Lois Schuyler is the picture of health. Nearly two years after
completing treatment for ovarian cancer, her hair has grown back and
her strength returned. At age 70, she is lean, vibrant -- and
confident that many healthy years lie ahead.
Few ovarian cancer patients can lay claim to such optimism. More
than half its victims die within five years of diagnosis, including
three-quarters of those whose cancer has spread. But Schuyler's
disease was caught early, vastly improving the chances that surgery
and chemotherapy could eradicate it.
Schuyler, of Tiverton, was lucky: She enrolled in a study testing
a new method for detecting ovarian cancer in its early, more
treatable stages. Among the 3,200 participants, she was one of five
whose cancer was discovered -- all at an early stage.
Studies are still evaluating whether the new method can save
lives, and for now it's available only to women enrolled in a
clinical trial.
But when researchers from the M.D. Anderson Cancer Center and
Women & Infants Hospital presented their results in May, they raised
hopes that within a few years doctors will finally have a life-
saving screening test for this deadly cancer.
Schuyler, a nurse, had just retired as director of student health
at Roger Williams University a few years ago when she mentioned to
her gynecologist that, despite her excellent health, she had one
worry: ovarian cancer. Her grandmother had died of it.
Although ovarian cancer is rare -- accounting for about 3 percent
of all cancers in women -- it inspires great fear. Cancer in the
ovaries grows quietly, deep within the abdomen, producing no obvious
symptoms. As a result, three-quarters of ovarian cancers are already
advanced by the time they are discovered, and survival rates are
dismal.
Unlike cervical and breasts cancers, Schuyler's doctor had no
recommended screening test he could use to check for ovarian cancer.
And unlike uterine cancer, her own body would not give early
warning signs.
But Schuyler's doctor did have an option for her. He handed her a
brochure about an ovarian cancer screening study. Led by the M.D.
Anderson Cancer Center, in Houston, the study has an arm at Women &
Infants Hospital, in Providence, where Dr. Richard G. Moore, a
gynecological oncologist, has been researching better ways to detect
ovarian cancer.
The method employs no expensive scans or fancy new devices.
Instead, it relies on one of the world's least exciting disciplines
-- statistics. Through a step-by-step procedure called the Risk of
Ovarian Cancer Algorithm, or ROCA, it improves the usefulness of the
CA-125 blood test.
Many women learned of this test after comedienne Gilda Radner
died of ovarian cancer in 1989. Her husband, Gene Wilder, urged
women everywhere to get tested to see if they have elevated levels
of CA-125, saying it could save their lives.
It is true that high levels of CA-125 can indicate the presence
of ovarian cancer. But other conditions besides cancer can cause CA-
125 to go up, and it doesn't always increase in women who have
cancer. Routine screening of CA-125 levels could send legions of
healthy women toward costly, risky and unnecessary testing --
without saving any lives.
Enter Steven Skates, a biostatistician at Massachusetts General
Hospital who developed the algorithm used in the study. Skates
studied data from clinical trials that measured CA-125 annually in
thousands of women, including the few who eventually developed
ovarian cancer. He observed that each woman has her own CA-125
pattern and that, even without cancer, levels of CA-125 fluctuate.
The trick is to distinguish normal fluctuations from an increase
caused by ovarian cancer, and to do so as early as possible, Skates
explained. His system calls for more frequent testing when CA-125
rises in a small minority. That helps doctors discern when a woman's
CA-125 level has deviated from her own normal pattern and could be
signaling cancer.
When she read about the study, Schuyler jumped at the chance to
be tested, even though she knew there was no guarantee it would
help. She was one of 3,238 postmenopausal women who signed up; they
were all age 50 to 74 and had no significant family history of
breast or ovarian cancer.
Women in the study had yearly blood tests for CA-125. Based on
those results, they were divided into three categories. More than 90
percent were low-risk women who continued to get annual blood tests.
A small intermediate-risk group showed slow increases in CA-125
levels and came back for a blood test every three months. An even
smaller high-risk group (just under 1 percent a year) experienced a
sudden spike in CA-125 or increases above their normal fluctuations.
Lois Schuyler had very low CA-125 levels for three consecutive
years. Then, suddenly, in 2008, her CA-125 soared. She immediately
fell into the high-risk group; that meant she needed a transvaginal
ultrasound. She was among 85 women (2.6 percent) over the course of
the study who underwent an ultrasound. For 77 of them, the
ultrasound found nothing worrisome.
But for Schuyler and seven others, the test showed a cyst or a
mass.
An ultrasound, however, cannot tell whether the bump is
malignant. All eight women underwent surgery to remove at least one
ovary. Three had benign tumors. Two had borderline tumors that had
not become invasive. And three had invasive but early-stage ovarian
cancer.
