Sunday, September 8, 2013

Sloppy Reporting Affects Too Much Cancer Writing


Reporters:  Precision is essential 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 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 form 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 that your doc’s more measured approach.

4. The generalizations you use can loop around to negatively affect your readers’ and listeners’ health.  I recently met 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. In fact, the prognosis for women who make it past that three-year mark is better than for women with hormone-positive cancer.   I have interviewed countless women who are 20 years past this diagnosis.  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 his 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 my book, Surviving Triple-Negative Breast Cancer.

• Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

7 comments:

Sue in Italia/In the Land Of Cancer said...

Lots of good points, particularly concerning the word 'lethal'. Lethal means WILL kill you not MIGHT.

Sharon Greene said...

I really appreciated this article. As a 4 time triple negative breast cancer survivor with a major BRCA 1 mutation, I have been alive 25 years since first diagnosis. I have been very lucky that none of my cancers metastisized. There is so much doom and gloom reporting about triple negative cancer that it is refreshing to see some balanced reporting.

Playfull Genie said...

The KGW.com report - "another five to eight years to live" - really put me in a major spiral downhill when I read it ... my poor Beloved came home to find me in pieces, despite all my test results coming back as clear the last 2+ years!

Thank you SO much for such an excellent article - journalists, PLEASE take on board these wise words; all it takes is just one word out of context (or, in the case of "lethal", just plain wrong) to put us warrior goddesses on a downward spiral :(

Gabrielle said...

Thank you, thank you for this story. I was diagnosed with tnbc last january and I just finished my last treatment (radiotherapy) after a mastectomy and chemo. I feel great and very healthy, never was sick very long after each round of chemo. I hope to see my babies grow big, graduate and marry.

But the stories about tnbc in The Netherlands are very negative. Athough I work in a medical profession,it's hard to find any positive note about our disease. I'm glad I found your blog which gives so much info but also encouragement.

Keep up the good work!

Susie Waki said...

I was so thrilled to find this post. I was diagnosed with TNBC in January 2015. I've only read horror stories about the disease. This is the first time I have found hope for the future. Thank you!

Unknown said...

Hey Susie- next month my wife is coming up on her two year anniversary and is doing fine. One more year and we will start to breath a bit easier. She was originally staged 3b, >5cm, 10 nodes positive and responded to treatment. There are a lot of stories out there. all the best. And thank-you Patricia for the post.
Greg.

Sheila Cota said...

Thank you for the positive words, I am also going through triple negative breast cancer and from all I read it was a death sentence, I am having great progress through chemo, mastectomy and now starting radiation, I feel that I am fighting and winning so far, thank you for the positives, this can be survivable, hand in there all of you and stay positive <3 <3 <3