5 things to think about before you pink

October is upon us, and the pink reminders that this is Breast Cancer Awareness Month seem more prolific than the autumn leaves scattering from the trees.

Here’s another reminder: Consumer beware. Just because a product is advertised with the familiar pink ribbon doesn’t mean your purchase is making a meaningful contribution on behalf of breast cancer research or charity.

From the Think Before You Pink website, here are five things to look for beyond the pink hype:

1. Will your purchase of a product actually result in a donation to the cause? The use of the pink ribbon symbol is unregulated. Some companies use it on their products to show support but their contributions aren’t tied to purchases of pink-ribbon products. In other cases, the consumer has to do something further, e.g. sending in labels or boxtops, before the donation is realized. Sometimes the company also caps its donations, yet continues to sell the product to consumers who are unaware that their purchases are no longer being used to support the cause.

2. Is the company transparent about how much it donates from its pink-ribbon proceeds?

3. Who gets the money? Pledges that your purchase will help support “programs” or “services” for women with breast cancer are vague. Statements that your purchase will help promote “awareness” of breast cancer are vaguer yet. Buyers who sincerely want to make a difference should know where their money is going and whether it’s going to a credible organization.

4. What will the money be used for? Will it be spent on services that directly benefit women with breast cancer? Will it make a dent in screening, treatment or prevention? Or is mostly being spent on administrative costs and marketing?

5. Are the company’s pink-ribbon products and promotions in line with your personal values? For instance, are you OK with pink “limited edition” bags of potato chips? How do you feel about Booze for Boobs pub crawls, an event that sprung up in some communities in the U.S. a couple of years ago? (The organizers seem to be unaware that excess alcohol consumption has been linked to an increased risk of breast cancer.) How do you feel about supporting the cause by buying pink-ribbon cosmetics that may contain potentially harmful chemicals?

Think Before You Pink, a project of Breast Cancer Action, offers this final advice: If it looks like your money will do little, if anything, to support breast cancer programs, or if the company isn’t transparent, reconsider and make a direct donation instead to the charity of your choice.

5 health messages from Angelina Jolie

It’s been more than two weeks since actress Angelina Jolie revealed the bombshell story of her preventive double mastectomy, and I’m still trying to wrap my head around the implications.

This was a news item that was hard to miss, given the reaction and commentary it ignited. For those who’ve been out of the loop, here’s the story in a nutshell: Jolie went public with a New York Times essay on May 14, telling her story of recently undergoing a double mastectomy to lower her risk of developing breast cancer. Her mother died at age 56 of ovarian cancer and Jolie herself has the BRCA1 gene, heightening her chances of someday being diagnosed with breast and/or ovarian cancer.

“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could,” Jolie wrote.

She explained that although the decision wasn’t easy, “I feel empowered that I made a strong choice that in no way diminishes my femininity.”

It’s a compelling personal story but the ensuing reactions made it clear there was much more to it than one woman’s choice. After a lot of reading, I saw these main issues that kept rising to the surface:

1. Genetic testing – helpful or not? Jolie urged women to get tested for the BRCA gene, especially if there’s a family history of breast and/or ovarian cancer. What’s left unsaid is that only about 1 percent of women in the U.S. have the BRCA1 or BRCA2 gene. To be sure, genetic testing could help these women weigh their options, but it may not be useful to the population as a whole. For women who test negative for the gene, it might even create a false sense of security, since the vast majority of breast and ovarian cancers are not tied to any obvious risk factors.

Nor is it enough to simply have access to genetic information; people also need guidance to help them make sense of the information and make decisions based on their own values and tolerance of risk.

2. Risk isn’t always perceived accurately. By undergoing a preventive mastectomy, Jolie was able to lower her risk of breast cancer from 87 percent to under 5 percent. But these numbers seem to mostly reflect the odds ratio, i.e. overall likelihood given a specific set of circumstances. They don’t necessarily indicate actual risk. Moreover, even a drastic measure such as a preventive bilateral mastectomy does not lower the risk to zero, nor does it lower the risk of developing other types of cancer.

3. Be careful of the anecdote. Personal stories resonate with people. Jolie put a human face on the ordeal of learning you have the BRCA gene and pre-emptively having both breasts removed. But this is one person’s story; the experience may be quite different for someone else.

