Debate Heats Up
On Defining
A Cancer Survivor
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
March 24, 2004; Page D4
Who should be considered a
cancer survivor? Now that more people are living many years
after diagnosis, the debate over how to define a survivor is
heating up.
It used to be that someone
who had completed treatment and was still alive five years
after diagnosis was considered a survivor. But this definition
has changed in recent years. In the national action plan for
cancer survivorship being released next month by the Centers
for Disease Control and Prevention and the Lance Armstrong
Foundation, survivors are defined as anybody who has ever been
diagnosed with cancer -- no matter if the diagnosis was
yesterday or 20 years ago.
The Office of Cancer
Survivorship, which is part of the federal National Cancer
Institute, defines a survivor as someone who finished his or
her cancer treatment at least six months earlier -- when it
comes to spending research dollars.
Lisa R. Diller, an
oncologist at the Dana-Farber Cancer Institute in Boston, says
that a cancer survivor used to be someone who is no longer
undergoing treatment such as radiation, chemotherapy or
surgery. "But this may not be a valid definition any longer
either," Dr. Diller added.
New treatments such as
Gleevec or tamoxifen are frequently given to patients
chronically or for years, even in instances where they may
technically be considered cancer-free by their doctors.
Further fogging up the
definition: Family members, friends and caregivers of someone
living with cancer are now commonly being called survivors.
The change in the way the
community defines itself may ultimately change the way cancer,
and those living with it, is studied. Many research projects
have been done retrospectively, where survivors are
interviewed years later about their experiences during the
early days of the disease.
"We think people should be
studied and followed from the time they are diagnosed," says
Doug Ulman, who survived bone cancer and melanoma and is now
director of survivorship at the Lance Armstrong Foundation.
"Otherwise it is difficult
to validate data about what happened to someone five years
ago."
It may also lead to better
ways to identify people most at risk for side effects and
future health problems, and better prevention interventions.
For the cancer community,
finding the right term has been tricky, and remains an ongoing
debate. Some people don't like the word survivor because it is
so closely associated with the Holocaust or victims of violent
crime such as rape. They point out that people who have heart
attacks are not called "heart attack survivors."
Rochelle Shoretz, 31 years
old, was diagnosed with breast cancer in 2001 and has been
told by her oncologist that she is now considered
"disease-free."
But because she still takes
the drug tamoxifen in order to lower her risk of recurrence,
"I find it difficult to embrace the term survivor. There is
still medication in my body. Can you really consider yourself
a survivor when breast cancer is still so much a part of your
life?"
Write to Amy Dockser Marcus
at amy.marcus@wsj.com2
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