Guest Post: Sloppy Reporting Affects Too Much Cancer Writing

This month, I am re-posting an excellent blog post by Patricia Prijatel, the E.T. Meredith Distinguished Professor of Journalism Emeritus at Drake University in Des Moines, Iowa.  She is the author of Surviving Triple-Negative Breast Cancer, an investigation into the causes and treatments of triple-negative breast cancer (TNBC), the type of breast cancer that we both had. The book was published in 2012 and can be found here.

This article was originally posted on Patricia’s blog, Positives About Negative, on September 8, 2013. In it, she describes how it is that media reporters misinform the public about triple-negative breast cancer and the effects of that misinformation on the public’s understanding of the disease. Although she focuses specifically on TNBC, the situation she describes is rampant in the media when it comes to health and other topics, and she calls on reporters to be precise in their reporting, to represent their topic accurately, and take responsibility for their words and the effect those words have on the audience.

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Sloppy Reporting Affects Too Much Cancer Writing

By Patricia Prijatel

Reporters: Precision is especially important in health writing.  

Patients: Read carefully and learn to spot misinformation and dangerous generalizations.

I have been a journalist for 46 years, 30 of that teaching at some level. My son is a journalist, as are most of my close friends. Yet one of my biggest frustrations since my cancer diagnosis is with my own profession.

Most journalists have more of a job than they can handle right now, so I offer a few rules for them about breast cancer reporting, skewed toward information about triple-negative breast cancer (TNBC), which gets especially distorted in the media. What tripped my trigger today was a story in KGW.com, a station in Portland, Oregon, but it has been an issue with The New York Times, medical journals, blogs, and just about every form of medical or health information.

1. No one type of breast cancer is THE most aggressive. Not TNBC, not Her-2 positive, not inflammatory, all of which are repeatedly given that description in outlets large and small.

Which is THE most aggressive? Plenty of all types. Even early-stage hormone-positive breast cancer can be aggressive with the wrong mix of genetics (the BRCA genetic mutation and others that researchers are still uncovering), family history, and numerous environmental, health, and lifestyle issues (insulin resistance, weight, alcohol abuse, and so on.)

Some forms of TNBC are more lethal than some forms of hormone-positive, and less lethal than other forms. And so it is with all types and subtypes.

2.  There are successful treatments for most forms of TNBC. Yet journalists easily say things such as, in the KGW.com piece, “Women with triple negative breast cancer don’t usually respond to most traditional therapies.” I honestly appreciate that qualifier, “usually.” Neverthless, the statement is inaccurate. It is true that TNBC tumors are not responsive to estrogen-altering drugs such as tamoxifen and Arimidex because the disease is not fueled by estrogen.

But TNBC responds well to typical chemotherapy—better than other forms of cancer respond, in fact. So women with TNBC usually get their drugs in the form of chemo, either before or right after surgery, rather than in five-year doses, as is the case with patients with estrogen-positive disease.

Treatment for metastatic TNBC—stage IV—remains difficult, and it is true that many of those patients do not respond to current therapies. But fewer than 10 percent of patients with TNBC have stage IV, which means that 90 percent may respond well to treatment.

So the helpful qualifier in that statement would be “Metastatic TNBC does not usually respond well to most traditional therapies.”

3. Readers internalize your words. Last week I talked to a woman who had been given an excellent prognosis from her doctor, yet still thought her outlook was grim because she read a news release saying TNBC was lethal. Communications research demonstrates this phenomenon—we’re more likely to consider media reality as the real deal instead of our own lives. Everybody lives in cool apartments and houses on TV, so you believe that to be true in real life, despite the fact that most of your friends have standard-issue digs with furnishings from WalMart. Same way with health issues. Ominous news in the media feels more accurate than your doc’s more measured approach.

4. The generalizations you use can loop around to negatively affect your readers’ and listeners’ health. I recently talked to a highly educated woman with a medical background who thought that it did not matter that her TNBC was stage 1. “Stage doesn’t matter with this disease, does it?” she asked. She was ready to give up. Of course stage matters. Stage 1 TNBC is much less aggressive than stage 4 of anything else. The great majority of women with stage 1 TNBC survive—as many as 90 percent in some studies.

Still, because she thought TNBC was automatically aggressive, she was giving up, and few battles in health or otherwise are won by giving up.

