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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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

In Our Own Backyard

English: Statue of a dragon guarding one of th...

Image via Wikipedia

This New Year’s Day brings us into the Year of the Dragon, and marks my second-year anniversary from the end of chemotherapy.  One more year and my risk of recurrence drops considerably.  But while I think of my great good fortune, in the past month, I have learned of four friends or acquaintances who are now facing a cancer diagnosis for the first time, a somber and increasingly common experience.

In my last post, I summarized global cancer statistics and trends. This time, I’m considering my own proverbial back yard.  The data you see here relate to cancer in the United States and come from Cancer Facts & Figures 2011, published by the American Cancer Society (ACS).

According to the authors of this booklet, “[t]wo major classes of factors influence the incidence of cancer: hereditary factors and acquired (environmental) factors… Environmental (as opposed to hereditary) factors account for an estimated 75%-80% of cancer cases and deaths in the US.”  This percentage breaks down as follows:

  •  Exposure to carcinogens in occupational, community and other settings – 6%
  • Tobacco smoking – 30%
  • Poor nutrition, lack of physical activity, and obesity – 35%

Add up these numbers (71%) and you’ll see that the specific environmental causes of a good number of cases are still unexplained.  (BPA? Pesticides? All those chemicals we ingest or pour into our water sources every year?)

The booklet goes on to note that “even a small percentage of cancers can represent many deaths: 6%…corresponds to approximately 34,320 deaths.”  And “the burden of exposure to occupational and environmental carcinogens is borne disproportionately by lower-income workers and communities, contributing to disparities in the cancer burden across the population.”  The ACS figures that, if racial and economic disparities in the United States were eliminated, there would be 37% fewer deaths from cancer, leading the agency to conclude that poverty is a carcinogen.

Elsewhere in the book, the authors note that “questions remain about the role of exposures to certain classes of chemicals (such as hormonally active agents) during critical periods of human development.” Answers to these questions might eventually explain why birth control pills have not been conclusively tied to cancer but hormone-replacement therapy after menopause has.

Here are some interesting data on the most prevalent cancers – lung, prostate, and breast:

Lung cancer alone is responsible for 27% of all cancer deaths, and is the number 1 cause of cancer deaths for both men and women. The ACS notes that, “[s]ince 1987, more women have died each year from lung cancer than from breast cancer.” And yet, we don’t see nearly the same amount of energy put toward races to cure lung cancer as we do for breast cancer. (See more about this disparity here).

This is just one of many examples of how data about health and disease is skewed by marketing forces. Breasts and the color pink are palatable (though honestly, I’m tired of women being defined by their breasts for any reason and pink being chosen as the color to represent women). Apparently, lungs and their color – pearl – are not so sexy.  Yes, more women are diagnosed with breast cancer, but more die of lung cancer.

Prostate cancer is the second leading cause of cancer deaths in men. Anticipated new cases for 2011 total 240,890, with 33,720 deaths. African-American men and Jamaican men of African descent have the highest rates of prostate cancer in the world, and the disease is more prevalent in North America and northwestern Europe, less so in South America and Asia.

Breast cancer is the second leading cause of cancer deaths in women. For 2011, the ACS estimates 230,480 new cases of invasive breast cancer among women, 2140 in men. This number does NOT include the type referred to as DCIS, which is not usually invasive, and has been referred to as the “good” breast cancer.

Notice the statistics:  In 2011, more men will have been diagnosed with prostate cancer than women with breast cancer, but fewer men die of prostate cancer.

The list of risk factors for breast cancer contains the usual suspects (obesity, physical inactivity, and alcohol, which acts like an estrogen in the body).  But I see that the ACS is finally listing dense breast tissue as a risk factor along with high bone mineral density and a breast irregularity called hyperplasia (especially atypical hyperplasia).  They also note that there is some evidence that women who work night shifts seem to have an increased risk of breast cancer.

But as always with breast, and perhaps other cancers, there is a caveat.  These factors relate primarily to the hormone-driven breast cancers (ER+, PR+ Her/2-, or any combination of these).  Those of us dealing with the triple-negative type might have an entirely different set of risk factors that has not yet been determined.  I’ve seen preliminary reports that a too-low body mass index and having had children at all are risks for triple-negative disease.

By state, the incidence of breast cancer pretty much follows the trend of national totals for all types of cancer, with California and Florida at the top of the list, followed by New York and Texas. Here in Washington, the projected number of new cases of breast cancer for 2011 is 5,630. In my native Ohio, it’s 8,970.  The number of deaths from breast cancer are also similar, led by California and Florida, then Texas and New York.  In Washington, that number is 800; in Ohio, it’s 1730.

In the flurry of all these numbers, don’t get confused.  The numbers by state may reflect only that one state has a higher population than another, not that there are necessarily more risks tied to location. The number of new cases for each state is pretty high, but the number of deaths is significantly lower, which only means there are many, many survivors of breast cancer out there.

Certainly we know by now how bad smoking can be for us, but here are some interesting details about the exposure to second-hand smoke: “Each year, about 3,400 nonsmoking adults die of lung cancer as  a result of breathing SHS [secondhand smoke]” and “SHS causes an estimated 46,000 deaths from heart disease in people who are not current smokers.”  Perhaps this is because SHS contains about 7,000 chemicals, “at least 69 of which cause cancer.”

