A Patient's View on Awareness

I originally wrote this article for Healthline. Due to system maintenance, it is currently unavailable.  Because it should be seen during the month of October, I am reposting it on my blog, without the pretty pictures and things they added and with some minor updates.  I will let you know when it is again available on their site, as it is easier to read there. 

A Metastatic Breast Cancer Patient's View on Awareness
by Ann Silberman

To every thing there is a season, and a time to every purpose under Heaven,” goes the lyric in the song Turn, Turn, Turn, written by Pete Seeger in the 1950s. For those of us with metastatic breast cancer, that lyric takes on a deeper meaning. Not only do we live with the knowledge that our time is short and our season is waning, but we also exist within a culture that aims a pink spotlight at the wrong cause: breast cancer awareness.

Awareness, as defined by breast cancer organizations, means understanding that breast cancer exists and taking steps to get it diagnosed as early as possible. If you do those things, they contend, you will survive. But for those of us who are metastatic and whose disease is incurable - despite having had early detection - we realize that the focus on awareness is out of sync with the reality of the problem: a need for more research.

Over the past 30 years, billions of dollars have been spent on this concept of awareness. Despite these well-meaning campaigns, statistics show that the number of deaths from breast cancer has hovered around the 40,000 range for the past two decades. And there are still many gaps in our scientific knowledge of the disease itself.

At this point, everybody—from the second-grader down the street to your centurion great-grandfather—knows what breast cancer is, and that mammographic screening is the detection tool of choice. But this wasn’t always so. Back in the mid-1970s, the culture wasn’t as open. Just a few years earlier, Rob and Laura Petrie on the Dick Van Dyke Show had to sleep in twin beds so as not to offend the public’s sensibilities. Breast cancer simply wasn’t talked about. Muscle and sometimes bone were removed along with breast tissue in mastectomies, which was extremely disfiguring, and women only admitted to undergoing them in hushed whispers.

First Lady Betty Ford was diagnosed with breast cancer, and in 1974, she publicly announced that she’d had a mastectomy. Ford was applauded for being open about the disease because many women felt that they could finally confess that they too had undergone mastectomies. There was even a jump in the number of breast cancer diagnoses after the announcement. Women with lumps cast off their embarrassment and flooded doctors offices to get them checked out.

When the main breast cancer charities came along in the mid-1980s, society had already begun to change. Women had burned their bras in the name of equal rights, and sexuality— including breasts—were becoming advertising vehicles. The time was right to bring breast cancer into the public spotlight.

The Phenomenon of Cause Marketing
Why Products Are Plastered with Pink Ribbons Every October

National Breast Cancer Awareness Month (NBCAM) was started by a pharmaceutical company that had ties to tamoxifen, an anti-cancer drug still used widely today. The aim of NBCAM was to make sure every woman was aware of this disease, and to promote mammography as the most powerful weapon in the fight against breast cancer. Back in the 1980s, this seemed like a reasonable goal. Is it still today?

Every October, companies plaster products from soup to vacuum cleaners with pink banners and those ubiquitous pink ribbons under the guise of helping cancer patients. Termed “cause marketing,” a percentage of the profits from these products are promised to breast cancer awareness charities, garnering companies the tax break they desire while advertising the good they want us to believe they are doing. Even small businesses, such as bars and restaurants, get in on the hype, promoting pink drinks and donating a portion of the profits. The White House, the Empire State Building, and the uniforms of NFL athletes all turn pink—all for the cause of breast cancer awareness.

The Susan G. Komen Foundation is the charity perhaps most closely associated with breast cancer. Despite having had “for the cure” in its name for most of its existence, this organization focuses on awareness rather than research. And many charities follow suit, raking in tens of millions of dollars yearly. But is spending money on all this awareness still necessary? Breasts are now out and proud—there’s no longer embarrassment associated with having them or having them removed.

Having worked as a school employee from elementary to high school, I know firsthand that children at every grade level are aware of breast cancer. “I heart boobies” bracelets are popular, especially among the middle school set. When you ask children why they’re wearing them, the universal answer is “To support breast cancer awareness.” (The real answer is because the message is subversively trendy.) Even third to fifth graders can converse on the topic. Many have had teachers or parents with breast cancer, and they too live in a culture that turns pink every October. I’ve seen small kids collect pennies for breast cancer awareness and wear pink at Little League games, saying the word “breast” as casually as they would any other body part.

For many women, their first mammogram is as much a rite of passage as is their first period, and women often talk about at what age they got their “baseline.” Today, women aren’t afraid to go see doctors for screenings. And now, cancer is the first thing they think of upon finding a lump, not the last.

If the goal of breast cancer awareness has been achieved—and I believe it has—then that still leaves early detection. Finding cancer early enough to prevent spread would be a worthy goal if that was all there was to curing cancer. Unfortunately, there’s no evidence to suggest that it is, and there’s plenty to prove that it isn’t.

The False Safety of Early Detection

What the Unpredictability of Metastasis Means

According to the Metastatic Breast Cancer Network (MBCN), 90 to 96 percent of women who now have metastatic disease were diagnosed at an early stage. This is an important fact. It means that almost every single woman who has terminal breast cancer today can sit under the “early detection” umbrella. Most went through treatment and then discovered that their cancer had unexpectedly spread, months to decades later.  I’m one of them.

