and complications are the kind of information researchers and others
use to study the disease.
“Seeing clusters of people with the same kind of cancer in one area can help identify and
solve problems,” Fortier said.
Gwinnett County, which started its registry in 1989, has almost 20,000 cases in its
databank, and the numbers are growing rapidly.
“Our team abstracted 1,500 cases last year,” she said. “The number of cancer patients
has doubled in the last 10 years in Gwinnett, because the county is growing. Our job has
gotten bigger.”
Fortier submits all abstracts to the state once a month and those go into the National
Cancer Registry once a year.
“We are constantly updating the data, and the standards and technology are constantly
changing,” she said.
The work is painstaking, detail-oriented and never ending, but Fortier loves it.
“I get to see the big picture of how each abstract feeds into the trends of what we know
about cancer and its treatment,” she said. “I’m a perfectionist, but I can see how
important it is to code everything correctly. We’re dealing with people’s lives.”
At Piedmont Hospital in Atlanta, Dolores McCord, RHIT, CTR, manager of oncology
analytics, is a certified tumor registrar and a member of the oncology team.
“My job is slightly different, but then there is no such thing as a traditional cancer tumor
registrar,” McCord said. “We come from medical records, pathology or administrative
backgrounds and we all have different skills and responsibilities within our hospitals.”
McCord makes sure that the hospital is in compliance with reporting standards, and her
office coordinates all oncology staff and committee meetings.
“At those meetings, the surgeons, oncologists, diagnostic radiologists and pathologists
look at the radiology films and pathology slides that my team gathers to make
recommendations about treatments,” McCord said. “Every specialist offers an opinion on
each case, because they want to make sure each patient gets the best care for his [or
her] circumstances.
“The director of oncology services relies on our data to help him plan oncology research
and budget wisely. Are there enough cases to justify a clinical trial, for instance, or
enough of one type of cancer to warrant buying new and costly radiation equipment?”
Making data work
Liver cancer is a growing specialty at Piedmont Hospital and the cancer data collected
by registrars helps administrators focus on getting the right doctors on the team and
providing the proper services.
“We’re now a referral center for liver cancers, because of our data,” McCord said.
McCord has found her spot in the field.
“I’ve worked with the tumor registry since 1989 and I love this work, because I do
something slightly different every day,” she said. “I find the disease process interesting
and I love statistics, so this is the perfect niche for me.”
When McCord started working on the cancer registry, there wasn’t much official training.
She started with a medical records correspondence course, learned on the job and
attended workshops.
Today, most cancer registrars have bachelor’s degrees and hold certification through the
National Cancer Registrars Association.
It’s a challenge to keep up with the changing rules, standards and technology.
“The registrar’s prayer is, ‘Oh Lord, please let me finish this abstract before they change
the rules again,’ ” McCord said with a laugh. “But I like the challenge and I can see how
what we do affects what the hospital does.”
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November 6, 2008
Registry helps track cancer mortality
This week, Carol P. Burke, cancer registrar at Pardee Hospital, is answering questions about cancer
registry.
Question: How many patients are diagnosed with cancer at Pardee each year?
Answer: On an annual basis, there are approximately 550 newly diagnosed cancers at Pardee
Hospital. This includes all cancers except for basal cell and squamous cell skin cancers. Melanoma
skin cancers are included.
Q: What are the most common types of cancer seen at Pardee?
A: The most commonly diagnosed cancers at Pardee are breast, lung, prostate, bladder and colon.
Typically, the cancers in those five sites account for more than half of the cancers we see annually.
Q: What is the purpose of having a cancer registry?
A: In most states, including North Carolina, a diagnosis of cancer is a reportable disease. This means
we are required by the state to report each new diagnosis to the North Carolina Central Cancer
Registry. There are other diseases that are reportable as well. Statistics generated from this reported
information provide us with excellent information on cancer incidence and cancer mortality by county
and for the state as a whole.
Q: What kinds of information are reported on cancer patients?