Schuyler was in the last category, with stage 2 cancer. Moore
performed a complete hysterectomy, removing both ovaries and the
uterus. Schuyler then endured six three-week cycles of chemotherapy.
She found the chemo extremely tough, but bounced back quickly,
returning to the tennis courts two months after it was over.
"I feel incredibly lucky and just grateful to Women & Infants,"
Schuyler said last week. "When you are healthy you don't even think
about what resources are available. We are so fortunate to have
Women & Infants. You don't appreciate it till you need it."
A striking result of the ROCA study was the extremely low rate of
"false positives" -- test results that find a person ill when in
fact she isn't. That's critical for ovarian cancer because it is
rare and only surgery can identify it for sure.
An ovary cannot be biopsied -- it has to be removed. (A biopsy
might rupture the ovary, which could spread any cancer in the
abdominal cavity, or it might fail to capture the cancerous piece,
giving a false result.) And surgery can have serious complications,
including bleeding, infections and blood clots.
"It's an invasive procedure and there are complications," says
Debbie Saslow, director of breast and gynecologic cancers for the
American Cancer Society. "And the complication rate is almost as
high as the chance of finding cancer."
The ROCA study showed a possible way to find more ovarian cancers
early while keeping the risk of needless surgery to a minimum. (The
results were reported at a meeting in May. They are available only
in summary and the full manuscript has not yet been published.)
"It is a glimmer of hope," said Dr. Daniel Clarke-Pearson,
chairman of the Department of Obstetrics and Gynecology at the
University of North Carolina School of Medicine and president of the
Society of Gynecologic Oncologists. "It certainly sounded very
favorable." But he noted there was no comparison group to show
whether patients who'd had routine exams would have had the same
rate of detections.
The study doesn't answer other important questions. For one,
since some women can have ovarian cancer without an increase in CA-
125, it's not yet known whether any cancers were missed. Only time
will tell -- and the study is continuing.
More important, this study doesn't show whether this method of
screening can save lives -- which is, after all, the point.
"It's very promising," says the cancer society's Saslow. "But
with ovarian cancer, unfortunately, we need the proof of saving
lives."
That answer is coming in about three or four years. A large study
in the United Kingdom has enrolled some 200,000 women to see if
screening can prevent death. The women are divided into three groups
-- some screened with the ROCA approach, some getting ultrasounds
only, and some getting no screening at all. By following so many
women over years, this study will be able to tell whether either
screening method reduced the number of ovarian-cancer deaths.
"Both of those trials detected early ovarian cancers much more
frequently than we do now," said Moore, the Women & Infants
researcher. "The thing we don't know, does that improve survival?"
Logically, Moore said, early detection should reduce deaths.
Not necessarily, Saslow cautions. "There's a strong school of
thought that there's a chance that stage one ovarian cancer is an
entirely different disease," she said. It could be that some stage
one cancers do not grow beyond the ovary and can stay put without
affecting a woman's life, Saslow said.
Moore doesn't ascribe to that school of thought. "We know that
early stage will normally advance to later stages," he said. "They
will eventually spread and be a problem."
As for Lois Schuyler, she has little doubt that the ROCA
screening method saved her life. She's had her CA-125 checked every
three months since completing chemotherapy, and the levels remain
low.
"I have a lot of energy. My life is normal. I feel great," she
says. "I really feel I'm going to be OK."
KEY POINTS
Ovarian cancer
Rare but deadly
- Accounts for 3 percent of cancers in women, but is fifth-
leading cause of women's cancer deaths.
- A woman's lifetime risk is 1 in 71.
- 70 to 80 percent of ovarian cancers diagnosed after they have
spread.
- If cancer is confined to ovary, 5-year survival rate:
93.5 percent.
- If cancer has spread widely, 5-year survival rate:
27.6 percent.
Challenges for detection
- Cancer grows in ovaries with no symptoms or only vague ones.
- Increases in CA-125 can indicate cancer, but CA-125 does not
increase in half of stage 1 cancers and one-fifth of advanced
cancers.
- Pelvic exams rarely detect ovarian cancer.
- Ultrasound can detect masses but not whether they are benign or
malignant.
- Ovaries cannot be biopsied; they must be removed.
What women can do
- Know your family history; 10 percent of ovarian cancers are
linked to a genetic mutation.
- Birth-control pills used for at least five years can cut your
risk.
- See your doctor if these symptoms are unusual and persistent:
abdominal bloating; pressure or pain in pelvis; difficulty eating or
feeling full quickly; frequent or urgent need to urinate.
- To inquire about enrolling in the ROCA study of a new screening
method, call 274-1122, ext. 7112, or e-mail CA125@wihri.org.
Lois Schuyler, of Tiverton, was in a study for early detection of
ovarian cancer. She thinks the testing may have saved her life. The
Providence Journal / Frieda Squires ffreyer@projo.com / 277-7397
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