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.

***

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

Firefly

The Educated Patient

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.

 

 

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.

 

May I Help You?

May I help you?

It’s a question we often hear – and perhaps recite – without a second thought, especially at this time of year when we try to focus on those in need. After all, what could be bad about offering help?

But oh, what a loaded question it can be. As innocuous as it seems, help is, after all, a four-letter word.

Consider the Beatles, for whom the word was a request. Or the novel, The Help, by Kathryn Stockett, in which the word is a derogatory euphemism for people.

I never thought much about what constitutes help until my cancer diagnosis. And then I thought about it a lot, because people asked that question. And so I had to figure out if I needed help, and what that help might look like.

I can’t speak for others wrestling with a similar need for help – whether it’s because of a serious illness or even a joyous event like the birth of a child. And that’s the first thing to remember about help: it is a totally individual definition and its definition is as broad and varied as the people who ask for or offer it.

As I wrestled with the changes my diagnosis brought, here’s what I found most helpful:

  • The phone call from my internist the evening after she gave me the biopsy results. She had pushed hard to get quick results (because making a patient wait 2 weeks for a confirmed diagnosis is just cruel), and was checking to see how I was doing. Her voice that night was a lifeline in the stormy sea I’d just been thrown into.
  • The guidance of the surgeon and oncologist, who led my spouse and me through the steps to decide on treatment and paced that decision so we had time to figure out the right path. They explained not just the factual medical information (most critically that breast tumors can show up almost overnight between mammograms, so I could quit feeling guilty about missing one), but also the emotional and psychological impact on both of us.
  • My spouse, who investigated the medical information, checking with colleagues for second and even third opinions. Although I try to educate myself and be self-sufficient, the brain fog created by the diagnosis kept me from being able to process what I needed to know to make good decisions. For those facing trouble, it is essential to have such support on the path, someone who can keep you moving through the necessary steps, who can check and double-check details, even down to reading dosages on the bag of chemo drugs when it’s hung at your side in the infusion center.
  • The nurses in the infusion center, whose demeanor helped keep me on an even keel.  They know the seriousness of such a diagnosis, and some wonderful tricks to alleviate side effects, but they don’t reflect sadness or despair when working among the patients. In fact, they regularly reinforced the idea that the situation was manageable.
  • Capable and reliable household help, whether a sister, a friend, or even a hired college student. The critical point is that this help must be independent enough to manage the various duties – laundry, driving kids to events, even cleaning out roof gutters – without constant direction or oversight, but not so imposing as to make you feel like you’ve been sidelined from your own life. It is difficult to find that balance, but SO helpful when it’s there. And that includes those who volunteer to bring in food.
  • The cards and notes from friends and relatives. Hokey as it may seem for the ones who send them, they are the tangible sign that I am loved and supported. I still keep my basket of cards on a table where I can see them as a reminder of this network of support. And the chains of 1000 colorful origami cranes have an honored place on the walls of our home.
  • Conversations with others further down the road of the cancer journey, for they knew what was possible and served as beacons of hope. The yoga gang in particular continues to be a network of support, but I also recall the encounters with anonymous people I met randomly while out on errands, people who recognized the telltale headscarf and compassionately spoke to me.
  • The opportunity to continue to be as productive as I could in my professional life. Though I decreased my workload, my supervisor, who had wrestled with cancer himself, encouraged me to continue working at a level that would keep me engaged so that I was still a person rather than a diagnosis.

And here’s what was NOT helpful:

  • Hearing cancer referred to as “the big C,” which only perpetuates the fear that surrounds the diagnosis. Cancer is not Voldemort (He-Who-Must-Not-Be-Named). Saying the word does not bring on the disease or make it worse.
  • Being spoken to in a pathetic tone of voice (especially with the head cocked at a sympathetic angle). Concern is acceptable, compassion essential. Pity, however, has no place in the armamentarium of help.
  • Being told stories about relatives or friends who had a dire prognosis or died of cancer. Or, on the other hand, being told superficially, “Oh, you’ll be fine!” Cancer is the word used for a wide range of illnesses related to cell dysfunction, with an equally wide range of symptoms and prognoses, and no one ever knows how the story will turn out. It’s essential to help the person maintain her spirits and energy, but neither unrealistic hope nor descriptions of worst-case scenarios is helpful.

A tangent to those stories is telling the person how YOU are feeling about the situation. Someone who is blindsided by a life-altering event does not have any spare energy to help you figure out how you feel about the illness. A good guideline to prevent such a scenario is to follow the Ring Theory of kvetching, described by Susan Silk and Barry Goldman in their article in the Los Angeles Times. As they put it, “The first rule is comfort in, dump out.”

What is least helpful is any sort of help that is about your need to be helpful, rather than what the person really needs. This is not the time to prove to yourself or anyone else that you’re a good helper. If you’re someone who can offer help, be sure it’s the kind of help the person really needs, which is not necessarily the kind of help you might want to give. Help is a gift  — and gift, too, is a four-letter word. Like any gift, it should be about the person receiving it, not the one giving it.

If you’re someone who really needs to help or wants to organize help for a friend, there are several websites that can help you help someone else. Lotsa Helping Hands is just one of them.

And now, to lighten the mood, the musical closing.  Sing along if you like.

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.

******************************************************************************************************************************************

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.

The News of the Day is Not All Bad

 

 

October 1 — and the news of the day is not encouraging:

The U.S. government is shut down because our Congress can’t seem to get along.

The websites to sign up for the new healthcare exchanges have crashed.

And our celebrities are so lazy, they can’t walk at a tourist attraction.

But, in honor of the pink month, there is some encouraging news:

  • Deaths from breast cancer in the U.S. in 1991:  43,583
  • Estimated deaths from breast cancer in the U.S. in 2013: 40,030

It may not look like much of a difference, but it’s a big deal for those 3553 people who remain alive.  Let’s celebrate what we can.

And if you’re tired of the today’s bad news and need a good laugh, check out the new story at my other blog.

Test Anxiety: The August Installment

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

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

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

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

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

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

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

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

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

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

This year.

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

Follow

Get every new post delivered to your Inbox.

Join 200 other followers