So do your research and don’t lump early stage with late stage disease. The research reported on by KGW.com was on the drug PLX2297, which may be effective against TNBC. I cannot find the research the reporter alludes to, but I did find a clinical trial for PLX3397 in connection with Eribulin for metastatic TNBC.  Metastatic is late stage. Metastatic is a much different disease from non-metastatic. Know the difference and include it in your story. It actually only takes a word.

5. Remember your vocabulary. Lethal means deadly. So if you tell me my disease is lethal, you are telling me it will kill me. Yet most women with breast cancer, including TNBC, live happy lives long after diagnosis. I have talked to a great many of them. They compete in triathlons, have babies, tend their grandchildren, get remarried, buy cottages by the ocean.

6. Get your stats straight or don’t use them. Just as all breast cancers are different, so are their prognoses. Saying that TNBC patients have “another five to eight years to live,” as KGW.com reported, is outrageous. There is no research to back this up. Most recurrences of TNBC come in the first three years, but a host of studies show that the majority of women with the disease make that marker easily and live disease-free for decades. I have interviewed countless women who are 20 years past this diagnosis. And, sadly, I have lost friends before the three-year mark. There is no one prognosis, but the reality is that most women survive beyond “five to eight” years. Don’t tell readers they’ll likely be dead in five years. Really, I have to say that?

7.  Never settle for a one-source story. This is pretty basic and is true of all journalism, but especially for health. That source could be wrong, inarticulate, promoting an agenda, or speaking in medical shorthand that the writer’s colleagues might comprehend but which may confuse or frighten their patients. Researchers naturally want to show the importance of their findings and, in so doing, could mischaracterize the seriousness of a disease. This information is too important to let one individual set the tone. At least link to organizations with a broader perspective. Numerous sites exist for accurate breast cancer information, including breastcancer.org, the Triple-Negative Breast Cancer Foundation, Living Beyond Breast Cancer, and of course, this blog.

Read more about TNBC in the book, Surviving Triple-Negative Breast Cancer.

You Don’t Want to Be Like Me

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Much as I like to think I’m a good role model (as humans go), I’m guessing that none of you wants to be like me. Bright, witty or (a-hem) humble as I might be, being like me means that you live your life in the shadow of a cancer diagnosis.  Specifically, a diagnosis of triple-negative breast cancer (TNBC).

Since this topic has become one of special interest to me (sigh), I figure the least I can do is use what I learn to help keep others off the path I’m on. What follows here are a few pointers, based on recent research, that might keep you from emulating me:

First off, if you want to avoid a diagnosis of TNBC, don’t have children. According to a study in the Journal of the National Cancer Institute, the more times a woman gives birth, the higher her risk of TNBC. Those of you looking for a reason not to get pregnant might shout out with relief at this news, but there’s one problem, and it comes in the form of a Catch-22. The research also confirmed that women who don’t give birth at all have a 40% higher risk of developing estrogen-positive disease, the most common type of breast cancer. The report can give you the fine details about this conundrum, but what they point to is this: you may be damned if you do and damned if you don’t. (I don’t care what the study says, dammit, I’m still glad I have my kids.)

The second pointer: Eat your veggies, specifically your cabbage, kale and other cruciferous ones. Research from Italy shows that indole-3-carbinole, a substance found in large quantities in these veggies, can fight both TNBC and hormone-positive breast cancer when injected into tumors.  OK, so the study was done in cell lines in a lab, not in humans, but you can’t use that as an excuse to avoid eating Brussels sprouts.

Speaking of antioxidants, you might try to figure out how to incorporate a particular one into your system. A report in Cancer Biology and Therapy describes how the tumor-suppressor protein Caveolin-1 (Cav-1) can inhibit cancer, cardiovascular disease, and muscular dystrophy, and it might be particularly helpful in those of us with TNBC. There’s lots of good data in the article, but no explanation of how you can ensure that you have this protein, and no genetic tests for it are currently available.  So let’s file this news in the “keep an eye on it” category.

Third, keep up with that exercise and watch your weight. With all the talk about health problems in the U.S., we should all know this by now, but news from the Women’s Health Initiative published in Cancer Epidemiology, Biomarkers and Prevention confirms that being overweight and inactive increases your risk of breast cancer (and about a million other health problems).  But here are some of the fine details: weight gain between ages 35 and 50 carries the greatest risk, and a body mass index above 31 and below 23.75 are also risk factors.  So even though you can’t ever be too rich, it appears that you can indeed be too thin.