A: The data reported is strictly confidential. No patient names are reported to the state. Each patient
is assigned an accession number. High quality data is important, and we have standardized data sets
that we must adhere to for each patient.
Some of the information we report is smoking history, alcohol history, family history of cancer,
occupation, age at diagnosis, tumor site (where in the body was the tumor), tumor size, extent of
disease (has it spread to other parts of the body?), surgery details, chemotherapy, radiation, etc.
Once a patient's information has been entered into the registry, lifetime follow-up is conducted with
the patient. This is how we get our information to determine survival statistics. The same data
reported to the state also is reported to the National Cancer Database as required by the American
College of Surgeons' Commission on Cancer.
Q: How is cancer registry data used to improve cancer care?
A: The registry data is the driving force behind the data that shows improved survival statistics, stage
at diagnosis, treatment information, etc. If registries did not collect complete, accurate, high quality
data, as required by ACOS and the N.C. Central Cancer Registry, then the reliability of this data
would not be as sound as it is.
Q: What are some resources for cancer patients and their family members?
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A: We have put together a booklet of local resources available to all cancer patients. Copies can be
mailed or picked up here at the hospital. There are also printed and Internet resources at the Pardee
Health Education Center in the Blue Ridge Mall, as well as a cancer resource room, which contains
wigs, turbans, prostheses, etc.
Q: What are some of the risk factors for developing cancer?
A: There are some risk factors that cannot be changed, such as age, sex and family history, and
possibly some environmental exposures, such as chemicals. Very importantly, however, there are
risk factors that can be changed, including smoking, alcohol consumption, sun exposure and diet.
When you look at the different cancers separately, the risk factors vary depending on the site of the
cancer.
Q: Is any of the data that is collected published?
A: The hospital publishes an annual report includes some statistics, along with articles from members
of the cancer committee. Copies are available by calling the cancer registry office.
Q: What is a cancer conference?
A: On a weekly basis, as many as 25 physicians and nurses gather to discuss three to four newly
diagnosed cancer patients and to look at their radiology studies and pathology slides. The purpose of
these conferences is to have all of the disciplines involved in treating cancer patients together in one
sitting to offer advice on these patients, and it is also an excellent educational opportunity as well.
The public will have the opportunity to sit in on one of these cancer conferences on Thursday from
noon-1:30 p.m. at the Pardee Health Education Center in the Blue Ridge Mall. Jay Siltzer of WLOS
will be the moderator. If you are interested, register by calling 692-4600. If you have questions about
the cancer registry, call 696-1341.
Carol P. Burke is the cancer registrar at Pardee Hospital. In her role, she is responsible for reporting
the data to the state and national databases, coordinating weekly cancer conferences, quarterly
cancer committee meetings, and making sure that compliance with ACOS standards is accomplished
in order to maintain Pardee's accreditation.
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Web address:
http://www.sciencedaily.com/releases/2008/11/
081117153154.htm
Exercise And Rest Reduce Cancer Risk
ScienceDaily (Nov. 17, 2008) — Exercise is good for more than just your waistline. A recent study
presented at the American Association for Cancer Research's Seventh Annual International Conference
on Frontiers in Cancer Prevention Research suggests that regular physical activity can lower a woman's
overall risk of cancer – but only if she gets a good night's sleep. Otherwise, lack of sleep can undermine
exercise's cancer prevention benefits.
"Greater participation in physical activity has consistently been associated with reduced risk of cancer
incidence at several sites, including breast and colon cancers," said James McClain, Ph.D., cancer
prevention fellow at the National Cancer Institute and lead author of the study. "Short duration sleep
appears to have opposing effects of physical activity on several key hormonal and metabolic parameters,
which is why we looked at how it affected the exercise/cancer risk relationship."
Even though the exact mechanism of how exercise reduces cancer risk isn't known, researchers believe
that physical activity's effects on factors including hormone levels, immune function, and body weight
may play an important role. The study examined the link between exercise and cancer risk, paying
special attention to whether or not getting adequate sleep further affected a women's cancer risk.