Jolie writes that her surgery and breast reconstruction were complication-free. “The results can be beautiful,” she says. No doubt this is the case for some people but it glosses over the possibility of scarring, infection, repeat surgeries and all the other things that can make these procedures anything but beautiful.

4. Surgery to remove healthy body parts, even when heightened risk is present, is a drastic measure. Maybe this speaks to how Americans have been conditioned to fear breast cancer. Some of this fear may be justified. In spite of massive investment in research, treatment options remain limited for metastatic, or widespread, breast cancer. The fact remains, however, that it’s a very aggressive way to try to prevent disease.

Interestingly, studies going back at least a decade indicate that most women who undergo a preventive mastectomy are happy with their decision and feel less anxious about their risk for cancer. Unfortunately some of the public discussion about Jolie’s story has become muddled over the distinction between preventive mastectomy and mastectomy once cancer is diagnosed. These are two different things that cannot accurately be weighed on the same scale.

5. Individual medical decisions are exactly that – individual choices. I wouldn’t judge Angelina Jolie for her choice. Only she can determine what level of risk she’s willing to live with and what she’s willing to do to reduce that risk. For someone else, the decision might be entirely different.

The crux seems to be whether patients have accurate, realistic information and a good understanding of their personal values and preferences – a principal that applies in countless other health decisions, from whether to take a prescription drug to making end-of-life decisions. Maybe by sharing her story, Jolie has contributed to moving along a complicated conversation that needs to happen.

Men in pink

Amid October’s pink tide of breast cancer awareness, there’s one demographic that’s all too often overlooked: men with breast cancer.

Yes, guys get this disease too.

I was reminded of that fact earlier this week when the Mayo Clinic tweeted a link to a story that appeared a few years ago in the Sharing Mayo Clinic publication. It’s the story of Craig McMillan, a 59-year-old insurance agent from Florida who was diagnosed with breast cancer in 2004 and underwent a double mastectomy followed by chemotherapy and radiation.

Was it a shock? Absolutely. “Like most men, I thought it was a women’s disease, so I was in denial and didn’t think it could happen to me,” McMillan told the Mayo magazine.

His wife, Jane, said she had never even heard before of breast cancer among men. “After the diagnosis, we found out that three other men we know have also survived breast cancer,” she said. “I guess this is an issue that men just don’t like to talk about.”

Some facts about male breast cancer:

- It’s rare, which may account for why many people remain unaware of it. About 2,000 new cases are diagnosed in the United States each year, and about 400 men die of male breast cancer. To put it in perspective, men account for about 1 percent of all new breast cancers annually in the U.S.

- The cause remains unknown. Research suggests that acquired or inherited gene mutations may play a role – primarily the BRCA1 and BRCA2 genes, which are thought to be a factor in 5 to 10 percent of breast cancers among women. Men with either one of these genes face a higher lifetime risk of breast cancer but apparently less so than women with one of the BRCA genes.

- As with women, the risk of breast cancer among men tends to increase with age, family history (McMillan’s grandmother and sister both had breast cancer, and both his parents had lung cancer), heavy drinking and estrogen treatment. There also seems to be a link with environmental exposure, such as medical radiation or occupational exposure, although more research is needed on how strong this link might be for male breast cancer.

- Treatment options are the same for men as for women: surgery, radiation, chemotherapy, hormone therapy and some of the newer targeted therapies.

- Breast cancer actually is easier to diagnose in men because they have less breast tissue, making lumps easier to spot while they’re still relatively small. Lack of awareness, coupled with embarrassment, is more likely with men than with women, however, and can lead to delays in diagnosis and treatment. Also, male breast cancer unfortunately doesn’t need to grow very far to spread to nearby tissue or lymph nodes, which means their cancer may be at a more advanced stage by the time it’s diagnosed.

- Men with breast cancer seem to have better survival rates than women – but survival for male breast cancer has been increasing at a slower rate than for female breast cancer.

- Men are not well represented in the research on breast cancer. Much of what we know about male breast cancer stems from studies made up mostly of women who have the disease.

