Breast Cancer: Catching Up With Amy Berman, a Woman Who Chose Life Over Longevity

HealthBeat readers may remember the two-part post that I wrote about Amy Berman back in October of 2011.

Part 1 began:  “When Amy Berman was diagnosed with Stage IV breast cancer a year ago, she made a courageous choice. Instead of fleeing death, she decided to pursue life.  Rejecting chemotherapy, radiation and surgery, she chose palliative care instead.” 

                                   Our War on Cancer

Berman knew that her stage IV cancer could not be cured. As a nurse, she also knew what women who undergo aggressive treatment endure—and that, despite that treatment, many will never escape the disease.

As Clifton Leaf points out in his new book The Truth in Small Doses, when people talk about the strides that we have has  made in our War On Cancer, they greatly exaggerate our success. When it comes to breast cancer, for example, 30 years after we launched the way, the number of women per 100,000 who die of breast cancer had actually grown from 28.4 per 100,000 in 1970 to 29.2 per 100,000 in 2000.

Over the next 10 years, the death rate fell to 26.2 per 100,000 women. But we know that this was mainly because we have gotten better at detecting breast cancer early, when the tumors are small and easily removed.  By contrast, most of the caustic drugs designed to defeat cancer have disappointed.

Of  “the myriad compounds that have set the research community abuzz, the ones that have already built up billions of sales,” Leaf observes, “there is little evidence” that “they have had more than a modest effect on long-term patient outcomes. Taken together, this multitude of drugs has been responsible for about a quarter of the reduction seen in the standardized death rate.”

Granted five-year-survival rates have improved. But this, too, is largely because we are diagnosing cancer earlier.  In the past, if the disease was detected when a woman was 65 and she died at 67, we would say she died of cancer. Today, if a tumor is detected when she is 62, and she lives a few months past 67, she has made it to the five-year mark and is counted as a “survivor.”  Thus Elizabeth Edwards’ name was added to the roll of victories–even though breast cancer killed her.

By measuring our progress in terms of five-year-survival rates we “transform nearly six hundred thousand annual deaths into a victory-in progress,” Leaf notes. This allows us to hide from what he calls “an unshakable reality: the rising toll from cancer is plain to see, but this method of counting is so firmly established and so commonly used by health care researchers and policymakers, that few remember anymore that it’s a statistical sleight of hand.”

Even If She Could Not Be Cured, Why Didn’t Berman Try to Buy More Time?

After she was diagnosed, Berman secured an appointment a pre-eminent researcher/clinician in the field of inflammatory breast cancer.

He was clear about what she should do: Chemo, radiation and a mastectomy, followed by more chemo. This he told her, is “what I recommend for all of my patients.”

In part 2 of my 2011 post, I quoted her memory of that conversation:

“I pressed him, ‘Why do the mastectomy?’ I asked, puzzled. ‘The cancer has already spread to my spine. You can’t remove it.’

“His brow furrowed: ‘Well, you don’t want to look at the cancer, do you?’

“He made it sound like cosmetic surgery,” she recalled. “Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary.”

She continued to press him.

“But what about the side effects of radiation?’ I asked. ‘I’ve heard they are terrible’.

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Breast Cancer “Awareness”: Marketing Fear — Part 1

 Peggy Orenstein is a brave woman. A breast cancer survivor, she has faced up to the fact that perhaps, if she hadn’t had a mammogram that revealed a tiny tumor when she was 35, it might have vanished on its own. She would not have known that it existed—and would not have undergone a lumpectomy plus six weeks of radiation.  Nor would she have suffered the emotional consequences of being told, at age 35, that she had breast cancer.

At that age few of us are ready to come face-to-face with our own mortality.  In last Sunday’s New York Times Magazine, she writes: “Recalling the fear, confusion anger and grief of that time is still painful.”

But sixteen years after her diagnosis we have learned more about breast cancer, and Orenstein is willing to look the truth in the eye:  “As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later?”

Regret is a tough one. After making a major decision that has life-changing consequences, few of us want to consider that we might have made the wrong call.  Instead, most women in Orenstein’s position say: “I’m so glad I had that mammogram. It saved my life!”

 Orenstein herself confesses, “that is what I used to say. I even wrote that in the pages of this magazine.

But if she hadn’t had the mammogram, and the cancer wasn’t discovered until she felt a lump, wouldn’t it have spread? Wouldn’t she be dead?

No. As Orenstein point out, “Breast cancer in your breast doesn’t kill you; the disease becomes deadly when it metastasizes, spreading to other organs or the bones.  Early detection is based on the theory, dating back to the late 19th century that the disease progresses consistently, beginning with a single rogue cell, growing sequentially and at some invariable point making a lethal leap.”

But science has advanced since the late 19th century, and we now know that just isn’t true. Sometimes breast cancer invades other parts of the body. Sometimes it doesn’t. The problem is that mammograms can’t tell us which cancers will spread.

                                  The Likelihood Of Over-Treatment               

What many women don’t realize is how commonplace the harmless cancers are. When someone is told she has breast cancer, she is likely to imagine a large, ugly lump, buried somewhere in her breast. Yet as Dr. David H. Gorski,  a surgical oncologist at the Barbara Ann Karmanos Cancer Institute who specializes in breast cancer explains: today approximately 30% to 40% of breast cancer diagnosis”  are examples of “ductal carcinoma in situ (DCI)”—cancers that begin in the milk ducts and “stay in place” (in situ). If they don’t spread, they are not life-threatening.  Some researchers call DCIs “Stage Zero” cancer. 

A recent study found that DCIS incidence rose from 1.87 per 100,000 in the mid-1970s to 32.5 in 2004,” he adds. “That’s a more than 16-fold increase over 30 years, and it’s pretty much all due to the introduction of mammographic screening.” (Mammograms are especially good at spotting DCIs. Unfortunately, they are not as good at finding the very aggressive cancers that are most likely to kill us.) )

“When it comes to DCIS, we don’t have a good handle on what percentage of DCIS will progress to invasive cancer, but we do know that a significant percentage will not.” For that reason, some argue that we should not tell patients that DCIS are “pre-cancerous.”  Labeling them “Stage Zero” would be more accurate.

Nevertheless, precisely because we don’t know, “oncologists tend to treat them all the same,” says Gorski.  “In other words, over diagnosis leads to overtreatment.”

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