To Soy or Not to Soy

Edamame_with_saltMy apologies to Shakespeare for the skewed headline, but that’s the first thing that came to mind when I read the results of a recent report on a perennially confusing topic for those of us who have had breast cancer: whether eating soy products is helpful or harmful.

Some studies show that, because of its estrogen-like properties, soy products should be avoided by people with hormone-positive breast cancer. But there’s evidence from East Asian countries that eating soy might actually be protective, as the rates of breast cancer there are considerably lower than those in the U.S. So which is it?  Is soy helpful? Harmful?

The study came to  my attention in the March email newsletter from the Cancer Prevention Institute of California, whose name tells you exactly what their mission is. Their slogan: Preventing Cancer. Promoting Life.

The newsletter reads:

Eating a soy-rich diet found to reduce mortality for women with more aggressive breast cancers

Consuming more foods rich in isoflavones, a compound primarily found in soy beans, was found to decrease the risk of death of women diagnosed with some types of breast cancer. For all breast cancers combined, mortality was reduced by 21 percent. When considering specific types of breast cancer, lower mortality was found only for women whose tumors lacked estrogen and progesterone receptors. Mortality was 51% lower for women with hormone receptor negative breast cancers which are more aggressive and have poorer survival. Lower mortality was only seen in women who didn’t receive endocrine therapy as a treatment for breast cancer.

To conduct this study, researchers analyzed data on 6,235 American and Canadian breast cancer patients from the Breast Cancer Family Registry, a National Cancer Institute-funded program that has collected clinical and questionnaire data on enrolled participants and their families since 1995.

To their credit, the CPIC took part in the study and one of their researchers collaborated on it. Their report can be found here, with a link to the study published in the journal Cancer.

The study doesn’t entirely solve the riddle of whether soy can help cause or prevent breast cancer for everyone. But for those of us in the triple negative group, it appears eating soybeans can be helpful. The golden words from the summary are: Mortality was 51% lower for women with hormone receptor negative breast cancers.

So break out the edamame. And while you do, listen to a blues singer I just discovered, who puts her soul into this piece for a cancer fundraiser:

Starbucks, Sins, and the Lies about Breast Cancer

I was talking yesterday with friends about the headline news that Starbucks is giving their employees free tuition to attend college.

At first glance, this seems like a fantastic move, exactly the sort of thing corporations ought to do for their low-paid employees, the ones who do the hard work that guarantees those high executive salaries.  But the fine print of the agreement divulges the lie of the headline.  The tuition certainly isn’t free, and it’s not actually being paid by Starbucks. The more we dig below the glossy surface of the story, the more this “deal” looks like a marketing ploy by Starbucks and Arizona State University. So it turns out that the initial announcement and headlines were, essentially, a lie.

And so I got to thinking, what sorts of lies lurk under the surface of the news we read about breast cancer?

When it comes to lies, there are two kinds: lies of commission and lies of omission. Lies of commission are deliberate falsehoods told to cover up the truth.  Lies of omission neglect to disclose (or maliciously withhold) information and thus reshape the truth. The Starbucks story is an example of both – a headline that gives a false impression, and a withholding of details that disclose the full picture.

When it comes to breast cancer, the lies tend to be ones of omission rather than commission, and they are not usually intended to be malicious. Part of the problem in reporting on breast cancer is that the story is too wide and deep to be covered in the space of a computer screen.

The first lie of omission is that breast cancer is one disease. To date, researchers have defined 6 major types of breast cancer. These groups are then divided into many subtypes according to hormone receptivity, cell type, and other factors. Unfortunately, the information published about breast cancer in the mainstream media implies that all women with breast cancer are in the same boat, rowing with the same oar, dealing with the same disease, which is simply not true. Most studies are done on women with hormone positive cancers, which leaves people like me (with the triple negative variety) and those with other types (inflammatory, lobular, DCIS, etc.) out of the picture. Together, we make up as much as 25% to 30% of breast cancer patients, but yet the focus of news is on the hormones.

