Forget the Pink: The Real Cure is Prevention

Here it is again, October, which is designated breast cancer awareness month. This is the month when all is awash in pink.  At this point, plenty of bloggers have pointed out the hypocrisy and pitfalls of the “think pink” movement, so I leave it to them to continue to beat that drum.

Today, I’d like to present two sources that are helpful in understanding and combating breast cancer. The first is an interview on the NPR program “Fresh Air,” in which Terry Gross interviews Dr. Elisa Port. Maybe some of you have already heard this interview. I happened to catch it during drive time around town. Although Dr. Port doesn’t cover all the intricacies of the various types and treatments for breast cancer, she gives an up-to-date overview of the topic, including a good discussion of the current state of research and treatment related to genetic mutations. I found the interview helpful because it is grounded in the facts, not the myths and rumors, about breast cancer. You can find the interview here.

The second source appeared in my e-mailbox just this evening. I don’t know the fine details of the Rethink the Pink organization behind this website, but I was ever-so-glad to see the focus on prevention beyond the usual “diet-exercise” discussion. This site addresses the environmental factors related to breast cancer, specifically the chemicals in health and beauty products that have never been tested or specifically labeled as carcinogenic. Caveat: It does promote products, but with the purpose of giving alternatives to the usual chemical-laden products we find on store shelves. You can find the site here.

Enough of the pink parties. Let’s get serious about real prevention that offers effective alternatives and doesn’t make us feel guilty.

Ordinary Moments

About 6 years ago, I noticed changes in my breast that eventually led to a diagnosis of triple-negative breast cancer. Six years later, I am ever grateful for the simple fact that I am alive.

But over these past 6 years, I’ve been plagued by the idea that – having survived a potentially deadly disease — I should be doing greater things with my life. This idea, I suspect, is one of the unmentioned after-effects of cancer, promoted by all the smiling faces on survivorship posters, the Facebook people who post their travel photos, the TV ads that show active people feasting on the very air. Look at all those survivors  – starting foundations, running marathons, changing the way the world spins.

And here am I, doing the dishes, going to the grocery, taking the car in for repairs. These are the activities that occupy what seems to be an excessive percentage of my days. I don’t know how to start a foundation. What’s more, I don’t have the drive or energy to find out. I gave up running long ago, a casualty of laziness and sensitive joints. Sometimes, it’s all I can do just to put three somewhat healthy meals in my mouth in the course of a day.

Make no mistake: I have great faith and belief in the everyday work I do – teaching, writing, looking after my family – simply because I believe these activities are important, if only to me. (No one has ever accused me of lacking ego!) But always there is the nag in the back of my head who says: “Why aren’t you doing more with your life?”

It’s a never-ending trap, this idea that we should always be doing something more – that who we are and what we do is somehow never enough. The size of this trap expands exponentially once you’ve been seriously ill, the product of the idea that contemplating death imbues a life with greater meaning and therefore greater action. This trap can be as psychologically damaging as the illness itself because of the guilt attached: “I’ve survived, so surely I’m supposed to solve world hunger?”

And that’s why I’m glad to see a change in focus in the ads now broadcast by a nearby cancer treatment center. Finally, here’s an ad that dismantles the trap, that reflects the reality of most of us who survive treatment. We mow the lawn, we make toast, we sort the laundry. I don’t like the implication in this ad that cancer is now an everyday occurrence – a speed bump on the way to the grocery —  and I chafe at ads that pit a center’s survival rates in a marketing competition against others. But I am glad to see the expectations made realistic. Life after cancer is pretty much as it is beforehand — full of ordinary moments.

Must See TV

This short entry is to encourage those of you who are interested to watch the upcoming PBS special on cancer this week (March 30-April 1 — check your local listings for times). The 3-day, 6-hour special is produced by Ken Burns (that same Ken Burns who has documented the Civil War, baseball, and jazz) and is based on the Pulitzer-prize winning book (in 2010) The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, M.D.  You can see a trailer and read a summary of the project on Burns’ website.

Given Burns’ previous work on the Civil War, it is fitting that he would take on the topic of cancer.  Although Richard Nixon initiated the “War on Cancer” in 1971, far too many of us know that war has not been won.

I purchased a copy of Mukherjee’s book about a year ago, but decided that I would postpone reading it, for a couple of reasons.  It’s a big book — approaching 500 pages — and includes descriptions of the science and research involved with this disease, from the earliest records of its appearance in ancient Egypt to the present day. In other words, it’s not light reading.

But it is well worth reading for a better understanding of what the disease is, why it has been so hard to eradicate, and why, unfortunately, we may never be able to do so. The more we know about cancer, the more there is to know.  And although some cancers are now curable, many are not, largely because each instance of cancer is a unique illness in a unique host.

Even if you haven’t been affected by cancer, the book is worth reading for a larger understanding of a disease that is projected by the World Health Organization to increase drastically in coming years. If you’re not currently affected by cancer in some way, there’s a good chance that you eventually will be.  And though cancer once used to be considered a disease of aging, greater and greater numbers of younger people are affected by it.

The other reason I held off reading the book was my own lingering fear of the disease. To read about a topic does not mean that you will be affected by it, but too much of our talk about cancer is still fraught with fear and superstition. I had to get past that magical 5-year mark of survival before I could set aside enough of the fear to read.

