They came from all over the world, these specialists in that most dreaded cancer of women -- cancer of the breast -- which strikes some 120,000 American women every year and kills about a third of them.
They gathered at the National Institutes of Health to help an American panel establish new consensus guidelines about standard adjuvant treatments -- those treatments that are added to initial surgery and radiation.
The adjuvant treatments are designed to kill the microscopic seeds of cancer that may still be present in the system after the primary cancer is surgically removed. These seeds maintain the potential for recurrence of the cancer in other parts of the body.
Based on research developments since the first conference of its kind in 1980, the panel of scientists, clinicians and representatives of the public sought to determine if there was a way to guide oncologists and patients alike in selecting therapies that are most effective and most appropriate for individual breast cancer patients. For many patients there is no way to tell absolutely if those cancer seeds -- called "micrometastases" -- are present, although some old and new tests offer clues.
For two days, the panel was bombarded with technical and statistical information on an assortment of drugs and hormones in seemingly endless combinations, to be administered sometimes by mouth, sometimes by injection for varying periods of time, often tailored for fine variances in the patients' cancers.
Nevertheless, although conceding that there are still no cures, nor even optimal therapies, panel members were able to distill a few general recommendations. Among them: Certain postmenopausal breast cancer victims -- perhaps 27,000 a year -- would benefit significantly from hormonal therapy involving the anti-estrogen product tamoxifen. This statement was dubbed an "attitudinal revolution" in American medical practice by Dr. Michael Baum, a British oncologist who has conducted tamoxifen trials for more than a decade.
"Americans made up their minds about the benefits of chemotherapy too early," Baum said, and most adjuvant therapy in this country has involved the use of so-called cytotoxic drugs. These drugs kill cancer cells throughout the system, but kill healthy cells as well, causing a cascade of side effects that are often harsh but rarely life-threatening.
Baum's position -- and that of other tamoxifen researchers -- has been largely publicized here by Rose Kushner, a breast cancer victim (on tamoxifen therapy) who has played an active role in translating the so-called "alphabet soup" of cancer therapies into forms enabling a patient to make an informed choice, most recently in her newly updated book "Alternatives." For premenopausal cancer patients, generally those under the age of 50, the panel concluded that when there is some indication of spread of cancer cells to nearby lymph nodes, "adjuvant chemotherapy can now be considered standard care." Cytotoxic chemotherapy is a major research subject and widely used anticancer tool. The panel cited "highly significant increases in disease-free survival and a significant reduction in mortality."
"I thought," said Nancy Bruning, another breast cancer patient, "that the statement was extremely reasonable."
Bruning, who at 37 is four years past the discovery, treatment and (nine-month-long course) of adjuvant chemotherapy for her breast cancer, has written a book, "Coping with Chemotherapy," a step-by-step manual for chemotherapy patients.
But as important as Bruning believes her own chemotherapy to have been -- and, she says, she would opt for it again if she had it to do over -- she says, "I would like nothing more in my modest little way than to see the way cancer chemotherapy is given completely changed.
"The doctors talk about 'no significant side effects,' but this means to them that you won't drop dead of an infection. But they don't really tell you . . ."
Her hair, for example: "I found out that three of the drugs in my regimen had hair loss listed as a side effect, but the doctor said, 'Oh, but you have so much, you probably won't even notice.' Then he suggested I might want to cut some of it, so I cut it from all the way down my back to shoulder length. That wasn't what he meant. He really meant short short.
"It was after about the fourth treatment that I was taking a shower and suddenly I had this sickening feeling that my whole scalp shifted. More than half of my hair came out all at one fell swoop, and worst of all, it matted, like a rat's nest, and I had to figure out what to do with it."
Then, she recalls, there was the nausea, the being tired all the time -- and, she says, "when you're tired, you lose your identity because who you are depends so much on what you do. You don't look like yourself, you don't feel like yourself, you don't act like yourself."
There is often depression -- in addition to the stress of knowing you have cancer, there is reason to believe the drugs themselves may have depressive effects. Many chemotherapy patients experience menopause-like symptoms -- hot flashes, cessation of menstrual periods, loss of libido and vaginal dryness. Some suffer weight gain, although Bruning did not.
For some, says Bruning, these symptoms can be traumatic. "Here you are, a woman," she says. "They've probably lopped off your breast, you have no hair, you look like hell, you feel like hell, you can't enjoy anything you eat and you're still fat."
There continues to be great controversy over breast cancer treatment, especially because progress comes in increments rather than breakthroughs, but one issue virtually all speakers agreed upon was the need for more patients to participate in clinical trials approved by the National Cancer Institute.
Only 3 percent of American breast cancer patients are treated in trials at this time, but, said panel chairman Dr. John H. Glick of the University of Pennsylvania Cancer Center, "patients are not doing themselves a disservice by participating in a trial, but are helping themselves as well as others, and if you don't get the trials going sooner, we're not going to have the answers to the questions as soon as we'd like."
"Alternatives" by Rose Kushner. Warner Books Inc. $4.95. 438 pp. The bible for breast cancer victims, describing Kushner's metamorphosis from patient to tireless patient advocate and public member of the National Cancer Advisory Board.
"Coping With Chemotherapy" by Nancy Bruning, Dial Press, $15.95, 316 pp. Subtitled "How to Take Care of Yourself While Chemotherapy Takes Care of the Cancer," the emphasis is on what will happen during adjuvant chemotherapy and how to get through it. Good glossary of which drug does what and causes which side effects.
For general information on cancer and on approved clinical trails and for the booklet "What Are Clinical Trails All About?" write the National Cancer Institute, Office of Cancer Communications, Bldg. 31, Room 10A19, Bethesda, Md. 20892. Phone (in metro area) 636-5700, or 1-800-4-CANCER, elsewhere.
Breast Cancer Advisory Center, Rose Kushner director, P.O. Box 224, Kensington, Md. 20895.
American Cancer Society, D.C. Division, 1825 Connecticut Ave. NW, Washington, D.C. 20009. Booklets and information about support groups are available. 483-2600.