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Guest Blog: Women with Metastatic Breast Cancer Clamor for a Different Awareness Level

Gary Schwitzer
Tuesday, October 4th, 2011

Gary Schwitzer has spent more than 30 years in journalism on radio, television, interactive multimedia and the Internet. He is the publisher of HealthNewsReview.org, a website aimed at improving the accuracy, balance and completeness of health news reporting and helping consumers evaluate the evidence for and against new ideas in health care. Gary blogs on the HealthNewsReview.org website. Want to know more? Go to: www.healthnewsreview.org or subscribe to the RSS Feed.

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Some breast cancer voices raise questions about simply raising “awareness” about breast cancer in October.  Some of them believe that raising awareness about screening, for example, should not be the only message or even the main message of the month.

Katherine O’Brien, who has metastatic breast cancer (MBC), and who publishes the ihatebreastcancer blog refers to being caught in “October’s pink undertow.”  Plunked down in the middle of breast cancer awareness month is National Metastatic Breast Cancer Awareness Day on October 13.  O’Brien says that people like her with MBC have different concerns from those with early stage cancer.  She wrote to me: “The day is not about general cancer awareness; it’s about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer.”

She quotes Ellen Moskowitz, past president of the Metastatic Breast Cancer Network (MBCN):

“We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure.”

The MBCN posted this YouTube video, and they post these “13 Facts Everyone Should Know about Metastatic Breast Cancer”:

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent (“treatable but unbeatable”).

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13th is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www.mbcn.org.

News coverage of breast cancer awareness month topics had barely begun before O’Brien already found problems.  She criticizes a Los Angeles Times story which, while it included a Stage IV woman among six profiles, repeatedly used the term “cancer-free.”  O’Brien argues that while these women may be “cancer-free” the Stage IV woman will always have cancer – even if it can’t be seen today.  And she was bothered by an accompanying LA Times piece that stated:

“Even better…aggressive breast cancers that are fueled by HER2 are on their way to being wiped out in the developed world.”

It’s the “wiped out” that caught her eye and that of Forbes reporter Matthew Herper, who, in response to this article, asked on Twitter, “How is an 8% recurrence rate being ‘wiped out?’”

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Guest Blog: We Interrupt This State Fair for a Little Prostate Cancer Screening

Gary Schwitzer
Wednesday, September 7th, 2011

Gary Schwitzer, has spent more than 30 years in journalism on radio, television, interactive multimedia and the Internet. He is the publisher of HealthNewsReview.org, a website aimed at improving the accuracy, balance and completeness of health news reporting and helping consumers evaluate the evidence for and against new ideas in health care. Gary blogs on the HealthNewsReview.org website. Want to know more? Go to: www.healthnewsreview.org or subscribe to the RSS Feed.

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It’s State Fair time in Minnesota – a grand time at one of the nation’s best state fairs. Every year, the NBC station in the Twin Cities, KARE-11, offers free health screenings at the fair. TV stations love such events. And this year the added touch was the fact that the big “Drive Against Prostate Cancer” mobile screening unit rolled onto the fairgrounds outside the KARE-11 building. It’s well-intentioned but it’s not as simple an idea as the TV station marketing people probably think it is.

Now, if KARE really cared about the issue, it would have a shared decision-making booth at the entrance to the screening van. Because prostate cancer screening isn’t simply a matter of “Drop the corn dog, cheese curds or hot-dish-on-a-stick and have a PSA test.” But that’s the way it comes across in the setting of mass screening on the fairgrounds. There are a few things a man should think about seriously before rolling up his sleeve for the supposedly “simple” blood test.

But here, prostate cancer screening is hawked in the same setting as the modern-day carnies pitching their slice-’em-and-dice-’em devices and inventions you only see at the state fair – “only at this price today!”

Maybe KARE should play on its TV monitors this video of American Cancer Society chief medical officer Otis Brawley, MD, who says, among other things:

“I’m very concerned. There’s a lot of publicity out there – some of it by people who want to make money by recruiting patients – that oversimplifies this – that says that ‘prostate cancer screening clearly saves lives.’ That is a lie. We don’t know that for sure……We’re very concerned about a number of clinics that are offering mass screening where informed decision making – where a man gets told the truth about screening and is allowed without pressure to make a decision – that’s not happening. Many of these free screening things, by the way, are designed more to get patients for hospitals and clinics and doctors than they are to benefit the patients. That’s a huge ethical issue that needs to be addressed.