In 2009, I was diagnosed with stage 2a breast cancer with no infected nodes and no indication that my cancer had metastasized. I had a mastectomy, six rounds of chemo, and a year of Herceptin. I was believed to be on my way to a long, healthy life—until 2011, when breast cancer was found in my liver. My disease is now incurable. Contrast that to some of my friends who were diagnosed at the same time as I was. Several were stage 3c with a dire prognosis, yet they’re healthy today, and cancer-free. I was the only one who progressed to stage 4. While personal examples are merely anecdotal evidence, statistics echo this phenomenon.  Some cancers are destined to spread no matter how early they are caught, and others never will.

People are logical. We like order. But unfortunately, cancer doesn’t neatly progress from stage 1 to 2, 2 to 3, and 3 to 4. Some cancer cells take an immediate ride through the body, hiding in an organ until something sparks growth two, five—even 10 years later. Other cancers won’t ever metastasize, rendering the idea of early detection meaningless. Only research can tell when, why, or in whom metastases will happen. That is data we currently don’t have.

The Dangers of Overscreening

More Mammograms Aren’t Necessarily a Good Thing

We’ve learned much about breast cancer since the 1980s, and the idea of yearly mammography for regular screening is so deep-seated in our culture that women become enraged at the suggestion that we may be over-screening. Yet, it’s true. Study after study has highlighted the limits of breast cancer screening. A recent study, which was published in the British Medical Journal, was a 25-year analysis that concluded screening didn’t decrease the risk of dying from cancer. Still, many women have been indoctrinated for decades with the message that they must have yearly mammograms, and nothing will talk them out of it.

While nobody is suggesting that women never should get mammograms, it’s becoming increasingly clear that regular screening itself carries risks. The National Cancer Institute reports that fewer than five of 1,000 women actually have breast cancer when they’re screened. That means most abnormal mammograms are false positives, which cause a tremendous amount of anxiety, not to mention unnecessary biopsies. And mammograms are now finding a precancerous condition called ductal carcinoma in situ (DCIS), or “stage 0” cancer. DCIS is not a true cancer. It’s not invasive and can’t kill, but it must be treated like cancer because in some cases, it does become invasive. There are only subtle clues that hint at which DCIS may end up becoming dangerous, and thus no form of it can be ignored.

The American Cancer Society reports that the incidence of DCIS increased seven-fold from 1980. Many doctors believe that up to half of these DCIS cases would have disappeared in time. And up to 14 percent of women who died from other causes had DCIS according to their autopsies, and never knew it. Awareness and overscreening has led to hundreds of thousands of disfiguring surgeries for something that never may have hurt them - if only we knew more about it.

The Well-Funded Awareness Machine

The Majority of Donation Dollars Don’t Go to Finding a Cure

Clearly, finding cancer early doesn’t always save one from metastases. So it seems logical that at least a larger portion of charitable dollars should be spent on helping those with end-stage breast cancer. But independent research dollars are difficult to come by.

The Susan G. Komen Foundation (also known as Komen), by far the largest breast cancer charity, only donates 17 percent of their millions to fund research grants. And MBCN estimates that less than five percent of all charitable money goes towards research for metastases, the only form of breast cancer that kills. The rest of the money is funneled back into awareness and education. Races are sponsored, literature is distributed, breast self-exams are advertised, and of course, mammogram machines for clinics are funded. But little is spent to help save those who are dying or who are living in the late stages of the disease.

Komen is not alone. Even smaller charities, such as the Keep a Breast Foundation, don’t fund breast cancer research. Their money goes towards making plastic awareness bracelets and giving their executives large salaries, while sending the rest into “green” foundations and other initiatives that have nothing to do with the disease. Cancer research funding is mostly left to drug companies or the government.

A Call to Action

Shifting the Focus from Raising Awareness to Saving Lives

To become aware, one must understand two important facts: that the only people who die of breast cancer are the people whose cancer has spread outside the breast (when it’s contained in the breast, it can’t kill), and that one is not necessarily safe from that spread after treatment—even after a mastectomy to remove the cancer. Although the numbers here are fuzzy, the risk for relapse, according to the American Cancer Society, is one in five. What is certain is today, as was the case 20 years ago, every woman with metastatic disease will die. That’s 40,000 women every year.

Treatment options for metastatic largely remain the same as they have always been: radiation and chemo. Women with HER2+ cancer, an aggressive form of the disease, are fortunate enough to have Herceptin, Perjeta, and Kadcyla in their arsenal, new drugs that have extended lives by months to years, including mine. But for women with triple negative breast cancer (TNBC), another aggressive cancer, there’s still no magic drug. And unlike with other cancers, a metastatic spread of breast cancer—typically to the brain, lung, liver, or bones—is always fatal. Awareness hasn’t changed the most important numbers.

The breast cancer agenda shouldn’t be about finding breast cancer. It should be about saving those already afflicted with the disease: figuring out which DCIS becomes invasive, and learning about the mechanics of metastases. Just think, if all the dollars that awareness charities raised during the month of October went to labs and research doctors instead of marketing experts, the problem of breast cancer—and other cancers along with it—might well be solved.

Focusing dollars on breast cancer awareness and early detection today is as relevant as buying PalmPilots or twin beds for married couples. The true race for a cure has yet to begin. It’s time to put down the pink flags, roll up the ribbons, and focus on change.

As Pete Seeger said, it’s time to “turn, turn, turn.” We must turn away from awareness and turn towards research.