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May 24, 2002


Seven Years Later: Emory Patient With Rare Cancer Has Proven the Experts Wrong

Julie Whitehead 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 her treatment.

"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 to me."

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 University Hospital.

Attached is a fact sheet on DES taken from the National Cancer Institute Web Site (

DES: Questions and Answers (from the National Cancer Institute Web Site)

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 physical examinations.

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 this information.

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.

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