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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Test Anxiety: The August Installment

This week’s mail brought two folded papers full of numbers.

These numbers are the results from last week’s visit with my internist for my annual check-up. Height, the same. Weight, the same. Cholesterol, TSH, vitamin D levels – all normal. The phlebotomist was so good I barely felt the needle stick in my arm — the right arm, ALWAYS the right arm, because it was the left side that was traumatized by the surgery and radiation. I still have to remind myself to tell the doctor’s assistant to use the right arm for the blood pressure cuff or needle. It’s not yet habit for me to remember this myself, and I don’t need to tempt another onset of lymphedema.

I didn’t expect to see anything scary on the report from my internist.  After all, I am in quite good health (oh, except for that bout with cancer).

The previous week, I anxiously awaited the results of the annual mammogram and MRI scan. The current guidelines for mammograms vary depending on whom you ask. Anyone who’s interested in or affected by these guidelines likely knows the ongoing controversy around the usefulness and timing of the test. Agencies and physicians change their minds frequently about what’s appropriate.

Given that mammograms are less reliable in people like me who have dense breast tissue, I am extremely reluctant to put my faith in them, especially since they did not show the tumor that caused me so much grief. Still, my oncologist insists I have one each year, and my radiologist says that, though it isn’t perfect, it’s the best test we have. (To which I say, it’s about time we come up with something better.)

So, every year around this time, I trek to the radiology center to undergo the test. Four years past my diagnosis, my anxiety about the test now only kicks in as I don the cape in the dressing room, not several days beforehand. And because the same radiologist has been viewing my images and so knows me (or at least my breast tissue) pretty well, he makes a point of coming to tell me the results before I can even leave the building.

They say your diagnosis is only as good as the radiologist reading the images. I’d also say, regardless of the diagnosis, the effect of the results on the patient is only as good as how (and how soon) the radiologist delivers them. The longer the wait, the higher the anxiety spikes.  A face-to-face conversation or a phone call the same day trumps a form letter a week later, even when the news is good.

People sometimes wonder why someone would not go to see a doctor if there is something wrong. It comes down to this – if you ask a question, you’ll usually get an answer. Anxiety is what tells you the answer might not be what you hope for. If you never ask the question, you never have to hear the answer, and so some people never ask.

Immediately after Dr. P came to report the results to me (“Everything looks OK”), I was taken to the other side of the building for an MRI, something I’ve asked for each year since the end of treatment. It’s not customary to have an MRI unless the doctor suspects there’s something to find, and the MRI has some inherent problems as well, but I have asked for it precisely because the mammogram is unreliable for me. And my oncologist has readily agreed. This is no small agreement as the test costs about 2 thousand dollars (which alone spikes the anxiety level) and, as my oncologist reported to me last time I saw him, he’s starting to see insurance companies refuse to cover the MRI unless the patient has current signs or symptoms needing attention. I can understand insurance companies wanting to cut unnecessary costs, but peace of mind is always necessary. With the results of the mammogram coupled with the MRI, I can be reasonably sure that we’ve got a good picture of what is (or isn’t) going on.

Lucky for me, our current insurance approved the test — at least for this year — and Dr. P reported, when he called the next day, that “All looks good this year.”

This year.

With this good news, and the normal numbers from the internist this week, my anxiety has dropped from stratospheric to just atmospheric, where it should stay till my check-up with the oncologist in November.

Reprieve?

In the mail a few days ago came the report of the results from my recent MRI. Along with the mammogram, the MRI is one of the ways the medical folks keep an eye on me after my cancer treatment. I am more than 3 years past the day I received the breast cancer diagnosis, and 2-and-a-half years past the end of chemotherapy. That’s when the countdown, for me, to that critical 3- and then 5-year mark began.

The MRI may seem like overkill, especially with its added expense and the dogged determination of the medical community to promote mammograms. But it’s necessary for me because the mammogram tends to fail those of us who have dense breast tissue — a factor that is finally starting to show up on lists of risks for breast cancer. Besides the annual mammogram and MRI, I visit my oncologist every 6 months for blood tests and a review of my status. My last 6-month check-up, back in April, showed only some lingering whacked-out red blood cells.

At that time, I had developed a new pain in my right abdomen, one that had hung around for a few weeks, consequently triggering my internal alarm. The pain had passed the 2-week mark I had been coached to observe. And so I followed the oncologist’s suggestion to have an abdominal ultrasound, which fortunately, like the mammogram and MRI, showed nothing wrong. (Cancer, the “gift” that can keep on giving — you just don’t know when.)

Although my body seems to be recovering well, is actually intent on reclaiming its good health, I am still struggling with the mental, emotional,and spiritual recovery. My body has its own mind. The mind itself needs to catch up.

The nurse had already called me to report the MRI results, but that wasn’t enough. I needed to see the full report in print on the page in my hand.  And in that small space of silence after reading the results, when I let out the breath I had been  holding, a tiny thought crept in. A new and, for me, startling thought.

It just might be possible to be cured of this disease.

The body will know when that happens. The mind might never be sure.

In Our Own Backyard

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

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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.

Put Down that Cell Phone

Various cell phones displayed at a shop.

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Put down that cell phone, lest you end up with a brain tumor.

So says the International Agency for Research on Cancer (IARC), an agency within the World Health Organization (WHO), which just published a report that cell phones are a “possible” carcinogen. The 31 international scientists involved in this research have concluded that excessive use of cell phones may increase your risk of two types of brain tumors:  gliomas, which are malignant, and acoustic neuromas, which are not.  (Malignant or not, a brain tumor is something you’d rather not have.)

This news, of course, made headlines in newspapers and on broadcasts around the world. After all, the IARC estimates that there are 5 billion cell phones in use globally, and many of us are implicated in that number.  According to the Huffington Post, the declaration about cell phones puts these devices in the same category as coffee, pickled vegetables and talcum powder, all of which are designated “possible” carcinogens.

Just to clarify, the WHO designates three levels when researching substances related to cancer:  possible, probable, and known.  Like coffee and those pickles, cell phones possibly cause cancer, while chemicals used by hairdressers and barbers probably do, and alcohol, tanning beds, and hormone replacement therapy are definitely known to cause cancer.

So what are we to make of the pronouncement about cell phones?

If the conclusion is so indefinite, did the news really deserve the headlines it garnered?

As with much of the news related to cancer, breast or otherwise, the answer is complex.  Maybe cell phones do cause cancer, maybe they don’t. To solve the complexity, there needs to be more research and studies of longer term. Until such studies are concluded, the truth is anyone’s guess, and the volumes of discussion that have taken place just since the announcement a week ago point out the difficulty in coming to any easy conclusions.

Given the numbers of substances and factors that might lead to cancer, perhaps the best we can do is pick which evils to avoid.  Giving up cigarettes seems obvious, and maybe you can forego your morning cup of joe. But even picking among the evils is hard when you consider that Tamoxifen — the prominent drug taken by women with estrogen-positive breast cancer to prevent recurrence — is also a known carcinogen. And one of the risk factors for breast cancer that has not yet been widely recognized is dense breast tissue, which is not something you can choose to avoid.

More complexity.

More confusion.

What’s an enlightened person to do?

The best I can manage is to keep my eye on the research that addresses my specific variety of cancer and cancer research in general to follow the studies and see their results (more on that in the next post).

In the meantime, I’ll step away from the cell phone.