LINDA WERTHEIMER, HOST:
This is MORNING EDITION, from NPR News. I'm Linda Wertheimer.
RENEE MONTAGNE, HOST:
And I'm Renee Montagne.
Today in Your Health, we begin an occasional series called Less Is More. It explores the idea that more health care may not be better health care. And as part of this, our science team has been learning about a condition called DCIS.
WERTHEIMER: It stands for ductal carcinoma in situ. It's controversial. Most cancer doctors view DCIS as a very early stage of breast cancer. But some say it really is not cancer at all.
MONTAGNE: It's being diagnosed much more often these days, and treatment is getting more aggressive, perhaps too aggressive at times.
Here's NPR's Richard Knox and Patti Neighmond with a look at the hard choices patients are facing.
PATTI NEIGHMOND, BYLINE: Let's start our story with Sally O'Neill. She's a single parent raising two girls in a suburb of Boston.
RICHARD KNOX, BYLINE: When I went to see her, she told me that 10 years ago, life was good. She was happy and healthy. Then she went to the doctor for a routine visit, and everything changed.
SALLY O'NEILL: I had my yearly mammogram, and that's when they found the microcalcifications in a circle. And they said that usually when they're in a circle, that means that there's something inside of it.
KNOX: O'Neill had a second mammogram, then a biopsy. It showed she had ductal carcinoma in situ. DCIS is a collection of abnormal cells found only in the milk ducts of the breast.
NEIGHMOND: Now, doctors differ on whether these cells should be called cancer or pre-cancer. But they do agree that they're only dangerous when and if they invade surrounding tissue. There's only a 10 to 15 percent chance they'll ever do that.
KNOX: O'Neill told me her surgeon suggested a lumpectomy to remove the abnormal cells. But he couldn't guarantee he'd be able to get all of them. It might take several operations.
O'NEILL: That was too much, and I thought, I can't do that. I've got kids at home that are little that need, you know, my attention, and I can't be going in and out of the hospital, and going through surgeries and all the stuff that comes afterwards, how sick you are.
KNOX: So this is when Sally O'Neill made what most would consider a radical decision. She wanted the maximum treatment she could get. She asked the surgeon to remove both of her breasts - the one with the abnormal cells and the one without them - just in case.
NEIGHMOND: You might be thinking now about the high-profile decision that actress Angelina Jolie made to remove both of her healthy breasts. That was a very different situation. Her condition was not DCIS. She had a gene mutation that gave her an extremely high risk of developing invasive breast cancer.
KNOX: Sally O'Neill's risk was much, much smaller. But she's the kind of person who likes to make a decision and be done with it. She says she just couldn't live with any risk of her abnormal cells becoming cancer.
O'NEILL: People ask me all the time: How did you decide so easily? And it was just something I felt was right. It was right for me. It didn't matter what anybody else thought. I got a lot of negative input from people saying that, you know, oh, my God. Those are your breasts. And I thought oh, my God. This is my life.
KNOX: O'Neill's decision to have a double mastectomy was such a radical one that the first surgeon she consulted refused to do it without a letter from a psychiatrist. 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.
DR. KEVIN HUGHES: 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. 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 are not.
NEIGHMOND: Now, Dr. Hughes does not advocate removing a healthy breast that doesn't have any DCIS. But he says he'll do it if he thinks a woman is doing it for the right reasons.
HUGHES: If they want to take the opposite breast off to never experience breast cancer again, that is a reasonable - it's a good reason to do it. 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.
NEIGHMOND: Because any cancer in that breast would be caught early, when it's highly curable, since women with DCIS get more frequent mammograms.
KNOX: Sally O'Neill's story is about medicine-to-the-max. And, in fact, many women are choosing to remove both breasts when they're diagnosed with DCIS, and many surgeons are obliging. The rate has doubled over the past 10 years. But some patients and some doctors are pushing back against what they consider too much treatment.
NEIGHMOND: And I talked to one of those patients. Peggy MacDonald lives in Portland, Oregon. She was recently diagnosed with DCIS and was stunned when the first thing she was told to do was see a breast surgeon.
PEGGY MACDONALD: And it didn't, at this point, make sense to me that I should rush into removing a part of my body that had some issue with it, but it wasn't showing, you know, this dramatic, invasive cancer.
NEIGHMOND: But, in fact, all the doctors MacDonald saw were treating it like it was invasive cancer. And the only two options she was given involved surgery: lumpectomy followed by radiation, or mastectomy.
MacDonald describes herself as a calm person who doesn't like making hasty decisions. And she felt like she was being railroaded.
MACDONALD: The second breast surgeon that we met with, for the first 10 minutes she spoke in such a canned manner, it was like she goes through this spiel on such a regular basis with exactly the same information that she's got it down to like, this weird canned speech.
KNOX: Now, none of the surgeons recommended removing her healthy breast. But all agreed she should have surgery to remove the abnormal cells.
MACDONALD: Basically, I felt beat down and by the end of May, I was sort of mentally prepared for a mastectomy.
NEIGHMOND: Then, one of her sisters sent her a news article about doctors overtreating DCIS. It quoted Dr. Laura Esserman, a breast surgeon at the University of California, San Francisco.
MacDonald went to San Francisco to see her. The office visit, she says, just felt right.
MACDONALD: It wasn't a canned thing. She says 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.
And time. Esserman stresses that there's no need to rush into surgery.
DR. LAURA ESSERMAN: I think we all need to take a step back and not be so hysterical. You know, when I see people who've been told they've got to make a decision in two weeks, that's just crazy. No one has shown a progression to invasive cancer in a two-week period of time - ever.
KNOX: Esserman even thinks the word carcinoma should be taken out of the disease name. She's insists it's not cancer.
ESSERMAN: It doesn't have the capacity to kill you, so that is not cancer, even though a lot of people call it and it has the word cancer in the name. I don't think that we should label it as cancer. I think it should be considered a ductal lesion. I think people would be much more willing to be calm about it.
KNOX: This point of view is very controversial among cancer specialists. Even so, after seeing Esserman, Peggy MacDonald decided not to have surgery, at least for now.
MACDONALD: I don't want to take it lightly. I don't want to say it's nothing, but I also don't want to treat it like it's invasive cancer when it's not.
NEIGHMOND: So, instead of surgery, Dr. Esserman has put MacDonald on hormone suppression therapy. She's taking a drug that blocks estrogen. Because her DCIS cells are fueled by estrogen, the hope is that without the hormone the cells will shrink and perhaps even go away.
MACDONALD: And I tell everybody now, I think my chances are 50/50; I may still end up needing to get surgery to take care of this. But I'll do that with a more of a clear conscience that I did more than the average person to come up with a decision that was a good decision for me.
KNOX: MacDonald's hoping her case will turn out like another of Dr. Esserman's patients, Barbara Mann. Mann took an estrogen-blocking medication as well, for six months. And, today an MRI scan and biopsy show no trace of DCIS in her breast.
BARBARA MANN: It's amazing; it's not even a case of less is more. This is a case of less is best. So, I am just hugely relieved, absolutely thrilled, and what I would really like is for every other woman in my position to know that this is an option for her.
NEIGHMOND: But it's an option that will require lifelong vigilance. Anyone who chooses not to have surgery will have to be watched carefully, have routine mammograms and maybe even MRI scans and biopsies.
KNOX: And be willing to live with the risk, however small, that DCIS might return and might turn into invasive cancer.
I'm Richard Knox.
NEIGHMOND: And I'm Patti Neighmond, NPR News.
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