Researchers assessed the association between physical activity energy expenditure (PAEE), sleep
duration and incidence of overall, breast, and colon cancer in 5,968 women at least 18 years old with no
previous cancer diagnoses. The women completed an initial survey in 1998 and were then tracked
through the Washington County Cancer Registry and Maryland State Cancer Registry for nearly 10
years.
The results pointed to a sleep-exercise link. "Current findings suggest that sleep duration modifies the
relationship between physical activity and all-site cancer risk among young and middle-aged women,"
he said.
Out of those 5,968 women, 604 experienced a first incidence of cancer, including 186 breast cancer
cases. Women in the upper 50 percent of PAEE showed significantly reduced risk of overall cancer and
breast cancer. Among women 65 or younger when surveyed and in the upper half of PAEE, sleeping
less than seven hours a day increased overall cancer risk, negating much of the protective effects of
physical activity on cancer risk for this group.
The next step, says McClain, would be to confirm current findings and investigate potential mechanisms
underlying the interaction between sleep and exercise in order to better understand their roles in cancer
prevention.
Research is expanding rapidly on the effect of insufficient and prolonged sleep duration on many health
outcomes although few studies have examined the association of sleep duration with cancer risk. This
novel study examining the interaction of sleep and physical activity suggests another future focus of
research on health behaviors and cancer outcomes.
http://www.sciencedaily.com/releases/2008/11/081117153154.htm
11/18/2008
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Adapted from materials provided by American Association for Cancer Research.
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American Association for Cancer Research (2008, November 17). Exercise And Rest Reduce Cancer
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/releases/2008/11/081117153154.htm
http://www.sciencedaily.com/releases/2008/11/081117153154.htm
11/18/2008
National Cancer Management Blueprint To Arrest Growing Cancer Cases
November 17, 2008 16:00 PM
KUALA LUMPUR, Nov 17 (Bernama) -- The country aims to reverse the growing number of cancer cases
and arrest emerging new ones through a comprehensive cancer management action plan by 2025.
For that purpose, Health Minister Datuk Liow Tiong Lai said, a National Cancer Management Blueprint for
the period 2008-2015 to streamline and rationalize the nation's fight against cancer, has been finalized.
He said the blueprint would be submitted to the Cabinet by end of next month for approval.
"Our vision is that by year 2025, cancer will no longer be a public health problem in the country," added
Liow.
He was speaking to reporters after opening the First Asia Pacific Conference on Health Policy and
Planning in an Era of Emerging Technology and Cancer here, Monday.
The minister said the blueprint also outlined strategies to effectively tackle preventable cancers, detect
potentially curable cancers at the early stage and effectively treat and rehabilitate, and offer optimum
palliation to terminally-ill cancer patients.
He said cancer was a major non-communicable killer disease in the country and based on the National
Cancer Registry, 30,000 to 40,000 of new cancer patients were reported annually.
Malaysians have among the world's highest rates of nasopharyngeal, laryngeal and cervical cancers.
"The estimated lifetime risk of getting cancer is one in seven for Peninsular Malaysian males and one in
six for females," said Liow.
Liow said the blueprint would also address other important issues related to cancer management such as
screening and early detection, diagnosis, equipment, information and ICT, funding and human capital
development.
"For example, we need to improve our human capacity development such as the number of oncologists.
Currently, we only have 39 oncologists in the country, when in actual fact, we need 200," he said.
On the ban on imported chicken from Thailand following the re-emergence of the bird flu scare recently,
the minister said no similar cases were reported in the country recently.
On another issue, the MCA vice-president called on party leaders not to be derailed from their pledges to
rebuild the party, following the party election last Oct 18.
"There is no time for us to put up any personal agenda besides the party's agenda," said Liow when
asked to comment on the public spat between the party's president and his deputy.
-- BERNAMA
http://www.bernama.com/bernama/v5/newsindex.php?id=372202