Our Feel-Good War on Breast Cancer: MBCN Responds

April 27, 2013

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!

NMBCAD logo black smallMark 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

 

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A Wake Up Call for Young People With Metastatic Breast Cancer…And All of Us

April 8, 2013

By Katherine O”Brien, Secretary and PR Chair, MBCN

Do you remember “Love Story?” Oliver Barrett IV (Ryan O’Neal) and Jennifer Cavilleri (Ali McGraw) are the improbable lovers who defy parental disapproval and get married.

The only way to be surrounded by more sap would be to visit Vermont during the peak months of maple syrup production. Remember the hilarious send up on “Carol Burnett”?

Reviewers at Amazon call “Love Story” a cheesy sob story. (“If I ever hear Ali MacGraw say ‘preppie’ again I will probably spontaneously combust,” declares one commenter.)

Sobering Reality of Real Life…

I agree with all of those observations. And, a few years ago, I would also have hooted about a specific plot point—McGraw’s character dies at age 25 after being diagnosed with leukemia. Unfortunately, I have lost many friends to metastatic breast cancer (MBC). I know from painful experience that people do indeed die from breast cancer in their 20s and 30s.

Bridget Spence was 29.

What can you say about a 29-year-old-girl who died? That she was beautiful. And brilliant. And that this just totally sucks.

Bridget was diagnosed with breast cancer at 21. She had no family history. I used to think cases like hers were rare. Now I’m not so sure. As a patient advocate for people with metastatic breast cancer, I know a lot of people with both early and advanced breast cancer and they are young, old,  and all points in between. But I was frankly shocked when I saw the turnout for the “Under 40 & Living With Metastatic Breast Cancer” panel at the 2012 MBCN Conference.

Jen Smith, 36, has been living with Metastatic Breast Cancer since age 31, shortly after her son’s birth.

It seems like I know an awful lot of young mothers like Jen Smith  with metastatic breast cancer. Now, I consider myself fairly well informed on breast cancer risks such as gender, family history, dense breasts and so on. I knew that NOT having children increased a woman’s risk, due to the unopposed flow of estrogen. But until this year, I never knew that recent childbirth can temporarily increase one’s breast cancer risk. As noted on www.cancer.gov: 

Women who have recently given birth have a short-term increase in risk that declines after about 10 years. The reason for this temporary increase is not known, but some researchers believe that it may be due to the effect of high levels of hormones on microscopic cancers or to the rapid growth of breast cells during pregnancy (15). [Source: http://www.cancer.gov/cancertopics/factsheet/Risk/reproductive-history]

I don’t recall ever seeing any article or other information on this issue. I would guess that many obstetricians assume—as seems reasonable—that cancer is a disease of aging. And nursing mothers have a host of potential breast problems: blocked milk ducts, soreness, etc.

But I don’t seem to be the only one who thinks more young women—mothers and non-mothers alike—are getting metastatic breast cancer.

Is MBC Incidence  Rising in Young Women?

Rebecca H. Johnson, MD, of Seattle (Washington) Children’s Hospital and the University of Washington in Seattle, noticed that evidence from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database suggested that  incidence of metastatic breast cancer in young women is on the rise. Johnson and her fellow researchers recently released a study that found “a small but statistically significant increase” in metastatic breast cancer over the last three decades among U.S. women aged 25 to 39 years.

The researchers found that in women aged 25 to 39 years, the incidence of breast cancer with distant involvement at diagnosis increased from 1.53 per 100,000 in 1976 to 2.90 per 100,000 in 2009, representing an average compounded increase of 2.07% per year over the 34-year period. No such increase was seen in any other age group or in any other extent-of-disease subgroup of the same age range.

The rate of increasing incidence of distant disease was inversely proportional to age at diagnosis, with the greatest increase occurring in women aged 25 to 34 years.

Dr. Johnson was diagnosed with breast cancer (presumably early stage) at age age 27. “I’d meet young women patients with breast cancer and it seemed like a lot of friends of friends had breast cancer,” she told @newsJAMA. “And yet the literature kept saying that breast cancer in young women was rare.”

Her  study didn’t  evaluate cause. “The next steps for researchers will be to examine potential causes for this trend and look at etiologies,” she said. “Given there’s such a change over a short amount of time, we may find modifiable risk factors or potentially toxic exposures that are fueling this increase.”

She further explained that the research shouldn’t be taken out of context.  “What the average young woman [under 50] should not do is go get a mammogram, because while on a population level we saw a statistically significant increase, it’s not a large increase of risk for an individual. One thing that has the potential to affect young women’s survival is earlier detection—seeing a physician if you find a lump instead of ignoring it.”

How Can We Manage What We Don’t Measure?

CURE magazine’s Dr. Debu Tripathy noted that the research is based on “cancer registry data, which is very good at capturing data at the time of diagnosis, but not long-term follow-up (other than death). So this is really looking at the less common situation of women who actually present with metastases at the time of their original diagnosis – which only happens about 5 to 10 percent of the time, and perhaps more so in women who do not have access to health care and present with higher stage cancers.”

Dr. Tripathy is correct about that cancer registry data. NCI and SEER database record only incidence, initial treatment and mortality data. And, as Dr.Tripathy further correctly observes, 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.

So here’s the good news: Most people don’t start with metastatic breast cancer, which is what the cancer registry tracks.

…And the bad news: We really have no idea what’s going on with, you know, the MAJORITY of people who are diagnosed with metastatic breast cancer after a recurrence. As Dr. Tripathy says, other than death, the cancer registry doesn’t concern itself with long-term data.

So to recap: 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 who had a metastatic recurrence? The cancer registry does not track them—until they die.

“While [Dr. Johnson’s] report should not cause alarm or even affect any of our care guidelines, it may be a wake-up call to truly understand what might be driving this,” concludes Dr. Tripathy.

May be a wake up call?

MAY???

Well, gosh, no rush or anything. I mean, if it wouldn’t be a bother, maybe somebody could work on that truly understanding thing.

If I sound angry, it’s because I am. And so are my fellow patient advocates.

If Not Now, When?

“We need focused research to change incurable metastatic breast cancer into a treatable, chronic condition like HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused research and treatments for their disease, why can’t we women–who are wives, mothers, daughters, sisters and grandmothers AND over half of the population–receive similar research that will find strategies to keep us alive for 20-30 years?

“Are we not worthy of this effort?  Are we ignored because we quietly live with our disease?”

So, yes, Dr. Tripathy, you bet your stethoscope this is a wake-up call.

Because as Shirley says, “How many more thousands of us must die before the public and our sisters, who have survived early stage breast cancer, stand with us and for us?”

Cancer at any age and any stage is a terrible thing. But it is especially cruel when it happens to young people–women like Bridget Spence, who at age 29 should have just been getting started in life. There are too many women like Bridget, too many of my friends.

Olga Simkin was 34.

Maria Madden was 37.

Jennifer Lynne Strutzel Berg was 37.

Susan Niebur was 39.

Samantha Pritchett was 40.

Dana Robinson was 41.

Rachel Cheetham Moro was 42.

Zoh Vivian Murphy was 45.

Suzanne Hebert was 47.

Martha Rall was 49.

I have to repeat Shirley’s question. How many thousands more of us must die?