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.

 

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

Firefly

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

 

 

Guest Post: Sloppy Reporting Affects Too Much Cancer Writing

This month, I am re-posting an excellent blog post by Patricia Prijatel, the E.T. Meredith Distinguished Professor of Journalism Emeritus at Drake University in Des Moines, Iowa.  She is the author of Surviving Triple-Negative Breast Cancer, an investigation into the causes and treatments of triple-negative breast cancer (TNBC), the type of breast cancer that we both had. The book was published in 2012 and can be found here.

This article was originally posted on Patricia’s blog, Positives About Negative, on September 8, 2013. In it, she describes how it is that media reporters misinform the public about triple-negative breast cancer and the effects of that misinformation on the public’s understanding of the disease. Although she focuses specifically on TNBC, the situation she describes is rampant in the media when it comes to health and other topics, and she calls on reporters to be precise in their reporting, to represent their topic accurately, and take responsibility for their words and the effect those words have on the audience.

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Sloppy Reporting Affects Too Much Cancer Writing

By Patricia Prijatel

Reporters: Precision is especially important in health writing.  

Patients: Read carefully and learn to spot misinformation and dangerous generalizations.

I have been a journalist for 46 years, 30 of that teaching at some level. My son is a journalist, as are most of my close friends. Yet one of my biggest frustrations since my cancer diagnosis is with my own profession.

Most journalists have more of a job than they can handle right now, so I offer a few rules for them about breast cancer reporting, skewed toward information about triple-negative breast cancer (TNBC), which gets especially distorted in the media. What tripped my trigger today was a story in KGW.com, a station in Portland, Oregon, but it has been an issue with The New York Times, medical journals, blogs, and just about every form of medical or health information.

1. No one type of breast cancer is THE most aggressive. Not TNBC, not Her-2 positive, not inflammatory, all of which are repeatedly given that description in outlets large and small.

Which is THE most aggressive? Plenty of all types. Even early-stage hormone-positive breast cancer can be aggressive with the wrong mix of genetics (the BRCA genetic mutation and others that researchers are still uncovering), family history, and numerous environmental, health, and lifestyle issues (insulin resistance, weight, alcohol abuse, and so on.)

Some forms of TNBC are more lethal than some forms of hormone-positive, and less lethal than other forms. And so it is with all types and subtypes.

2.  There are successful treatments for most forms of TNBC. Yet journalists easily say things such as, in the KGW.com piece, “Women with triple negative breast cancer don’t usually respond to most traditional therapies.” I honestly appreciate that qualifier, “usually.” Neverthless, the statement is inaccurate. It is true that TNBC tumors are not responsive to estrogen-altering drugs such as tamoxifen and Arimidex because the disease is not fueled by estrogen.

But TNBC responds well to typical chemotherapy—better than other forms of cancer respond, in fact. So women with TNBC usually get their drugs in the form of chemo, either before or right after surgery, rather than in five-year doses, as is the case with patients with estrogen-positive disease.

Treatment for metastatic TNBC—stage IV—remains difficult, and it is true that many of those patients do not respond to current therapies. But fewer than 10 percent of patients with TNBC have stage IV, which means that 90 percent may respond well to treatment.

So the helpful qualifier in that statement would be “Metastatic TNBC does not usually respond well to most traditional therapies.”

3. Readers internalize your words. Last week I talked to a woman who had been given an excellent prognosis from her doctor, yet still thought her outlook was grim because she read a news release saying TNBC was lethal. Communications research demonstrates this phenomenon—we’re more likely to consider media reality as the real deal instead of our own lives. Everybody lives in cool apartments and houses on TV, so you believe that to be true in real life, despite the fact that most of your friends have standard-issue digs with furnishings from WalMart. Same way with health issues. Ominous news in the media feels more accurate than your doc’s more measured approach.

4. The generalizations you use can loop around to negatively affect your readers’ and listeners’ health. I recently talked to a highly educated woman with a medical background who thought that it did not matter that her TNBC was stage 1. “Stage doesn’t matter with this disease, does it?” she asked. She was ready to give up. Of course stage matters. Stage 1 TNBC is much less aggressive than stage 4 of anything else. The great majority of women with stage 1 TNBC survive—as many as 90 percent in some studies.

Still, because she thought TNBC was automatically aggressive, she was giving up, and few battles in health or otherwise are won by giving up.