We’re not against prostate cancer screening. We’re against a man being duped and deceived into getting prostate cancer screening.”

Addendum: A quick web search shows that state fairs in Kentucky, South Dakota, Idaho, Kansas, Virginia and Wisconsin also have offered prostate cancer screenings. There are probably many more.

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Guest Blog: NBC Urges Women >40 to Ask About CRP Test

Gary Schwitzer
Friday, August 19th, 2011

Gary Schwitzer, has spent more than 30 years in journalism on radio, television, interactive multimedia and the Internet. He is the publisher of HealthNewsReview.org, a website aimed at improving the accuracy, balance and completeness of health news reporting and helping consumers evaluate the evidence for and against new ideas in health care. Gary blogs on the HealthNewsReview.org website. Want to know more? Go to: www.healthnewsreview.org or subscribe to the RSS Feed.

After seeing the NBC Nightly News last night, a physician urged me to write about what he saw: a story about a “simple blood test that could save women’s lives.”

Readers – and maybe especially TV viewers – beware whenever you hear a story about “a simple blood test.”

And this is a good case in point.

Brian Williams led into the story stating:

“Two of three women who die suddenly of cardiac heart disease have no previous symptoms which is all the more reason women may want to ask their doctors about a blood test that can be a lifesaver.”

Then NBC News chief medical editor Dr. Nancy Snyderman said:

“It’s not a new test, it’s not an experimental test but nonetheless it’s a test not a lot of people know about and that’s a problem because this simple blood test could save your life.”

The test in question is the C-reactive protein or CRP test.

We’re only seconds deep into the story and “lifesaver” or “save your life” have come up twice. We’ll hold our breath for the evidence to back that up.

Then the story profiles a woman at high risk of heart attack, but quickly transitions to stating that unspecified numbers of women who are told they’re at low risk are clearly at high risk. A doctor interviewed says:

“All too often we see people who were told they were at low risk for heart disease but they’re in the emergency room having a heart attack and so they’re clearly not low risk.”

And, Dr. Nancy says….

“… that’s because most doctors do not check for c-reactive protein for fear of overtreating them.”

That’s quite a leap: women are having heart attacks in the ER because doctors didn’t check them for CRP.

NBC’s choice of expert interviewee is Dr. Paul Ridker, who says:

“We have learned that the cost of the screening and the cost of the medication is quite small compared to the number of events prevented so it’s a win-win for everyone involved.”

NBC didn’t point out what others – such as Merrill Goozner and ethicist Howard Brody have – that another way of looking at the win-win is by looking at who holds the patent on the CRP test and who benefits from its use.

Goozner wrote several years ago:

“What if I told you Dr. Paul Ridker of Harvard owns the patent to using C-reactive protein as a biomarker of heart disease and it’s licensed to companies making the test. And what if I told you his research has been funded by drug companies that make statins, which lower cholesterol and may be used to combat high levels of C-reactive protein.”

Harvard’s Dr. John Abramson wrote to journalists in Nieman Reports:

“The commercial bias does not stop with the research, but affects the way the results are reported to the public as well.”

But we didn’t hear anything about financial conflict of interest in NBC’s story. Only this ending from Dr. Nancy:

“If you’re over the age of 40, this is the time to have a conversation with your doctor about this very simple blood test that’s covered by most insurance.”

Any woman over the age of 40? That’s quite a leap from the high-risk woman profiled in the piece.

The discussion of the evidence never came, did it?

Well, here it is, from the US Preventive Services Task Force:

“The U.S. Preventive Services Task Force concludes that the current evidence is insufficient to assess the balance of benefits and harms of using the nontraditional risk factors (including CRP) to screen asymptomatic men and women with no history of coronary heart disease to prevent coronary heart disease events.
…
Although using CRP to screen men and women with intermediate coronary heart disease risk would reclassify some into the low-risk group and others into the high-risk group, the evidence is insufficient to determine the ultimate effect on the occurrence of coronary heart disease events and coronary heart disease-related deaths.”

