Years Later: Emory Patient With Rare Cancer Has Proven the Experts
has shown a lot of doctors that they were wrong. She is proud of it,
and her doctors couldn't be happier.
In May of 1995, Ms. Whitehead
learned she had clear cell adenocarcinoma of the cervix. Dr. Ira Horowitz,
director of Gynecological Oncology at Emory's Winship Cancer Institute,
told her that the cancer was so aggressive she would probably die. On
Thursday (May, 23, 2002), seven years after she was told she would die
in a matter of months, Ms. Whitehead will visit Dr. Horowitz for her
100th chemotherapy session. There will be cake and a small celebration
on the floor of the Emory University Hospital where she will receive
"She is alive and well,"
says Dr. Horowitz. "Julie's attitude has played an important role in
her ability to fight this cancer. The chemotherapy has worked well for
her, but she deserves most of the credit. She is a fighter."
"When they told me this would
be my 100th cycle, I honestly didn't think that much about it," says
Ms. Whitehead. "My family and I don't take anything for granted any
more. I am thankful for every day I have, so every treatment is important
Ms. Whitehead was exposed
to DES (diethylstilbestrol) in-utero, or while she was in her mother's
womb. DES, a synthetic form of estrogen, was prescribed between 1940
and 1971 to help women who had certain complications with pregnancy.
Like thousands of women during that time, Ms. Whitehead's mother took
DES as prescribed by her doctor. In 1971, DES was linked to clear cell
adenocarcinoma in a small number of women who had used it during pregnancy,
and it was no longer prescribed.
In Ms. Whitehead's case,
the in-utero exposure resulted in the cancer that developed decades
later when she was in her 30's. The overall risk of an exposed daughter
to develop this type of cancer is estimated to be approximately 1/1000.
"My initial treatment back
in 1995 was with five weeks of radiation treatment, then the radiation
implants," says Ms. Whitehead. "I was told that the radiation was only
effective part of the time. When Dr. Horowitz told me that I qualified
for a clinical trial, I said I was interested since I really didn't
have anything to lose."
Ms. Whitehead's treatment
has been with Taxol, a type of chemotherapy. The purpose of chemotherapy
is to kill cancer cells or prevent their growth. All cells, whether
they are healthy cells or cancer cells, go through several stages of
growth. During one of the stages, the cell starts to divide. Chemotherapy
is used to stop the cancer cells from dividing and growing.
Ms. Whitehead has few peers
when it comes to the number of chemotherapy treatments she has had.
Side effects from this type of treatment can range from severe pain
in the limbs to fatigue. Ms. Whitehead says she has experienced numbness
in her feet and some pain in her arms and legs, but mostly she is just
very tired the day after she receives her treatment. "If there's something
going on that I really want to participate in, I go ahead and do it."
Dr. Horowitz says that she
is an inspiration to everyone. "Julie shows us the power of perseverance.
Her attitude and humility help all of us. She could be Teacher of the
Year to our med students."
"My main support group is
my family and friends," says Ms. Whitehead. "I don't know of too many
people who have had as many treatments as I have, so there aren't a
lot of other patients I can share experiences with. I am just thankful
for every day that I have."
Editor's Note: Ms.
Whitehead will be available to interview on Friday, May 24 at Emory
Attached is a fact sheet
on DES taken from the National Cancer Institute Web Site (www.cancer.gov).
DES: Questions and Answers
(from the National Cancer Institute Web Site) www.cancer.gov
What is DES ?
DES (diethylstilbestrol) is a synthetic form of estrogen, a female hormone.
It was prescribed between 1940 and 1971 to help women with certain complications
of pregnancy. Use of DES declined in the 1960s after studies showed
that it is not effective in preventing pregnancy complications. When
given during the first 5 months of a pregnancy, DES can interfere with
the development of the reproductive system in a fetus. For this reason,
although DES and other estrogens may be prescribed for some medical
problems, they are no longer used during pregnancy.
What health problems might
DES-exposed daughters have?
In 1971, DES was linked to an uncommon cancer (called clear cell adenocarcinoma)
in a small number of daughters of women who had used DES during pregnancy.
This cancer of the vagina or cervix usually occurs after age 14, with
most cases found at age 19 or 20 in DES-exposed daughters. Some cases
have been reported in women in their thirties and forties. The risk
to women older than age 40 is still unknown, because the women first
exposed to DES in utero are just reaching their fifties and information
about their risk has not been gathered. The overall risk of an exposed
daughter to develop this type of cancer is estimated to be approximately
1/1000 (0.1 percent). Although clear cell adenocarcinoma is extremely
rare, it is important that DES-exposed daughters continue to have regular
Scientists found a link between
DES exposure before birth and an increased risk of developing abnormal
cells in the tissue of the cervix and vagina. Physicians use a number
of terms to describe these abnormal cells, including dysplasia, cervical
intraepithelial neoplasia (CIN), and squamous intraepithelial lesions
(SIL). These abnormal cells resemble cancer cells in appearance; however,
they do not invade nearby healthy tissue as cancer cells do. These abnormal
cellular changes usually occur between the ages of 25 and 35, but may
appear in exposed women of other ages as well. Although this condition
is not cancer, it may develop into cancer if left untreated. DES-exposed
daughters should have a yearly Pap test and pelvic exam to check for
abnormal cells. DES-exposed daughters also may have structural changes
in the vagina, uterus, or cervix. They also may have irregular menstruation
and an increased risk of miscarriage, tubal (ectopic) pregnancy, infertility,
and premature births.
What health problems might
DES-exposed sons have?
There is some evidence that DES-exposed sons may have testicular abnormalities,
such as undescended testicles or abnormally small testicles. The risk
for testicular or prostate cancer is unclear; studies of the association
between DES exposure in utero and testicular cancer have produced mixed
results. In addition, investigations of abnormalities of the urogenital
system among DES-exposed sons have not produced clear answers.
What health problems might
DES-exposed mothers have?
Women who used DES may have a slightly increased risk of breast cancer.
Current research indicates that the risk of breast cancer in DES-exposed
mothers is approximately 30 percent higher than the risk for women who
have not been exposed to this drug. This risk has been stable over time,
and does not seem to increase as the mothers become older. Additional
research is needed to clarify this issue and whether DES-exposed mothers
are at higher risk for any other types of cancer.
How can people find out
if they took DES during pregnancy or were exposed to DES in utero?
It has been estimated that 5 to 10 million people were exposed to DES
during pregnancy. Many of these people are not aware that they were
exposed. A woman who was pregnant between 1940 and 1971 and had problems
or a history of problems during pregnancy may have been given DES or
a similar drug. Women who think they used a hormone such as DES during
pregnancy, or people who think that their mother used DES during pregnancy,
can contact the attending physician or the hospital where the delivery
took place to request a review of the medical records. If any pills
were taken during pregnancy, obstetrical records should be checked to
determine the name of the drug. Mothers and children have a right to
However, finding medical
records after a long period of time can be difficult. If the doctor
has retired or died, another doctor may have taken over the practice
as well as the records. The county medical society or health department
may know where the records have been stored. Some pharmacies keep records
for a long time and can be contacted regarding prescription dispensing
information. Military medical records are kept for 25 years. In many
cases, however, it may be impossible to determine whether DES was used.