So do your research and don’t lump early stage with late stage disease. The research reported on by KGW.com was on the drug PLX2297, which may be effective against TNBC. I cannot find the research the reporter alludes to, but I did find a clinical trial for PLX3397 in connection with Eribulin for metastatic TNBC.  Metastatic is late stage. Metastatic is a much different disease from non-metastatic. Know the difference and include it in your story. It actually only takes a word.

5. Remember your vocabulary. Lethal means deadly. So if you tell me my disease is lethal, you are telling me it will kill me. Yet most women with breast cancer, including TNBC, live happy lives long after diagnosis. I have talked to a great many of them. They compete in triathlons, have babies, tend their grandchildren, get remarried, buy cottages by the ocean.

6. Get your stats straight or don’t use them. Just as all breast cancers are different, so are their prognoses. Saying that TNBC patients have “another five to eight years to live,” as KGW.com reported, is outrageous. There is no research to back this up. Most recurrences of TNBC come in the first three years, but a host of studies show that the majority of women with the disease make that marker easily and live disease-free for decades. I have interviewed countless women who are 20 years past this diagnosis. And, sadly, I have lost friends before the three-year mark. There is no one prognosis, but the reality is that most women survive beyond “five to eight” years. Don’t tell readers they’ll likely be dead in five years. Really, I have to say that?

7.  Never settle for a one-source story. This is pretty basic and is true of all journalism, but especially for health. That source could be wrong, inarticulate, promoting an agenda, or speaking in medical shorthand that the writer’s colleagues might comprehend but which may confuse or frighten their patients. Researchers naturally want to show the importance of their findings and, in so doing, could mischaracterize the seriousness of a disease. This information is too important to let one individual set the tone. At least link to organizations with a broader perspective. Numerous sites exist for accurate breast cancer information, including breastcancer.org, the Triple-Negative Breast Cancer Foundation, Living Beyond Breast Cancer, and of course, this blog.

Read more about TNBC in the book, Surviving Triple-Negative Breast Cancer.

Melissa versus Angelina: What’s Wrong With This Picture?



When I first heard about Angelina Jolie’s breast surgery (how could you not hear about it?  The news seeped in everywhere, even if you never read a newspaper or watch TV), I thought, “Really?  An op-ed in the New York Times? National and international headlines??  Really?!”

Never mind the fact that, when discussing the news, the announcer on the Yahoo channel mispronounced two rather important terms: preventive (not preventative) and mastectomy (not massectomy).

Never mind the fact that it seemed the New York Times has skewed priorities for its opinion pages. (I wonder what our soldiers in Afghanistan had to say about their lives on that particular day).

And never mind that every time people look at Ms. Jolie now, they will see not just the luscious lips, the dark eyes, and her skeletal figure. Even more so than before, their eyes will move to her breasts, with judgment, and they will whisper to their friends, “You know they’re not real.”  (Stay tuned to see if Jolie’s career takes a hit as Hollywood may now see her as “damaged goods.”)

The ripples from Jolie’s announcement continue to work their way toward shore.

Some say Jolie was brave to put herself out there and describe rather intimate details of her life. Her decision is one grounded in the anguish that arises when a woman learns she has one of the genetic mutations (BRCA 1 and BRCA 2) that can lead to breast and ovarian cancer. But this is a decision thousands of unknown women have had to make in their own quiet, desperate ways, without the advantages (or pressures) of the spotlight.

The myriad comments by readers and viewers worldwide show that Jolie’s choice resonates with many people, and that’s good. But it does raise the repeated problem of a celebrity becoming the intact, smiling, healthy-looking poster child for a particular illness:

  • Think Christopher Reeve recovering from his spinal cord injury
  • Think Michael J. Fox wrestling with a body ravaged by Parkinson’s disease
  • Think Robin Roberts after her recent bone marrow transplant

Their integrity is remarkable. But so is that of the average person whose struggle with illness is never so much as commented on in the local newspaper.  Even Christina Applegate, an actress who went through a similar procedure several years ago, didn’t rate above-the-fold headlines in the national newspapers.

Maybe the celebrities give us hope. Maybe they’re also guilty of putting a pretty face on conditions that are devastating for most of us on a daily basis, making it all seem so easy, so manageable.