Fourth, read the fine print about Vitamin D. Getting more might be good thing: low levels of vitamin D are directly correlated with TNBC in humans. But if you’re a mouse, that vitamin might not be such a good thing.  Researchers at Georgetown University Medical Center found that vitamin D significantly reduced the development of estrogen-positive breast cancer in both lean and obese mice, but did not help mice with estrogen-negative cancer (which includes TNBC). In fact, obese mice who developed estrogen-negative cancer were worse off than lean mice if they were given vitamin D.  (See, obesity is a bad thing even in mice.)

Older women might especially like these next two items:

•  If you’re past menopause, you can just keep right on smoking and drinking alcohol and not worry about increasing your risk of TNBC.  Actually, you might even want to drink a little more. The researchers determined that smoking and alcohol use were both associated with estrogen-positive breast cancer, but not with TNBC (Cancer Causes Control). In fact, drinking alcohol actually slightly reduced the risk of TNBC. So there you go – a reason to toast menopause with that extra glass of wine, except that for that darned Catch-22 of alcohol increasing the risk of hormone-positive disease. And, oh yeah, there’s still the problem of smoking leading to lung cancer.
•  If you are over 65 and have TNBC with affected lymph nodes, make sure you get that chemotherapy. Research published in the Journal of the American Medical Association showed that older patients in generally good health with TNBC do as well as younger patients and should get the best possible chemotherapy.

So there you have it for this week.  Next week, who knows? The evidence cited here might be de-bunked in the next round of research in the War on Cancer. Here’s hoping you never find yourself, like me, a foot soldier in that War.

The Pink Month

So there it was when I opened the carton — that damned pink ribbon stamped all over my eggs.

Yes, it’s that month again, time to be aware of breast cancer.  If the eggs don’t get to you, the Sunday comics will.  I tried to overlook the ones printed in pink a couple weeks ago.  Then yesterday, the sign posted at the grocery checkout said that, if the cashier forgets to ask you if you’d like to make a donation to breast cancer research, you would get a free 2-liter bottle of soda.

Can we all say it out loud now?

This is nuts.

Absurd.

Ridiculous.

Try to find the logic in it.  If we DON’T ask you to contribute, you WIN some soda — 2 liters of the stuff that, for all we know, may help contribute to the very disease we’re trying to eradicate.

I’m all for bringing awareness to a serious topic. (Did you know it’s also Domestic Violence Awareness month? I wonder what the color for that is.) Since I can’t fight the marketers who try to fool us into believing that buying something pink will save us all, I’ll do my best in this post to bring an educated awareness to the topic.

Two items have caught my attention in recent weeks.

First, it’s important to know that cancer is not one disease but a complex set of diseases, and to anticipate a single cure is to court disappointment.  With breast cancer alone, there may be as many as a dozen varieties (in situ, invasive, inflammatory, lobular, triple negative, and then ER+, PR+, Her2 Neg, and any combination of these last three). So, when we hear people talk about finding “the cure” for cancer, breast or otherwise, we need to understand the complexity of this task.  Thus, one blogger has taken Gordon Brown, the current prime minister of England, to task for being overly optimistic about the role Britain will play. You can read about it here. Some of the comments after the post are telling.

There is good news, however, from the Triple Negative Breast Cancer Foundation, the group that focuses on people like me. The booklet they’ve just released  (“Guide to Understanding Triple Negative Breast Cancer”) clarifies the confusion about the different types of breast cancer and treatment, and reports the progress of current research targeting triple-negative disease.

Some investigators blatantly state that the prognosis for those of us with triple negative disease is poor. The booklet helps dispel that idea with this hopeful information:

“Studies show chemotherapy works better against triple-negative cancers than hormone receptor-positive breast cancers.”

And this: “After five years, your risk of recurrence goes down. In fact, as time goes on, your risk for recurrence may be lower than that of someone treated for estrogen receptor-positive breast cancer.”

And I like this news best of all:  “Most women with triple-negative breast cancer never have a recurrence or a new cancer.”

Of course, I’m hoping to find myself in that group. All of us women hope we never have to be in any breast cancer group at all.  And I hope there are many other skeptics like me who wonder if focusing on awareness isn’t actually impeding progress in finding cures. For more on that discussion, read this column from the New York Times.

To be honest, I’d just like to eat my eggs and read my comics in peace.  Besides, there are so many more beautiful colors to choose from at this time of year.