Anecdote versus Science

Yesterday, The New England Journal of Medicine publishes a study which seems to show that the value of early detection may not affect breast cancer outcomes as much as previously thought. The study has been covered by The New York Times and just about every other media outlet you can think of, so I won’t belabor what others have already reported.

The upshot is this: Previous studies, done decades ago, show that early mammogram screenings could reduce breast cancer deaths by as much as 15 to 25 percent. This new study, which isn’t perfect, suggests that early detection may make far less of a difference, as little as 2 percent, maybe even 0 percent.

In the NEJM study, researchers follow women in Norway. The first group, aged 50 to 69, get early mammogram screenings and were treated by multidisciplinary “breast cancer teams” including surgeons, radiologists, oncologists, pathologists and nurses. In this group, breast cancer mortality decreases by 10 percent. The second group, aged 70 and older, do not get early mammogram screenings because they are not required at the time that this group was younger. This group did get the care of the multidisciplinary teams, however. The breast cancer mortality among the older women fell 8 percent. Subtract 8 from 10, and you get a mere 2 percent advantage among the women who got early mammograms.

Everyone, even the researchers, seems surprised by the results of this study. The researchers expected that mammograms would reduce mortality by 30 percent. That’s a lot more than the 2 percent difference they found. The New York Times story quotes a doctor from Sloan Kettering, where I got my second opinion, saying that this affirms that mammograms saves lives. A radiologist at UCSF, where I’m being treated now, tells The Times that the study shows her that if you get the same treatment and it doesn’t make a difference if you find the cancer early or later, then the early detection doesn’t matter. Hmm.

I don’t blame the docs for being conflicted. This flies in the face of everything I have been told since I turned 40, and especially since I was diagnosed with breast cancer. The mantra I hear again and again is, “Early detection makes all the difference.” Maybe this was more true before major medical centers created these breast cancer teams, before there were targeted hormone and protein drugs to treat breast cancer, before it was common to do surgery on breast cancer that couldn’t even be seen by the naked eye. And yet, it just makes intuitive sense that finding cancer early makes a difference. Isn’t it better if you treat a flu before it turns into pneumonia? Shouldn’t you bandage a bruised ankle bone before it becomes a broken one? Of course, intuition is not science.

As you read the stories about this study, you can sense how reluctant the doctors and the public health experts are to give up the “early detection” mantra. Reporters quote many experts saying that they would still get early mammograms if it was their breast, their risk of cancer.

Even before this study comes out, when my primary care doc in Brooklyn sits me down two months ago to tell me I have breast cancer, she also expresses regret at new standards that would not require women as young as 40 to get regular mammograms, but would push the mammogram requirement back to age 50.

“If you hadn’t already been on the mammogram track, we might not have found this cancer so early,” she tells me. “You’re the exception that disproves the rule. It makes me uncomfortable.”

I would not be writing this blog if my primary care doc had not sent me for my first mammogram at 40, if a radiologist in Manhattan had not been just a little paranoid, if she hadn’t made me come in for a followup image, if she hadn’t recommended a biopsy. It turns out I had a lot of cancer that had not yet spread, ductal carcinoma in situ, DCIS. But I had an invasive, though small, tumor in the middle of all that DCIS. Thought the complete pathology on that tumor is not back yet, the preliminary word is that it was a nasty, nasty little thing. All I can say is that I am so, so glad that my tumor does not get the chance to grow for three more years, until I turn 50. I doubt my posts would be so jokey in that case. I wonder if I would even be well enough to write them.

I know public policy and treatment need to be based on science. But I’m with the experts: Maybe in most cases, finding breast cancer early isn’t as important with all the improvements in breast cancer treatment over the last 20 years. But if it’s me, I’ll go for the early mammogram.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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5 Responses to Anecdote versus Science

  1. Janet Galea says:

    Glad to hear you’re doing well…but, take it easy. We moved back to Southern California a couple of weeks ago. A question: did they “stage” your cancer? I’m also wondering what the lymph nodes showed? Hopefully, nothing…more in a while. Janet

  2. Janet Galea says:

    Mine was very early stage 1 -DCIS, slow growing estrogen fueled. Lumpectomy – two nodes under arm removed/clear. Sentinel node biopsy…clear. I was post-menopausal…barely. No chemo – radiation/39 days, I think but I believe they are doing less now… and four years of arimidex. I am over five years cancer free…just for comparison as you consider options to discuss with your oncologist. My treatment was with John Wayne Cancer in Santa Monica and my surgeon was Armando Guiliano…at the time I was Executive Director of The Wellness Community – a non-profit providing free psychosocial support for people with cancer and their families. As my board chair said ‘Janet, we didn’t expect you to take your job quite so seriously”. All is good … best to you!!

    • leftbreast says:

      Janet,
      Thanks for checking in. It’s always good to hear other stories for perspective. Here’s my situation in a nutshell: Fair bit of DCIS in left breast, one margin not clear, a small, aggressive tumor embedded in all that DCIS. Took out one node, it was clear. Prelim. pathology shows a high grade tumor, i.e. funky, estrogen and progesterone reactive. Her-2 results pending. Waiting to get an appointment with UCSF oncologist. I have this hunch that I’m going to have to do chemo. Got any wig advice? I’d rather not go the wig route, but not sure I have the courage to really have my scalp painted with designs in indelible ink, as I’ve been threatening!

  3. Catherine says:

    Yes, well, they are talking MORTALITY, not disease-free and quality of life. The doctors and researchers should ask the women diagnosed at Stage IV, who are usually on some form of life-support chemo for the rest of their lives, how they would feel if their cancer had been diagnosed and treated at Stage I.

    • leftbreast says:

      Catherine. Indeed. I think this argument is going to go on for a while, along with the argument about whether DCIS should be treated. If they ask the women, I bet, all would go for early detection and early treatment.

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