The latest opinion – once again reported in headlines — comes from Melissa Etheridge, who is no stranger to the topic of breast cancer, having been called equally brave for appearing bald onstage at the Grammy awards in 2005 while undergoing treatment for breast cancer. I don’t agree with much of what she says in her confusing response to Jolie’s situation (which was even more confusing once she tried to clarify her comments), but I do agree with her opinion that Jolie is not brave.

As has been reported widely, Jolie has a strong family history of breast cancer and carries a defective gene that could lead her down the same path as her mother and her aunt. Her choice to remove and rebuild her breasts decreases the likelihood of her developing breast cancer by as much as 85% or more. To seal the deal of prevention, she will also need to undergo an oophorectomy to remove her ovaries.

Jolie has six children who count on her presence in their lives. And though science still has a long way to go on the topic, it has at least presented people like Jolie with some options before cancer develops. What she did was not the brave thing. It is not “brave” to do the thing that can save your life. It is simply the thing you must do.

But Jolie’s is not the experience of most women who face breast cancer. Genetic mutations account for only about 10% of breast cancer cases. The other 90% of us have no warning, no predictors, no scientific data to arm us for the enemy when it comes. We’re simply blindsided and left to figure out what to do in response.

I’ve been waiting for the press to report what I anticipated would happen after Jolie’s announcement:  the spike in fear from women everywhere as we are all once again terrified by the threat of this disease, and the spike in demand for a genetic test that is extremely expensive and not covered by insurance, unless you can demonstrate a medical necessity for the test. (Fortunately, the good news from the Supreme Court recently that Myriad Genetics cannot patent the breast cancer genes should force that company to relinquish their monopoly, and their huge profits, on the genetic test.)

Finally, an article by Kevin O’Reilly in the American Medical News, a newsletter published weekly by the American Medical Association brought these ripples to light:

  • The confusion the story created for women everywhere, who fear they will be one of the more than 200,000 women diagnosed with breast cancer every year
  • The flood of phone calls to doctor’s offices by these frightened women
  • The onerous task of already overburdened physicians and nurses trying to separate facts from the fears for the patients who call.

The article summarizes the point well:  “[S]ome medical experts are voicing the concern that the Oscar-winning actress’s story could lead to inappropriate use of genetic testing and prompt women without hereditary cancer risk to demand prophylactic contralateral mastectomy when less invasive treatment options are as available.”

Jolie has been, and will remain, in the spotlight for a long time to come. Maybe she can now turn that light not on “the choice,” not on “the cure” but on the real problems:

  • Our continued reliance on mammography as the “gold standard” tool, when it clearly fails many women, either by missing the cancer or implying it’s there when it’s not. We need something better.
  • Our continued heavy emphasis on finding “the cure” to the exclusion of finding the causes. A cure is necessary, but the greater miracle would be finding – and stopping – the causes, including the causes of genetic mutations.

Jolie’s article in the Times, instead of focusing on the real problems women (as part of ALL humanity) face, focuses on breasts, and not the breasts of the average woman. Jolie herself distracts attention from these real problems by talking about “empowerment.” The comments supporting Jolie show that we are much too willing as a society to accept that cutting off breasts to prevent cancer is acceptable, even normal, which contributes to the idea of breast cancer as just another rite of passage for women, like marriage or childbirth.

If you want to really empower women, put more of them in the House and Senate, put more on boards of the major corporations, those very corporations guilty of the pollution that harms all of us. Statistics show that women tend to be very concerned about health and safety issues, especially those that affect their families. TRUE power (not the passive type that only reacts to an event) is the ability to make decisions to stop harming our citizens for profit, which our government and businesses should be doing. Telling women to get mammograms (and haggling over who should, who shouldn’t, and when) isn’t going to get it done. Having people like Jolie “come out” about her actions also isn’t going to get it done.

Angelina – you have the spotlight. Be the actress – act, and turn that spotlight where it should be.

And Melissa – keep those great tunes coming.

The Latest Developments

A couple days ago, I went in for the next in my series of 3-month check-ups.  A few odd numbers still show up for the blood cells, but everything else looks OK.  It’s been 15 months since the end of chemotherapy, just over a year since my last dose of radiation.  So I “graduate” to check-ups every 6 months now, and return to the annual schedule for mammograms/MRI. (Frankly, I’d prefer to skip the mammogram, but the doc likes to see one.)

So why the switch to a new schedule? After all, cancer can come back any time it pleases.

