And the Answer Is In

The phone rang promptly at 8 a.m. this morning and, still clad in my pajamas and robe, I noted the caller ID on the screen and knew the answer I’d been waiting for was on the other end of the line.

I let the phone ring a third time so I could acknowledge the moment I was in.  The next moment, when I picked up the phone, would change my future one way or the other.

Mercifully, the answer I got from the genetic counselor was the one I’d been hoping for.

Of the 17 genes tested from my blood sample, none showed a mutation related to breast cancer.  Not BRCA 1 or 2, not PALB2, not BRIP1, nor any of the remaining genes, too many to be named here, that increase the risk.

If you saw me today, you might have said that I stood a little straighter, breathed a little deeper, and felt a little lighter.  You often don’t realize how heavy a burden is until you can put it down.

 

Let the Eye Rolling Begin

Here comes October. And with it comes the once-again heightened focus on breast cancer. I am suffering eye strain just from the reports I noticed in the past two days — not from reading the reports, mind you, but from the involuntary eye-rolling that took place.

The first report correlates a woman’s skirt size with her risk of breast cancer. OK, we get it: increasing weight increases the risk, but really – skirt size? Given how arbitrary clothing sizes have become over the years, how can this be a reliable measure of anything?

In my college days, I wore a size 8 skirt. Though neither my height nor my weight have changed much in the 30-some years since then, I seem to have dropped a number of skirt sizes, and still somehow ended up with breast cancer. So here’s the conundrum. If clothing sizes for women have been decreasing over the years (so we can all feel better about ourselves), just what does it mean to say that increasing skirt sizes heighten a woman’s risk of breast cancer? The implication is not flattering.

One of the authors of this report says, “We were pleased to find an association between skirt size change, which is easy to recall, and breast cancer risk in post-menopausal women.”

Pleased to find? Easy to recall? Is there some part of a woman’s brain that automatically records her skirt sizes over the years? Would the authors have been displeased if they found no correlation? Do we really need to take this approach — focus women’s attention even more on body image, which is reflected, in this case, by clothing size?

Plenty of studies already document the association of increasing weight with increasing risk of breast cancer for post-menopausal women, so this report is nothing new. But being overweight before menopause seems to lower the risk of breast cancer, so this study makes even less sense. (It’s OK to be fat till you hit menopause? As if any of us knows when that’s going to happen.) And there’s no mention of the similar pattern seen in men who develop breast cancer, whose increasing weight also puts them at risk. Maybe that’s because, unless they wear kilts, they don’t know their skirt size.

“It’s a nice measure for women, something they can easily relate to,” said one of the study authors.

All together now, 1..2..3…, let the eye-rolling begin.

The second report, yet another study of alcohol consumption and the risk of breast cancer, comes from Canada. This study concludes that “Women who have as little as two drinks a day are at an increased risk of breast cancer. . .Those women — classified as low-level drinkers — are 8.5 per cent more likely to develop breast cancer than if they had abstained from alcohol, the study says. Hazardous drinkers, who have more than three drinks a day, face a 37 per cent risk increase.”

Photo courtesy of Getty

No word, however, on whether there’s any increased risk for those having more than 2 drinks but fewer than 3. (If I fill that third glass only half full, does that count?)

Again, this is not news. Dozens of studies have examined the relationship between alcohol and cancer risk (and not just breast cancer). Some have found a correlation, some have not, but even one of the authors of this study commented that “It’s hard to say in any one person that it was just alcohol” that leads to breast cancer. The news article also notes that, in Canada, “between five and 10 per cent of breast-cancer deaths are attributable to alcohol.”

Well then, what about that other 90% to 95%? It’s hard to see alcohol as a “major” risk factor – as one author of the study called it — with such skewed numbers. And what, then, do we make of a report that says having dense breast tissue is the “single greatest risk factor” women face?

What disturbs me most about these reports is the rampant splitting of hairs. Yes, weight and alcohol consumption have an influence on our health, and not just with regard to the risk of cancer. Now we can add the risks associated with a low level of vitamin D and possibly melatonin, which is tied to working night shifts and a disruption of circadian rhythms.

My point is that there is rarely just one factor at work, and the media does society no favors by randomly spotlighting isolated factors, especially the same ones over and over, to make headlines. So, instead of focusing on these recycled, guilt-inducing reports about breast cancer, I’d like to focus on some positive research currently taking place.

First, there’s the Legacy Girls Study, the goal of which is to “provide insight into the relationship between lifestyle factors, puberty and development, and breast cancer risk” in young girls. Given that the factors that lead to cancer often happen long before the disease appears, the information this study gathers should help us see how those factors interact and set the stage for disease development later on.

The second report comes from the UK, where researchers are analyzing DNA in an attempt to do away with chemotherapy treatments of cancer altogether. If they succeed in their work, they say, “We will look back in 20 years’ time, and the blockbuster chemotherapy drugs that gave you all those nasty side effects will be a thing of the past.”

Wouldn’t that be terrific?