Lifesaver?

Simple blood test?

Sounds a lot more complicated than what NBC reported.

Visit msnbc.com for breaking news, world news, and news about the economy

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Guest Blog: Laurel & Hardy and Prostate Cancer Chemoprevention

Gary Schwitzer
Wednesday, August 10th, 2011

Gary Schwitzer, has spent more than 30 years in journalism on radio, television, interactive multimedia and the Internet. He is the publisher of HealthNewsReview.org, a website aimed at improving the accuracy, balance and completeness of health news reporting and helping consumers evaluate the evidence for and against new ideas in health care. Gary blogs on the HealthNewsReview.org website. Want to know more? Go to: www.healthnewsreview.org or subscribe to the RSS Feed.

In the sometimes Laurel-and-Hardy-like (“Here’s another fine mess you’ve gotten us into!”) interactions between industry, government, and clinicians, there’s a debate brewing about whether drugs used to treat benign prostate problems (BPH) should also be used to try to prevent cancer of the prostate.

The drugs are of the class called 5-alpha reductase inhibitors (5-ARIs) – drugs like finasteride (Proscar) or dutasteride (Avodart).

For more than two years the American Urological Association and the American Society of Clinical Oncology have recommended that “healthy men who are screened regularly for prostate cancer and show no symptoms of the disease should talk to their doctors about using a 5-alpha reductase inhibitor (5-ARI) to prevent the disease.”

Earlier this year, two drug companies making these drugs asked the FDA to label their drugs as effective for cancer chemoprevention. Both requests were resoundingly defeated at the advisory committee level.

Oncology Times reported:

“During the wide-ranging discussion, several committee members expressed concern about the possibility of widespread chemoprevention prescriptions being written by varied practitioners for these drugs, and about patients possibly influenced by direct-to-consumer advertising. “It’s a little frightening, to be honest,” aid temporary voting member Inger Rosner, MD, LTC, US Army Medical Corps, Urologic Oncologist at Walter Reed Army Medical Center’s Urology Service.”

The FDA accepted the advisory committee’s recommendation, and, in June, informed doctors that that the labels for these drugs had been revised “to include new safety information about the increased risk of being diagnosed with a more serious form of prostate cancer (high-grade prostate cancer).” In other words, there was some evidence that these drugs that had been proposed to prevent prostate cancers had actually been linked to more aggressive prostate cancers in men who took them.

A physician friend wrote to me: “Questionable science led to a questionable guideline that led to an aggressive marketing strategy that backfired.”

Interestingly, rather than refute that label change or the evidence behind it, the American Urological Association wrote to the FDA (pdf file) with concern about one line in the FDA statement:

“Prior to initiating therapy with 5-ARIs, perform appropriate evaluation to rule out other urological conditions, including prostate cancer, that might mimic benign prostatic hyperplasia (BPH).”

The AUA countered:

“Because a biopsy is the most effective means by which we can distinguish malignant from benign disease, the current wording implies that all men obtain a routine prostate biopsy prior to commencing treatment – something that is, at present, not supported by the literature.”

Or, another view would be that all men should think really carefully before even considering treatment with this drug – which was the point of the FDA labeling action.

An article in the Journal of General Internal Medicine* in January concluded that:

“If reducing prostate caner incidence without regard to mortality is the desired outcome, forgoing PSA screening in the first place would be a much more effective strategy.”

Of course, the entire issue may be a moot point depending on what goes on behind urologists’ office doors when they meet with men, since, as a New England Journal of Medicine perspective piece by FDA authors stated last month:

“There is clearly ongoing off-label use of 5 alpha reductase inhibitors for this indication.”

It will be interesting to see how the FDA responds.

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* Dr. Michael Barry, one of the authors of the JGIM piece, is president of the Foundation for Informed Medical Decision Making, which supports the HealthNewsReview.org project. Dr. Richard Hoffman, another of the authors, is one of the project’s medical editors.

Photo credit: http://www.flickr.com/photos/karlosofsyston/

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