The logic goes something like this:  If it’s a supremely aggressive breast cancer, it will very likely come back during the first year after treatment.  After that first year, the chance of recurrence drops a bit and, in the case of triple negative disease, the chance of recurrence drops precipitously after the third year.  But as is typical of the confusion in the media when it comes to health information, I also read somewhere that the peak of recurrence for triple negative tumors is in the second and third years, so I don’t know what to believe.  This is one of those moments when I just turn myself over to the recommendations of the folks who know more than I do.  If the doc says don’t come back for 6 months, I’m not going to argue.

Listed below are bits of news I’ve collected about recent developments related to cancer and cancer patients in general:

  • Lest we think too much of our American advances in medicine, to the exclusion of developments in other places, here is an article describing the use of something called the Mobetron, a type of linear accelerator, in Japan.  This unit is used for intraoperative electron-beam radiation therapy (radiation delivered *during* surgery) and has been employed for patients with pancreatic cancer since 2006 and breast cancer since 2007. Its use in Japan was inspired by results from studies in Italy. This approach makes it possible to apply a single dose of radiation directly to the cancer site during surgery, allowing the patient to avoid the 6 weeks of standard postoperative treatment. Besides the obvious advantage of shortening treatment, such an approach means the surgeon can directly see the field to be radiated and there is less damage to surrounding tissues. This technique has crossed the ocean but is not widely available yet in the U.S.  If you’re interested, you can see the unit in operation (and the shameless plug for the hospital it’s at) in this video.
  • A couple of other recent studies serve well to dispel some of what are in fact myths of cancer treatment.  The first group of researchers found that depression is no more prevalent in cancer patients than in the general population of primary care patients.  The second set of investigators discovered that it may not be necessary to remove a large number of lymph nodes to assess the spread of breast cancer  – a procedure called lymphectomy that can sometimes lead to problems with lymphedema, a painful swelling of the arm.  They found that women who have only a few nodes removed for analysis have 5-year survival rates almost identical to those who have more nodes removed. I rather wish this study had come out a little sooner, but it might not have changed the picture for me after all. Extensive removal of nodes may still be necessary for those who have Stage 3 cancer. The piece of this puzzle yet to be explained is how a doctor then determines the stage of disease, since the number of lymph nodes involved is often what distinguishes, say, Stage 2 from Stage 3.  I’m sure there’s more news to come on this front.
  • A friend sent me a notice about ways to prevent thyroid cancer, the rates of which have been steadily increasing over the years, particularly in women. Some researchers suspect that this increase could be a consequence of the increased use of dental x-rays and mammograms.  Few of us know that the apron the dentist puts on you for x-rays has a flap that goes up around your neck to protect the thyroid.  There is also something called a “thyroid guard” for use during mammograms, but most technicians don’t use them unless you ask.  You can find more information about these methods of protection at one of my favorite websites, the one that investigates Internet myths and legends – Snopes.com.

These Genes Don’t Fit

A section of DNA; the sequence of the plate-li...

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Last month, I decided to take the plunge and drive north to Seattle to speak with a genetic counselor to determine whether there’s any likelihood that I developed breast cancer as a result of a malfunction of my genes.

The current numbers from the experts say that only 5% to 10% of women who develop breast cancer have a family history that can be attributed to a genetic defect passed down through relatives (either male or female). So, despite what the various media might lead you to think, most women who develop breast cancer do not have a genetic defect, at least not one that we can yet identify.

Still, some of the recent research about triple-negative cancer raises the question of a greater likelihood of a genetic defect (most commonly a mutation of BRCA1), and so I again had to consider whether to sign up for genetic testing.  Both my oncologist and the naturopath said it was unlikely and they didn’t see the need to progress to testing, but then came a report from the New England Journal of Medicine, which charted a higher rate of genetic defects among those of us with triple-negative or basal types of breast cancer. Since I do have a son and a daughter, each of whom might be affected if I have such a mutation, I had to lay the issue to rest in my own mind.  (And as a couple of people put it to me, “The mutation has to start somewhere!”)

So I asked the oncologist to refer me to the counselor at the University of Washington, home of the highly regarded Fred Hutchinson Cancer Center, one of the foremost cancer research centers in the country.

And what I learned, once again, is that life is rarely a matter of a simple yes or no. Yes, genetic defects can play a role, but that role is much more complex that simply saying a defect exists or doesn’t.  Science is amazing in what it has uncovered about human life, but when it comes to issues like genetics, there are more unknowns than facts. Even my astute daughter figured out that, should I have a genetic mutation, her chance of developing breast cancer is only 50-50.  (And who says they don’t teach substance in schools these days?  She studied the basics of Mendelian genetics and chemotherapy in science last year.)

