Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, January 26, 1993 TAG: 9301260136
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE: ANNE GEARAN ASSOCIATED PRESS
DATELINE: RICHMOND LENGTH: Long
RADICAL DECISION, NO REGRETS
Dorothy Ellis' four daughters grew up keeping their mother's secret. The horrible scars on her chest were kept covered, and little was said about her disease in an era when breast cancer was considered somehow shameful."No one really discussed it with us, and there was no support out there for her in 1963, when she was diagnosed. She was young and isolated really, and very embarrassed," said Judi Ellis Odato, 46, of Richmond.
Nearly 20 years after Dorothy Ellis died of the disease in 1971, her two eldest daughters were diagnosed with breast cancer within a month of one another. As they began months of painful surgeries and chemotherapy, the two younger sisters became convinced their only hope of avoiding cancer lay in removing their breasts before the disease struck.
"Many people would consider that decision shocking," said Lauran Ellis, 34, of Richmond. "But they aren't in my family - they didn't watch their mother die from a horrible disease and watch as people I loved suffered."
The older Ellis sisters - Odato and Mary Jo Ellis Kahn - had both breasts removed, and doctors have told them they are free of cancer. They will be closely monitored to try to detect the cancer quickly if it returns, as happened with their mother.
Critics and supporters both say prophylactic mastectomy - the removal of healthy women's breasts in hopes of avoiding cancer - is a drastic decision.
Although there is no way to measure the number of women who undergo the surgery each year, some doctors say it is an increasingly frequent option.
Candidates for the surgery typically have high incidence of cancer in their families and feel, as the Ellis sisters did, that they have no choice.
"I have no regrets at all," said Charlynn Ellis Ross, 39, of Charlotte, N.C. She had the surgery a few months after her sisters were diagnosed in 1989.
Lauran Ellis had her breasts removed last summer, after doctors agreed noncancerous abnormalities in her breasts coupled with her family history made the surgery worth considering.
Doctors did not push the surgery on either woman, they said.
"Amputation ought to be unacceptable, but as long as the research fails to give us answers there are few alternatives," for women who believe themselves at extremely high risk, Odato said.
"Breast cancer is more than a disease, it's the fear of a disease. For women living in fear of getting cancer, this can be relief," said Bonnie Campbell, co-founder of My Image After Breast Cancer, a national advocacy group.
Breast cancer kills 46,000 American women annually, according to the American Cancer Society, which takes no official position on prophylactic mastectomy.
Researchers say the incidence of breast cancer appears to be increasing. Although detection and treatment are improving, American women are as likely to die from the disease as their mothers were.
The American Cancer Society and the National Cancer Institute say one in eight women will get the disease, although many other experts call this figure misleading. Because there is no national list of breast cancer patients, the true incidence rate cannot be calculated.
The disease does appear to run in families, and women with a history of it are at some increased risk, doctors say.
"Of course I was very aware of why my mother died, and that I was at higher risk. But somehow I didn't ever really think I'd get it," said Kahn, 43, of Richmond.
The little white speck showed up on a mammogram taken just before Kahn's 40th birthday. Odato felt a lump two weeks later.
"At first we were all just so shocked and grieved," Ross said. "A couple of weeks later I began to wonder what all of this means for me."
After several discussions with doctors and her family, Ross decided on prophylactic surgery.
"Like any young woman, my breasts served a function for me. I had nursed my children - they were part of who I am as a woman," Ross said. "But I had no problem getting rid of them. . . . They were a threat to me and I just wanted them off."
Her husband was supportive, even eager for her to have the surgery, Ross said. Her young children, having seen their aunts sick and bald from chemotherapy, understood her decision, she said.
"I did not try to hide anything from them. I showed them my bandages and said, `This is going to keep me from getting breast cancer.' "
In truth, pre-emptive surgery may not remove all the risk. Some women have developed the disease after surgery, doctors say.
"That would just be so hard, if after I went through all of this I got it," said Ellis. "But I'm pretty confident now, I just feel so much better to have gotten those time bombs off my chest."
The sisters' father and many other relatives and friends questioned the decision.
"To them it was really, `Why would you want to do something like this?' " Ellis said. "I said I'm not going to live my life waiting to get cancer."
Both Ellis and Ross had to convince reluctant insurance companies to pay for the surgery, which can cost $20,000 to $25,000, including reconstruction.
All the sisters are active in breast cancer education and advocacy groups, including the Virginia Breast Cancer Foundation, which formed out of a support group Kahn and Odato joined after surgery.
The women say they are angry that in the years since their mother's death, the mortality rate for breast cancer has not improved.
"True, treatment is better, and we live longer. But still one out of two women will die after getting it," said Kahn. "We have a 50-50 chance. That's not too great."