Now, take a look at the list of risk factors for breast cancer currently available on the Mayo Clinic website. (This list has changed significantly since I first was diagnosed 5 years ago.) Mayo is a highly regarded institution, and rightfully so, but even a perusal of the solid information presented here inadvertently introduces the sin of omission.

The fourth and fifth items on the list are a family history of breast cancer (mother, sister or daughter) and a genetic mutation. But neither of these items mentions the male side of the equation – men with breast or prostate cancer.  The genetic mutations that can lead to breast cancer in women can also lead to breast and prostate cancer in men. So to focus only on female relatives is to omit the real possibility that the genetic defect can come to you through your dad.

But the bigger lie here is the impression that many breast cancers are hereditary and this lie is heightened by celebrities who are opting for preventive mastectomies. In fact, 85% to 90% of breast cancers are *not* hereditary.

This list also says nothing about breast density, even though legislation in 17 states now requires doctors to tell women that they have dense breast tissue. We now know that mammograms, already questionable as an effective means of screening, are even less effective in finding tumors in dense tissue, and there is a suggestion that dense tissue itself might be a risk factor. The controversy on this topic will continue, and Dr. Susan Love interprets the current situation well.

The list also says nothing about the use of oral contraceptives, which has been a complex and controversial topic for a long time. Some studies have found a connection between use of the pill and breast cancer; some have not. Because of the changing nature of birth control pills over the years, research on the effects is rather like shooting arrows at a moving target.  Still, the question is worth addressing, in light of a recent study.

The Mayo list does raise the issue of childbearing, another area clouded with complexity. According to the list, having children late in life or not at all is a risk factor. But the finer points of this factor are explained by the Komen Foundation as follows:

“In general, women who have given birth to more than one child have a lower risk of breast cancer than women who have never given birth. However, women may not get this protective benefit of childbearing for triple negative breast cancers. On the other hand, although having a child at a later age tends to increase the risk of breast cancer, it does not appear to increase the risk of triple negative cancers.”

So it seems this risk factor might not actually apply in many cases, and so,  out of necessity, the site concludes by saying “these topics are under active study.”

There are some unusual omissions from the Mayo list: that risk increases with height, and that cancer occurs slightly more often in the left breast than the right.

Further down the Mayo Clinic’s risk list is exposure to radiation as a treatment during childhood.  The sin of omission here concerns the radiation women are subjected to through mammography. Most of the current research still indicates that the amount of radiation from mammograms is not of concern, even cumulatively. So this omission actually works against women’s peace of mind.

With regard to risk factors, the biggest lie of omission is that any of these lists is comprehensive. (The Mayo list does at least state that many women who develop breast cancer have no known risk factors.) It’s easy to assume that, if none of these factors fit you, you’re safe.  That’s what I thought when those telltale signs showed up in me. Before my diagnosis, I had only two of the risk factors on this current list. And of the risk factors for triple negative cancer – younger age, African American heritage, genetic mutation, obesity – I have none. As a short, slender, middle-aged, white woman with no previous or family history or genetic mutation, who has eaten well and exercised for years, with normal hormonal changes and not taking HRT, I was not a likely candidate for breast cancer, much less the triple-negative variety. And I know of many other women in this same boat with me – not at obvious risk.

So here’s the obvious point:  if you’re female, you’re at risk.

Another lie is that women can prevent breast cancer through the hat trick of diet, exercise, and taking tamoxifen as a preventive, which implies that we have more control over the development of breast cancer than I believe we do. If you read only the headline and lede of this article, you’re given the impression that it’s easy — eat well, exercise, and take tamoxifen if you’re at high risk. The article never mentions that there are likely environmental and chemical influences at work, things that are out of control, things that Rachel Carson – who herself died of breast cancer — warned us of back in 1962. The organization that bears the name of her landmark book makes those environmental threats clear.