As I mentioned in earlier posts, I have the great benefit of coming from a large family – 8 aunts and uncles, 35 first cousins – and I know much of the history of the illnesses passed down among these relatives. With the exception of my maternal grandmother, there are absolutely no other cases of breast cancer in that extended family.  But that fact is not enough on its own to rule out a hereditary cause because some syndromes leading to breast cancer are associated, for example, with sarcomas and leukemia, or digestive and thyroid tumors. As this information from the American Cancer Society shows, the various risk factors and genetic influences — BRCA 1 and 2, ATM, p53, CHEK2, PTEN — are much too complex to pin down in any single case.

After carefully recording the details of medical problems in my extended family, the genetic counselor I spoke with determined that the chance of my having a genetic defect is only about 5%. That number doesn’t explain why I got the disease, but it goes a long way toward making me feel more optimistic for my children’s futures.

This is a set of genes I’m quite happy don’t fit.

Myth Busting, Part 1

A couple weeks ago, I went in for another trip to another doctor.  This visit was routine –the “review of systems” recommended at certain age milestones.

I hadn’t seen my primary care doc since the day she gave me the breast cancer diagnosis in June of 2009. Except for a few ongoing aches (the jaw, the elbow), I seem to be in pretty good shape. I got tetanus and whooping cough boosters, gave up two vials of blood for tests (sedimentation rate, thyroid hormone), and was sailing merrily out the door when I realized I’d forgotten to ask when I’m due for the next mammogram.  My last one was in July, 8 months ago, but some guidelines recommend every 6 months for a couple of years after surgery.

So back I went to the desk clerk, asking her to query the doc.

“I don’t know whether we’re bothering with the mammogram anymore,” I said, “since they turned out to be pretty useless for me.” Before I’d even had a chance to finish my comment, the desk clerk rolled her eyes and nodded.

“Useless, that’s right,” she said definitively.

Obviously, she had no more faith in them than I do. I replied, “Yeah, I just wish the media would get that message across to the public, instead of the myth that mammograms will save you.”

She nodded again and said, “Yeah, that would be great.”

That message should be even louder with the report last week that mammograms are even more useless for those of us who’ve had breast cancer.

******

Also a few weeks ago, in my e-mail, came a link to an article about a woman in Chicago who returned to work after her treatment for triple negative breast cancer. Appearing in the article is a comment I’ve seen too often now — that this form of cancer is “aggressive” and outcomes are often “poor.”  These comments have been repeated almost as if they were scripture.

As with information about any given disease, the truth of the matter is in how you slice the data. Clearly, the woman in Chicago is doing well, as am I.  Of course our present circumstances are no guarantee of continued good health, but they do work to dispel the idea that triple negative disease is always deadly. A booklet published by the Triple Negative Breast Cancer Foundation, Guide to Understanding Triple-Negative Breast Cancer,clarifies a number of the misunderstandings about this particular form of breast cancer:

  • About 10 to 20 percent of breast cancers are triple-negative.
  • Triple-negative breast cancers do not respond to “targeted therapy” such as Herceptin and Tamoxifen. (HER-2 negative tumors were actually considered the most dangerous type of breast cancer until Herceptin came along.)
  • Although BRCA1 mutations increase the risk of developing triple-negative disease, not all breast cancers from BRCA mutations are triple-negative. The BRCA2 mutation is actually more likely to appear in tumors that are estrogen receptor-positive.
  • Even if you have no family history of breast cancer, you could in fact be the first person in your family known to develop breast cancer because of a BRCA mutation.
  • Pre-menopausal women and women in black and Latina groups have higher rates of triple negative cancer than other groups of women.
  • Chemotherapy works better against triple-negative cancers than it does against hormone positive breast cancers.
  • Although triple-negative breast cancer can be aggressive, it does not always metastasize. The risk of recurrence is strongest in the first 3 years after diagnosis (some studies say 5 years, some as many as 8-10 years).  Past this time, the risk of recurrence actually falls below that of other types of breast cancer.

And most importantly, most women with triple-negative breast cancer never have a recurrence or a new cancer.

So, like the myth about mammograms, the message about triple negative breast cancer needs to change.