In my home state of Ohio, the overall estimated number of new cancer cases for 2011 is 65,060.  In my adopted state of Washington, that number is 35, 360.  Quite a difference, but some of that has to do with population (Ohio has about 11,542,645 residents while Washington has 6,664,195).  The state with the highest overall estimate is California (with 163,480 estimated new cases), followed by Florida (113,400) and Texas (105,000).  Wyoming has the smallest number (2,680).

There is much more information and data in the ACS booklet, so much as to be overwhelming.  To make better sense of the numbers, here’s a wider perspective:

  • Heart disease is still the most common cause of death in the United States, with cancer second.  Cancer has killed about 499,564 people so far this year, but heart disease has killed 593,819.
  •  About 1500 people die of cancer each day, compared to about 2200 for heart disease.
  • As of January 2007, the estimated number of cancer survivors in the United States is 11.7 million, which means about 4% of the population has had the cancer experience.

According to the Stand Up to Cancer organization, 1 out of every 3 women and 1 out of every 2 men are at risk of developing cancer in their lifetime.  I guess I’m one of those who is “experienced.” Now, I’m looking to that dragon to protect me.

Signposts in the War Zone

La jungle de Langkawi

Image via Wikipedia

When describing the emotional effects of getting a cancer diagnosis, Michael Lerner of the Commonweal Cancer Help Program put it this way: “Receiving a cancer diagnosis is like a soldier being dropped into a jungle war zone without a map, compass or training.”

An apt description.

Except that a soldier at least has weapons.

Thankfully, in the jungle war zone of cancer are guides, who appear in various forms: the oncologists and radiation specialists who direct your treatment, the infusion nurses who explain what will happen along the way, fellow patients and cancer survivors who can tell you their stories and really understand what you might be experiencing. They have cleared your path through the jungle.

But also along that path are a variety of signposts, some helpful, some not, and it is often only in hindsight that the value of those signposts is clear.

Unfortunately, some of the signs that the experts post on the jungle path point the wrong way.  For example, a recent report from the Yale Cancer Center determined that between 10% and 20% of breast cancers classified as estrogen-receptor-negative might actually be positive. In an already chaotic landscape full of noise and confusion, such a misdiagnosis only heightens your fear and sense of helplessness, and can add a hefty measure of anger that you carry with you as you retreat to find the right path.

At other times, a signpost might be erected only to be taken down later on. Earlier this year, the FDA revoked its approval of Avastin for patients with breast cancer, saying that it was not safe or effective.  Avastin is a chemotherapy drug used to treat a variety of cancers, but according to the FDA, the risk-benefit ratio for those with breast cancer doesn’t merit use of the drug. So those who had luck in following this signpost no longer are able to, and that includes the women with triple-negative cancer who did benefit from its use. This dilemma, however, applies only to women on the jungle path in the U.S.  Avastin is still approved for use in breast cancer patients in 84 other countries.

Sometimes, a signpost is erected too soon and serves only to provoke anxiety. A report from the UCLA Medical Center links high levels of stress to the spread of cancer. Besides inducing more stress about stress, the additional irony is that this signpost is only for mice as yet, not humans. So too for the signposts about the effects of ACE inhibitors and beta-blockers and chondroitin sulfate.

There’s something to be said for posting signs of hope along the path, as these reports do with their results. But with that hope comes the risk of disappointment when the findings of further studies serve to dismantle these signposts.

And always, along any path, some signposts might even be missed.  Back in June, a briefing in the journal Cancer reported that almost half of women with advanced breast cancer over the age of 65 “are not receiving post-mastectomy radiation treatment, despite the publication of major guidelines recommending the therapy.”

On my particular path through the jungle, two signposts directed the type and frequency of my chemotherapy.  At the time I underwent chemo, the largest signpost read ACT – Adriamycin, Cytoxan, and Taxol – the only chemo cocktail available for those of us with triple-negative disease.  By the time I had chemotherapy, however, a new signpost had been added to this one, and it read “dose-dense therapy,” a different way of administering the drugs.  Instead of receiving one large dose of drugs every 3 weeks, as is customary for many types of cancer, I received a smaller dose every week for 24 weeks.  The premise of this “metronomic” dosing is that the cancer would have less of a chance to regenerate with a steadier dose of drugs and the side effects would be minimized. I followed these signposts because my guide, my oncologist, pointed me that way.

In hindsight, it’s been a relief to find that these two signposts did indeed have merit.  A study of Adriamycin and Cytoxan, from a group of drugs called anthracyclines, used in conjunction with a taxane drug are an effective treatment for triple-negative disease, but not for other types of breast cancer. The review noted that the combination works best in adjuvant treatment—that is, chemo after surgery (rather than before) – the approach the doctors used for me. Another study determined that dose-dense chemotherapy is most effective for hormone-negative breast cancer, with better overall and disease-free survival. These studies validated the merit of two of the signposts on my path. With a sigh of relief, I can walk a little taller on the road.

Those of us affected by cancer, either directly or indirectly, will always be in the jungle because cancer and the treatments for it are always changing, always confusing, and it’s difficult to get your bearings. We note the signposts and choose the direction, our only weapons the health care workers who point the way and our own stamina and determination.

Wegweiser im Bramwald

Image via Wikipedia

 

You Don’t Want to Be Like Me

A glass of port wine.

Image via Wikipedia

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.