The underlying message with this disease is that it is somehow the individual’s fault if she gets cancer, that cancer is out there and it’s just up to us to figure out how to avoid it, like a pothole in the road. This continues our “do-it-yourself” and “blame the victim” ways of thinking. Although we do generally have control over how we live, there has been a constant focus on diagnosis and treatment, with more and more tips for prevention – all of which is valuable. But this approach omits a clearer focus on the causes and what we’re doing collectively, at the societal, environmental, and political levels, that leads to harm.

Medical researchers do the best they can to find the answers to our many health problems. But much of this research takes years and, because it usually takes place in hindsight, after we’ve defined the problems, it is at best always a step or two behind reality.  Despite what researchers actually do find and accomplish, when this information is brought to light by the media, it is often skewed to make headlines or garner hits on a website. The ever-increasing pressure for media to be first to the story means that the critical and often the most important news is passed over because it isn’t easily carved into the crystal of a sound bite.

To avoid the sins, whether of omission or commission, it’s up to us to read between the lines and ask what’s missing from the information published about cancer, breast cancer, and even Starbucks.

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IF you like what you read here, follow me on my other blogs:

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And if you’re looking for coaching or editing of your own writing, you might be interested in my professional services at The Write Place.

 

 

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.

Of Mice and For Men

This week, we send our thoughts, prayers, and maybe our dollars too to those on the east coast of the United States who are suffering such devastation from hurricane Sandy’s wrath. Homes, businesses and lives are gone; many people’s futures have been forever changed. And though I’m a long way from the damage, my own life may be affected by some particular effects of the storm.

Who would ever think that a hurricane would have anything to do with breast cancer? They are two very different storms. One can be predicted, blows through externally, but (mercifully) dies away. The other sneaks in unannounced, wreaks its havoc internally, and must be driven away. But each one holds its victims in a lingering grip.

Along with the many buildings Sandy destroyed was a laboratory at New York University, which housed some very important mice.  These mice have been specially bred for particular experiments, among them research for cancer.

Mice such as these have done more than their fair share to help us humans find a cure for breast cancer (and other diseases). They’ve been called on to chart metastasis. They helped researchers find a drug that targets an inflammatory response that helps fuel triple negative breast cancer.  And they’ve helped us discover that the herpes virus and something called an HDAC inhibitor can destroy cells of triple negative breast cancer, the type of cancer I had.

So here’s to the mice (and the many other creatures), whose lives have so often been sacrificed in the service of humans.

But as the hurricane and the Pink Month recede into the distance, I would be remiss to overlook another topic related to the storm of cancer — the focus this month on men affected by prostate and testicular cancer.  As October directs our attention to breast cancer awareness, November has been designated the month for prostate cancer awareness.  The numbers tell the story — even more men are affected by prostate cancer (1 in 6) than women are affected by breast cancer (1 in 8).

So here’s to the men, who have their own cancer storms to contend with. If you’re a man and you’d like to help raise funds for research (some women might be able to participate as well!), here’s an ingenious and positive undertaking.

English: Mustache Catalog

Taking a Detour: The Making of a Hypochondriac

Pukkelpop 2006 tent camp.

Image via Wikipedia

Day 1:

So I’m tooling along Cancer Road. Don’t want to be here, but at least I’m past the multicar pile-up of surgery, chemo and radiation, and I’m picking up speed. Hope the rest of my trip is event-less. Man, it’s hard to drive with your fingers crossed.

Switching lanes now and – oops – wait! How did I end up on this ramp? I’m not supposed to get off this highway for another year or so, when I get to the exit marked “Dramatically Decreased Chance of Recurrence.”

Wait — what’s that brown sign? Looks like the ones that point to scenic attractions. Maybe a welcome sign?

Well, maybe not.

Welcome to Camp Hypochondria

No pets allowed

Aw, rats.

Somebody warned me about this place. A guy on the Road ahead of me. He said he got stuck there, but I didn’t have a clue what he was talking about then.

So here I am now, parked in the middle of a bunch of tents.

Looks like one of those Occupy campsites that were recently closed down. Maybe I’ll stay here for awhile and see what’s going on. I’ve got a tent in the trunk.

Day 2:

Here I am, lying awake on my cot.

Ouch!

What is that?

