SHE HAD THE SURGERY nine years ago, before people spoke in public of having breast cancer. She discovered the lump at a time when women were so overwhelmed with fear and horror of the disease that they unquestionably abandoned themselves to the wisdom of the surgeon, not knowing how they would come out of the anesthetic.
"I was not given a choice," she recalls now. "When I went in I had a node and the doctor was sure it was not malignant. And this part is inexcusable: I had the biopsy and then went into his office to get the results, and he had not called ahead of time to find out. He got on the phone while I sat there. I saw his mouth drop and he hung up and said you're going in right now."
She had the most disfiguring of operations, the radical mastectomy, or Halsted method, in which the breast, lymph nodes and chest muscles were removed leaving an enormous incision and a depression extending from the clavicle to below where the breast used to be.
It was an operation invented 80 years ago when women showed up with lumps the size of lemons and advanced stages of breast cancer. It was done to her nine years ago for a lump that was much less than half an inch in size.
"I didn't know where were the [surgical] methods," she says."I was so scared when he said you're going directly hospital that my emotions took over. I didn't have any intellect.My husband got on the phone and said 'Do we have any choice?' and the doctor said no.
"That wasn't true. What I heard was that it was easier and cleaner to get the whole thing out. To work around the muscle requires more time. It's easier to cut it all out and then go on, so the older surgeons prefered doing it that way. I don't think it had anything to do with prolonging the life of the patient, especially when the muscle is not even involved. That really blew my mind.
"Every now and then I get angry, but then here I am nine years later. If I could change anything, I would keep the muscle, which is what they call the modified radical, I would also insist that the cut across rather than up and down so I could have reconstructive surgery. I didn't even know implants existed then."
The woman speaking is active in education in her community, a mother of two, holder of advanced degrees in economics. She believes she was the victim of unnecessarily disfiguring surgery, performed that way by a doctor more for his con-convenience than for her health. And she beleives that the medical barbarism was compounded by psychological abuse, such as when she inquired about the malignancy spreading to the other breast and was told it was a "simple medical procedure" to remove that one too.
In actions taken last week, the National Cancer Institute panel first took steps to recommend against the radical mastectomy and to urge, instead, that merely the breast and some lymph nodes be removed. It also found that treating breast cancer simply with radiation or excising the tumor are methods that seem to be producing good results in early tests.
Second, the panel recommended to the American medical community that women undergo surgery in two stages, a significant move to remove some of the psychological trauma involved in breast cancer.Specially, the panel recommended that biopsies be taken of lumps to determine if they are malignant. After a thorough study of the tissue with tests taking several days, the doctor can then discuss with the patient how a malignancy if it exists should be treated. She has time, then, to prepare herself emotionally for the certainty of breast removal.
This is far different from the dreaded situation in which women go into the hospital to have a lump removed. Although at least 80 percent of the lumps are benign, the women don't know if they are going to come out from under the anesthesia with a small Band-Aid or an entire breast removed.
Dr. Joseph Allegra of the Cancer Institute says the two-stage process has medical as well as psychological benefits. "It is possible that as we better define the biology of breast cancer that . . . by tests . . . We'll be able to say one type of tumor has good prognosis and one has a bad prognosis and we can get into less radical operations than the masterctomy . . .You certainly don't hurt the patient by waiting a couple of days."
"We seem to be moving toward more lesser surgery," Allegra says. "The whole basic concept behind this is if you can preserve her breast and take out the tumor, that's major gain medically. That's very exciting if you could do that."
As a result of greater patient awareness of the disease and more sophisticated detection methods, Allegra says, 85 percent of the women who had breast cancer in 1977 first showed up for treatment with the disease in early stages. "For that reason, people now believe you can do a much more localized operation," According to a 1950 survey by the American College of Surgeons, radical mastectomy was performed in 70 percent of the American women with breast cancer. In 1977, that figure dropped to 21 percent while the number who had the modified mastectomy went from 5 percent in 1950 to 58.7 percent in 1977.
The panel recommended the two stage procedure very much at the insistence of Rose Kushner, the only woman and only lay person on the panel. Kushner had a mastectomy and wrote a book about it and now runs an information service for breast cancer patients. Back in 1974, before women questioned much about breast cancer surgery, she went to extraordinary legal steps to make sure she would first have the biopsy and then be able to take her time to find out what to do about any malignancy found.
"Women who wake up to find a breast gone, I can't imagine what is must be like," she says. "I've talked to enough women to know it must be horrible.
"The anticipation is worse than the fact. Once you know where you stand and you've looked into the options and you've picked what you've picked, you can live with it. All nonsense about living with one breast is not the problem, especially with the reconstruction . . .especially when you consider the alternative."
The Cancer Institute panel's recommendations last week are clear indications to women and to the medical community that breast cancer surgery should not be as disfiguring as it has been in the past.
Further the panel is establishing that breast cancer surgery should be less psychologically traumatic than it has been, that the women must be informed and consulted before the breast is removed, that she has a right to help decide her destiny with all the medical facts before her.
Breast cancer surgery may finally be getting a little less barbaric.