Our Feel-Good War on Breast Cancer: MBCN Responds

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

• NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
• We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

Mark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

4/30/2013 Editor’s Note: As noted above, we removed a disputed statistic we originally quoted from this site after some reader’s questioned its accuracy. [That sentence read in part: For Stage II and III, one-half to two-thirds will develop metastatic disease…] A Google search suggested the statistic came from one of advocate Musa Mayer’s articles. We asked her to comment, and with her permission, share her response. Musa writes:

“I can see I am indeed the source of this statistic, or rather what I wrote in the introductory section of “Silent Voices,” which was written in 2005.  I did get this quote from a text on breast cancer published in 1999, edited by Daniel Roses.  The figures come from an article on the treatment of metastatic breast cancer by Ruth Oratz, an NYU oncologist, written during the era when bone marrow transplants were still being investigated.  I think there may have been an earlier edition.

“There have been a few major advances in the adjuvant treatment of early breast cancer in the last 8 years, principally the use of adjuvant Herceptin, which has reduced recurrence by at least 50% in HER2+ disease, once considered among the deadliest subtype.  The use of adjuvant taxanes with AC regimens in triple-negative breast cancers has also reduced recurrence during these years.  Hormonal treatments have improved in a more incremental way, with the use of the aromatase inhibitors.  So all in all, I believe you can say that for women with non-metastatic disease, the outlook is better than it was even a decade ago.

“Just how much better?  It’s really hard to tell until the numbers mature over time, as we know recurrences can happen later now that more aggressive adjuvant treatment is in use.   The National Cancer Institute’s SEER database shows a steady increase in survival over time, looking at all invasive breast cancers.  For example, 1990 10-year survival was 77%, while in 2000 it was 84%.   But survival figures don’t necessarily represent significant gains, as they are distorted by the overdiagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980’s.

“The numbers are very different in different populations, with low socioeconomic status (hence poor access to care) and African American race predicting higher mortality.  In fact the disparities in survival and mortality have only become greater as more effective treatments are introduced.

“The annual mortality rates for breast cancer, age-adjusted, per 100,000, which DO give an accurate picture of progress, have decreased from 33.1 in 1990 to 27.6 in 2000 to 21.9 in 2010.  That’s a decrease of about one third over 20 years.  Not large, but not trivial, either.”

Source: email correspondence with Musa Mayer

 

Is this true? Komen claims 30% drop in BC mortality rates

by Ginny Knackmuhs, MBCN Vice President

Recent commercials for the Komen 3 day walk make this claim: a 30% drop in breast cancer mortality rates since the early 90’s due to early detection. Is this true?

According to Wikipedia, mortality rate is a measure of the number of deaths in a population, scaled to the size of that population, per unit of time. Mortality rate is typically expressed in units of deaths per 1000 individuals per year. So a breast cancer mortality rate of 31.6 in 1992, for example, means there were approximately 31 deaths for every 1000 individuals living with breast cancer at that time.

Statistics can be very confusing. When I first saw this claim of a 30% drop in mortality back in 2011, I was shocked and sure that Komen was wrong. Did this mean that 30% fewer people were dying from breast cancer? That sounded too optimistic.  I wrote to my friend who has a masters in applied math and economics and she enlightened me:
The mortality rate in 1992 was 31.60 and on average has dropped 2.2% every year. In 2008, for example the mortality rate was 22.14. Over that 17 year period, the mortality rate dropped by 9.46. (31.6 in 1992 minus 22.14in 2008= 9.46) See charts below:

So what about the 30%? Shouldn’t it be 9.46%? Ahh…welcome to the mysterious world of  statistics.

The % change in the mortality rate that Komen is quoting is calculated differently. It is a % of a % calculation. The actual rate change of -9.46% is divided by the original rate of 31.6%, giving a % change in mortality rate over 17 years of (-9.46/31.6) or 29.9% change. This is the figure that Komen is referencing. (30% drop in BC death RATES over a given period of time)

Here’s a simpler example. If we raised the tax rate from 5% to 10%, we have doubled the rate (100% increase because 5% change divided by the original 5%rate = 100 —also look at it this way: 10 is twice 5, a 100% increase) although the actual rate change is an additional 5%. If you were the angry taxpayer, you would probably report this as a 100% increase in your tax rate, rather than saying it was an addition of  5%. Both are accurate statistically, but you can see the potential for spinning the numbers to support your campaign.

I read another example in the newspaper this morning. The headline said: “ADHD cases up 24% in a decade.” I immediately envisioned almost a quarter more of ADHD children, the same way I envisioned 30% fewer people dying from breast cancer. Neither is true. The ADHD article went on to explain the basis of the 24%: “The disorder was detected in 3.1 percent of children who received care at Kaiser Permanente Southern California in 2010, compared with 2.5 percent in 2001, according to the study, published Monday [1/20/13] by the journal JAMA Pediatrics.” In other words, 2.5% rose to 3.1 %, an additional .6%, but compared to the initial rate, a 24% change in rates (.6%/2.5%= 24%)

I told you it’s confusing!! You can usually find some statistic to make your position look good. That being said, in the metastatic bc community, we usually focus on the NUMBER of people dying and not the RATES. Despite early detection and advances in treatment, the actual number of deaths over the last 20 years has remained essentially unchanged, hovering around 40,000 deaths per year.

NBCC explains it this way:

Truth #5: Breast cancer mortality rates are declining

TRUE. Breast cancer death rates changed little between 1930 and 1990, but decreased 27% from 1990 to 2005.

Between 1994 and 2003, the mortality rate for women of all races combined declined by 2.4% annually. In white women, breast cancer mortality declined by 2.5% annually. In black women, mortality declined by 1.4% annually during the same period. Some good news, but remember there are still 40,000 women who will die of breast cancer this year.

While these statistics are encouraging — we don’t actually know why mortality rates decreased. We need more research to figure out what factors led to the reduction in death from breast cancer so that we may continue the downward trend — and we need to make certain it’s the same for all women. We must continue pushing to find out what causes this disease.

Komen attributes all of the change to early detection. Certainly changes in treatment have also helped. The American Cancer Society 2011-2012 report states: “The decline in breast cancer mortality has been attributed to both improvements in breast cancer treatment and early detection.”

What’s the lesson here for those of us living with metastatic breast cancer? I hope after this little math lesson that you are forever grateful that you don’t have to sit through Statistics 101! My friend the economist who explained all this to me, ended her email, saying: “Hope this helps.  Anyway, it would make me much happier if the mortality rate were 31.6 – 29.9!”

I hope you understand better the statistics being quoted and will read articles closely in the future, where the same type of statistic is used. While legitimate statistically, the percent change in mortality rates hides the reality of a hard core of stage IV patients who continue to die. After forty years of research in the War on Cancer, we still don’t know what causes breast cancer or what causes it to spread. We need to continue to advocate and raise awareness of metastatic disease and the lack of progress in preventing and stopping metastases.