That ache in my wrist that woke me up.

Surely it’s not…

I get up quickly and look for my checklist, the one I made after talking with the oncologist at  my last check-up. There it is, tucked away in my special Cancer Survivor backpack, the one I assembled after the end of radiation. I carry it around with my water bottle and dietary supplements. It’s got a special pocket for Good Humor.

Let’s see – what did the oncologist say?

Cancer doesn’t attack the joints, or recur below the elbows or knees. (“Everything else is fair game,” he said.)

Oh, so I guess that pain in my wrist is simply, what, arthritis? Or – no – maybe it’s degenerative joint disease, one of the side effects of chemo the naturopath told me about.

Or, maybe I just slept in the wrong position.

But just for security, let’s continue down the list.

The doc said that, if it spreads, breast cancer usually heads for the brain, lungs, bones, or liver.

So, let’s see:

No headache. Guess my brain’s OK (relatively speaking). Check.

Lungs? No cough or shortness of breath. Check.

Bones? No pain. Except for that wrist. But that’s a joint AND below the elbow. Double check.

And I’m hungry.

That’s a good sign. A good appetite and steady weight indicate a healthy liver.

But just to be sure, I’ll check my weight on the bathroom scale. I just happen to have one of those in my backpack too. (Mary Poppins would be so proud.)

Two pounds heavier.

What?!!!

I never gain weight (well, except for those pregnancies and that one summer at Girl Scout camp).

Uh-oh. Weight gain. Isn’t that one of the signs of ovarian cancer?? Sometimes breast and ovarian cancer are linked.

Rats — No trapdoor I can open into my body for a look inside.

OK, quick – pull on my shorts. If the waistband’s too loose, it could be weight loss from liver metastasis. But if it’s too tight — abdominal swelling can mean cancerous ovaries.

But these fit just right.

Oh.

Must have been that Halloween candy my son gave me from his trick-or-treat bag, and all that extra sitting writing blog entries like this one.

I dig again through my backpack, looking for what, I’m not sure. And I see it in writing – a folder with a label that reads “cancer.”

Oh wait. No. That says “career.”

Silly.

Last week I saw something written on my to-do list and I thought it too said “cancer.” But it was only my note to myself to cancel the newspaper. Yeah, I’d like to cancel cancer too.

I glance down and notice that small mole on my right calf. It disappeared during chemotherapy, but now it’s back.

Oh right, that’s below the knee, and therefore off limits.

Unless, of course, it’s . . . skin cancer.

I remind myself, as the oncologist said, that if today’s pain is new AND above the knees and elbows AND progressive, I should start the countdown. If the pain is still around after 2 weeks, I’m supposed to call him. I am amazed at how many pains can come and go from a body in the course of 2 weeks.

A few months ago, it was the lymph node under my jaw that was tender off and on for a month. Pressing on it (of course I did!) irritated my ear and sinus and I had some tingling along my nose and lips. I was sure this meant a brain tumor that was affecting my facial nerve. But then the air dried out and the molds disappeared and the node retreated into obscurity.

And that tender spot in my abdomen last fall turned out to be just a bladder infection.

If nothing else, all these false alarms are a test of how well I know my own anatomy. In the misguided process of trying to diagnose myself, I’ve discovered just where my liver and pancreas are and what they do. And now that I’m in menopause — not through the natural gradual descent but from a shove over the cliff by that villain chemotherapy – I wonder just where are those ovaries anyway? Everything in my body seems to have shifted. The joints work differently. Even my teeth don’t come together quite like they used to.

A yoga teacher once told me that, if we are spiritually healthy and mature, we grow in awareness. I don’t think this is the kind of awareness she meant.

I resent the way cancer has hijacked my thinking.

Hypochondria: It’s just another word for obsession.

“Presque tous les hommes meurent de leurs remèdes, et non pas de leurs maladies.”

Nearly all men die of their remedies, and not of their illnesses.

Molière: The Imaginary Invalid (1673), Act III, sc. iii

A Camp Fitch Tent Group

Image via Wikipedia