With cancer rates in general expected to increase 57 percent in the next 20 years, it’s pretty clear that drinking less alcohol and counting dress sizes aren’t going to solve the puzzle.

October approaches. Expect to see the pink ribbons flying any day now.

I expect my eye muscles to be quite strong and flexible come November 1.

 

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The note below comes from a reader of my blog. I’m passing along this information about another women’s cancer concern at her request:

Power Morcellation May Be Doing More Harm Than Good!

Since September is Gynecological Cancer Awareness month, taking the opportunity to stay informed about possible risk factors can play a critical role in avoiding potentially harmful situations or even save lives. In the spring of 2014, the Food and Drug Administration (FDA) issued warnings to the medical community about significant risks associated with power morcellation, a technique used in certain routine gynecological procedures.

Power morcellation uses a tubular-shaped medical device known as a power morcellator to sever tissue during procedures. The tissue is then suctioned out of the body through an abdominal incision for removal. This technique has been used in certain laparoscopic surgeries, specifically hysterectomies and myomectomies, both of which are gynecological in nature. Hysterectomies involve the removal of the uterus and/or ovaries and myomectomies is the removal of fibroid tumors from the uterus.

An unforeseen complication due to power morcellation is the inadvertent impact on undetected cancerous conditions. Women with undiagnosed reproductive cancer such as leiomyosarcoma, an aggressive and life-threatening form of uterine cancer, that undergo power morcellation are at risk of triggering an acceleration of cancer growth. Cancerous tissue may be present during the process of fragmenting targeted tissue. The fragments may then be dispersed throughout the abdomen, resulting in an exacerbation of the cancerous condition.

The FDA issued an alert to hospitals, cancer centers and medical device manufacturers, warning the medical community of the harmful consequences of using power morcellators. Heeding the warnings, Johnson & Johnson, an American manufacturer of medical devices, pharmaceuticals and other goods, recalled its manufactured power morcellators, advising customers to avoid further use of the devices and return them to the company. Johnson & Johnson does not plan to resume the manufacturing of this device due to the potentially life-threatening ramifications of its use.

Such a catastrophic outcome to what should be a simple, minimally-invasive procedure is alarming to both the medical profession and to the patients undergoing treatment. The healthcare industry is here to help not harm. Despite this effort, unfortunate circumstances do develop. Being a proactive participant in one’s own health care is critical. Research and ask questions about diagnoses and treatment options, and opt for second opinions when necessary. Tragic situations may be avoided when patients stay informed and advocate for their rights to good care. The medical community needs to do its part as well: Providing quality, thoughtful and individualized care to its patients.

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An addendum: The Scar Project

October 10, 2014

In one last attempt in this post to stem the Pink Craze of October, I’m including here a link to The SCAR Project, a site that focuses on the experiences of young women facing breast cancer.  The photos on the site are moving, but not for the faint of heart.  If you’d like to donate to a worthy way to help document and, we hope, change the experiences of young women with this disease, whose numbers are growing worldwide, boycott the Susan G. Komen marketing ploy of pink drill bits and give to this project.

 

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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A Rite of Passage?

cancer 2011 (Photo credit: mike r baker)

Take a close look at the photos on the homepage of these two websites:

• The Hera Foundation: http://www.herafoundation.org/
• Good Wishes Scarves: http://www.goodwishesscarves.org/

What do you notice about those young, gorgeous women in the photos you see?

What I noticed is precisely that they are young, and gorgeous.

Off the top of my head, here’s a list of people I know of who have had cancer:

My grandmother, my father, my mother, one aunt, two uncles, two neighbors, four colleagues, two friends of my parents, the wife and the mother of our contractor, the father of one of my students, my sister-in-law’s brother-in-law, two colleagues of my sister, a friend and her father, another friend’s sister, the mother of my daughter’s friend, my physical therapist, and the father of my husband’s colleague.

Oh, and me too.

Twenty-seven people. Ten types of cancer — the predominant ones being breast, colon, and lung, an array that reflects the rank of cancer types in the United States. Some of these people have had more than one type of cancer, and some had a recurrence after many years of remission. Eleven of them have died. Of these 27, a third (including me) were under the age of 50 when they were diagnosed. From the look of those gorgeous women on the websites, cancer is increasingly common among younger adults.

A couple weeks ago, I came across a chilling statement in the People’s Pharmacy column, which is syndicated in many national newspapers. A writer commented, “When I told my doctor that I am reluctant to take Premarin for fear of cancer, she actually said that cancer is no big deal. It is just a way of life now: Get cancer, get treatment, and get over it…”.

So is this what we’ve come to? With no cures in sight for many of these cancers, and so many of us being given this diagnosis, has the experience of cancer become a rite of passage — like puberty or a midlife crisis?

With the ever-increasing numbers of people affected, the challenge is not to “get over” cancer, but find out why we aren’t working as hard to prevent it as we are to cure it. I’d like to start by eliminating the chemical stew our corporations have cooked up for us to eat, drink and breathe.

 

 

In Our Own Backyard

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.