When Sally O'Neill's doctor told her she had an early form of cancer in one of her breasts, she didn't agonize about what she wanted to.
The 42-year-old mother of two young girls wanted a double mastectomy.
"I decided at that moment that I wanted them both taken off," says O'Neill, who lives in a suburb of Boston. "There wasn't a real lot of thought process to it. I always thought, 'If this happens to me, this is what I'm going to do.' Because I'm not taking any chances. I want the best possible outcome. I don't want to do a wait-and-see."
Today, 10 years later, O'Neill has no regrets about what most people would consider a radical decision. And as it turns out, she was at the leading edge of a trend.
O'Neill had ductal carcinoma in situ, or DCIS. The number of women who get double mastectomies because of DCIS is small — around one in 16 women (see accompanying chart). But the rate has doubled in the past 10 years.
DCIS is an abnormality that most specialists call "stage zero" breast cancer — on a scale of 1 to 4. In many cases it doesn't ever progress to invasive cancer, the type that can be life-threatening.
These women are in a very different position than actress Angelina Jolie,who recently chose to have a double mastectomy. She has a gene mutation that gives her a very high risk of breast cancer. Research shows many of the women choosing double mastectomy have the same diagnosis as O'Neill, not Jolie.
The debate over appropriate treatment for DCIS is part of an even bigger debate about what many specialists call the "over diagnosis" of cancer, especially cancers of the breast, prostate and thyroid.
This means the discovery of growths that look like cancer but are not destined to cause the patient a problem if they go untreated.
The National Cancer Institute recently convened a group to look at overdiagnosis and overtreatment of cancer. JAMA, a journal of the American Medical Association, last week published a summary of its conclusions.
Overdiagnosis is a product of widespread screening programs that look for cancers before they cause symptoms, on the assumption that early treatment will invariably reduce the chance that a cancer will kill. There's growing evidence that's not necessarily true.
Routine mammography and PSA screening for prostate cancer are thought to reveal many malignancies that wouldn't show up otherwise. And many doctors worry that a federal task force's new recommendation to increase screening with CT scans to look for early lung cancer will also lead to overdiagnosis.
Stepping back further, the issues of cancer over diagnosis and overtreatment are part of an even bigger concern about unnecessary medical care. It's a problem NPR intends to explore in coming months as part of a series we're calling "Less Is More." The series will focus on situations when less treatment may actually be better for patients.
DCIS is a touch point of the over diagnosis debate. Nearly 70,000 women are diagnosed with it each year. Before mammography screening, only about 3 percent of breast cancers were DCIS. Now the condition accounts for about a third of all "breast cancers."
The reason for those quote marks is that, while most cancer doctors view DCIS as a very early stage of breast cancer, a growing number say it really shouldn't be called "cancer" at all.
DCIS is an overgrowth of cells within the lining of a woman's milk ducts. Such growths are not dangerous unless and until they break through and invade other breast tissue and ultimately spread to lymph nodes and other organs.
"Many of these precancerous lesions are not going to go on to become cancer," says Dr. Laura Esserman, a breast cancer surgeon at the University of California, San Francisco. "I don't think we should label it as cancer. I think we should call it a 'ductal lesion.' I think people would be much more willing to be calm about it."
We'll come back to Esserman's ideas about how woman and their doctors should address DCIS. But first, let's go back to Sally O'Neill; her case capsulizes the dilemma.
Her decision to have a double mastectomy, even though she had DCIS in only one breast, was so radical that the first surgeon she consulted refused to do it without a letter from a psychiatrist. "His exact words were, 'You're cancer-phobic,'" she says.
So she found a different surgeon, Dr. Kevin Hughes at Massachusetts General Hospital. When it comes to treating DCIS, Hughes errs on the side of caution.
"We don't know what percent are not deadly, and we have no idea which patients do or do not have a deadly form of cancer," Hughes says. "So as a surgeon I need to treat every cancer as if it might be deadly, because I don't know which ones are and which ones aren't."
Hughes does not advocate removing a healthy breast that doesn't have any DCIS. But he'll do it if he thinks a woman wants it for the right reasons.
"If they want to take the opposite breast off to never experience breast cancer again, that ... is a good reason to do it," Hughes says. "If they are taking their opposite breast off so they will live longer, that's not a good reason to take the opposite breast off."
This is a critical point. Many women — perhaps assuming all breast cancers are dangerous — may believe that removing the healthy breast after a diagnosis of DCIS improves their chances of survival.
But DCIS is nearly 100 percent curable. Typically, the treatment is a small operation called lumpectomy, often but not always followed by radiation to the area. (About a quarter of women with DCIS have a single mastectomy, usually because the abnormal growth occupies too great a percentage of the breast to make lumpectomy feasible.)
The chance of DCIS later appearing in the opposite breast is not precisely known, but is thought to be well under 1 percent per year. And Hughes points out that if DCIS does appear in the second breast – or even if invasive cancer turns up –it would likely be highly curable, too.
"We normally find it at a very early, very curable stage," Hughes says. "We very seldom have patients die from cancer in the opposite breast."
Some say concern about survival is not the only thing that's driving some women to seek a double mastectomy.
Patients may be distressed about the experience of breast cancer diagnosis and treatment and have a "very strong aversion" to going through it again, Seema Khan of Northwestern University writes in a commentary in the Journal of Clinical Oncology.
Whatever their reasons, some patients and some doctors are pushing back against what they consider too much treatment for DCIS.
Peggy MacDonald of Portland, Ore., is one of those patients. She was stunned after she recently got a diagnosis of DCIS and discovered that all the doctors she saw thought she should have surgery to remove it — right away.
"Quite honestly," she says, "I just didn't like the options being presented to me. It didn't ... make sense to me."
None of the surgeons recommended that MacDonald should remove her healthy breast, but all agreed she should have surgery. She was almost ready to give in when one of her sisters sent her an article quoting Esserman, the San Francisco breast surgeon.
MacDonald made an appointment to see Esserman and discovered a different approach.
"She said, 'OK, I've looked at your MRI, I've looked at your mammograms, I've looked at your blood tests. Here's what I will tell you — this is not an emergency and you have options,'" MacDonald says.
Esserman stresses there's no need for women to rush into surgery after a DCIS diagnosis.
"I think we all need to take a step back and not be so hysterical," Esserman says. "When I see people who've been told they've got to make a decision within two weeks, that's just crazy! No one has shown a progression [from DCIS] to invasive cancer in a two-week period of time — ever."
After seeing Esserman, MacDonald decided not to have surgery, at least for now. Instead, the doctor put her on hormone suppression therapy. McDonald now takes a drug that blocks estrogen. Because her DCIS cells are fueled by estrogen, the hope is that once they are starved of the hormone the cells will shrink and perhaps even disappear.
MacDonald says she realizes she may end up needing surgery anyway, but if so she'll be clearer about the decision.
She's hoping her case will turn out like another of Esserman's patients, Barbara Mann. Mann took an estrogen-blocking medication as well, for six months. Today, an MRI scan and biopsy show no trace of DCIS in her breast.
"It's amazing," Mann says. "It's not even a case of less-is-more. This is a case of less-is-best. I am just hugely relieved, absolutely thrilled. And what I would really like is for every other woman in my position to know this is an option."
But it's an option that will require lifelong vigilance. Anyone who chooses not to have surgery will have to be watched carefully and have routine mammograms and maybe even MRI scans and biopsies.
And women who choose this alternate route must be willing to live with the risk, however tiny, that DCIS might return, and might turn into invasive cancer.
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