If you’re not inclined to read the book, but are interested in the topic, take the shortcut.  Watch the film.

Five years on: What does survival mean?

December 31, 2014, was not just the last day of last year. For me, it was a significant point in my cancer journey – that landmark day that marks 5 years since the end of chemotherapy, the point at which my oncologist started the survivorship clock.

Those 5 years have brought me from a place of terror to one, I hope, of realistic adjustment to the idea that I won’t live forever and that, regardless of appearances, the only real control I have over my life is within my small realm of influence – what I choose to do or not do. I still think about having had cancer every day, sometimes throughout the day, but these thoughts echo from the back of my mind; they rarely take a position in the front.

I still occasionally wonder what I did to bring on the disease, though a recent study suggests what I’ve ultimately come to believe — that in many cases, cancer develops simply as a matter of “bad luck.” Still, although I’ve changed habits that might have led to my developing cancer, I can be prone to that same panic I felt at my initial diagnosis when some new pain shows up.

Why do the cancer gurus set the critical point to determine survival at 5 years and not some other time? After all, I know a few people who were given a clean bill of health at the 5-year mark, but later were taken from us by a recurrence of the very cancer they thought had been conquered.

Here’s what the Mayo Clinic has to say about those 5-year survival statistics, which clarifies the factors influencing survival about as much as they can be. If you want even more details, especially about those long tails in the survival curves, take a look here. And as noted in this chain of posts, lots of factors influence the choice of a 5-year time point for analyzing survival.

Whatever the reason, it’s a date to acknowledge. In my own case of triple negative breast cancer, the more critical time point seems to be 2 to 3 years after diagnosis when (statistically speaking) the cancer is more likely to recur. Although I passed that mark a while ago, the 5-year point is equally important. Besides being the cut-off for the data, this is the point when oncologists tend to turn the care of cancer patients back to their primary care doctor. So the 5-year time point also marks the end of a long-term relationship with the doctor who served as a guide and security blanket during a harrowing time of life.

Besides the legion of thoughts about survival, my diagnosis of cancer left me with the feeling that I should be doing greater things with my life — establishing a non-profit foundation, for instance, or helping to solve world hunger. But here I am, going about my days much as I did before – getting the kids to and from school, teaching writing classes, walking the dog (sometimes).

Outwardly, my life looks very much like it did before my diagnosis, and even my hair has returned to its normal state (albeit with a few more gray hairs). Inwardly, the course of my thoughts is very different. I worry more about possible health risks for my family, yes, but I am also better at recognizing the value of my work, my relationships, and even the boring minutes of the day.

In his book Man’s Search for Meaning, Viktor Frankl notes that “What matters, therefore, is not the meaning of life in general but rather the specific meaning of a person’s life at a given moment . . . Man does not simply exist but always decides what his existence will be, what he will become in the next moment.” In other words, I can decide that, at this moment, what I’m doing has meaning simply because I have decided that it is meaningful. I may not be in a position to solve world hunger, but I can do what I can where I am.

Let the Eye Rolling Begin

skirt2Here 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.



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.


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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The Educated Patient

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Counting the Years and a New Blog

Four years and about a couple of months — 1508 days in all. That’s how long it’s been since I finished chemotherapy treatment for triple-negative breast cancer. At this point — fingers (and toes) crossed — everything looks good for me health-wise, and I am almost able to think that my experience is really, truly part of my past. That it might be OK to think that I am OK (though of course there are never any guarantees).

I watch the news reports about cancer from a different perspective now, as part of the larger picture of health and health care in the U.S. and around the globe. The recent bad (but not surprising) news from the World Health Organization is that the incidence of cancer will continue to increase, more rapidly especially in developing countries in part from infections and in part from the adopting of more affluent lifestyles. The good news from India, where one fifth of new breast cancer cases occur each year, is that treatment for people with HER-2 positive breast cancer will become more affordable. The now-regular reports about research for triple-negative breast cancer are heartening. And an article sent today by a friend describes the humane-ness of cancer treatment in France.

I was very fortunate in my own cancer journey to have good insurance coverage, and good medical care at a center that treated patients well. But much has shifted in American health care in just these 4 years. For example, in the constant efforts for hospitals to secure their income streams in the face of legislative changes, cancer treatment has become a marketing chip, with even renowned centers vying for patients by publishing their survival rates. These changes prompt me to think about what constitutes not just health care but good health care, and how likely it is for the average patient to get that good care despite the smoke and mirrors that dominate the discussions.

Patients and physicians are at the very center of the debate of about healthcare reform, but unfortunately, that reform has been hijacked by government politics and corporate interests. As is clear from the healthcare exchanges, like so many other areas of American life, health care is fast becoming a do-it-yourself proposition. So it’s increasingly up to us as patients, as patients’ families, and as healthcare providers to work to keep medical care in the hands of those at its core — the patients and the care providers.

With this in mind, I am starting a new blog, The Educated Patient, as a forum for discussion of the many influences at work in health care and its reform. I hope it helps patients understand what goes on behind the scenes of their care and helps both patients and providers secure the connection between them.

I will continue writing for The Popsicle Report as before. But please join me in enlarging the discussion at The Educated Patient.



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