How men fare emotionally when they go through diagnosis and treatment for male breast cancer seems to be similar to anyone else who has cancer. After all, much of this terrain is universal, regardless of gender, age or diagnosis. But it surely must be more complicated, and more isolating, for many men. It’s hard to picture how comfortable they might feel as the lone guy at a mammography center. Are they marginalized by the symbolic pink ribbon – and if so, does this make their experience more difficult than it needs to be?

if ever there was a case to be made for avoiding one-size-fits-all approaches to how we talk about cancer and how we respond to those who have the disease, this would be it.

Do mammograms really save lives?

There’s a common belief that routine mammograms save lives – but do they really?

A provocative article appearing in the latest edition of the Archives of Internal Medicine examines this claim and concludes that the ability of routine screening to prevent women from dying of breast cancer has been overstated.

The authors’ rather startling summary: “Most women with screen-detected breast cancer have not had their life saved by screening. They are instead either diagnosed early (with no effect on their mortality) or overdiagnosed.”

This is not a message most of us are accustomed to hearing. The benefits of routine screening for breast cancer have been drilled into virtually every American woman over the age of 20 or thereabouts, and reinforced with numerous, emotionally powerful stories of individual women whose cancer was detected during a regularly scheduled mammogram and who are alive to tell about it.

The article’s authors used DevCan, a software program developed by the National Cancer Institute for analyzing SEER )Surveillance Epidemiology and End Results) data to estimate women’s 10-year risk of a breast cancer diagnosis and 20-year risk of death. They crunched the numbers in several different ways: with mammography, without mammography, with varying statistical assumptions about risk reduction in breast cancer deaths, and for women at ages 40, 50, 60 and 70.

Their analysis found that among all age groups, fewer than 25 percent of women likely had their lives saved because of a screening mammogram. In many cases, the authors explained, “a woman may have had her breast cancer detected early yet not benefit from early detection because her cancer would have been equally treatable had it presented clinically… Alternatively, a woman may have been overdiagnosed – diagnosed with a cancer not destined to cause symptoms or death.”

There’s a caveat to this analysis. It’s based on a set of statistical assumptions rather than an actual group of women, hence comes with several limitations.

Nevertheless, it challenges the accuracy of one of the most widely held notions about screening and prevention: that women can reduce their risk of dying of breast cancer by having regular mammograms – and, conversely, that women who skip getting a mammogram are somehow irresponsible or are putting themselves at undue risk.

Screening and prevention in fact are not the same thing, a distinction that seems to have become lost in many of the public health messages, particularly when it comes to cancer. Nor does screening necessarily guarantee a good outcome; individual tumor biology seems to be the most critical determinant of whether a cancer will be slow-growing or metastasizing, whether it will respond well to treatment or become treatment-resistant.

It’s only been in the last few years that the public discussion has become more nuanced about the benefits of screening and early detection. For instance, health experts have backed away from routine screening for prostate cancer, citing the unreliability of the PSA test and the risk of overdiagnosis and overtreatment. Two years ago the U.S. Preventive Services Task Force recommended against routine mammograms for women in their 40s, citing the lack of a clear life-saving benefit and calling instead for this to be an individual decision between these women and their doctors.

This is an emotional issue for many people, though, and the authors of the Archives of Internal Medicine acknowledge the difficulty of squaring the science with women’s personal experiences:

Today, more people are likely to know a cancer survivor than ever before. Between 1971 and 2007, the number of cancer survivors in the United States more than doubled, from 1.5% to 4.0% of the population. Breast cancer survivors are particularly common: they now represent approximately 2.5 million, or one-fifth of the current survivor population. 

Earlier diagnosis (either via enhanced awareness or screening) and better treatment are clearly part of the explanation for this large survivor population. But so too is the enthusiasm for screening and the resulting overdiagnosis. And, ironically, this enthusiasm may, in turn, be the product of a large number of survivors. This self-reinforcing cycle (the more detection, the more enthusiasm — the so-called popularity paradox of screening) is driven, in part, by the presumption that every screen-detected breast cancer survivor has had her “life saved” because of screening. Our analyses suggest this is an exaggeration. In fact, a woman with screen-detected cancer is considerably more likely not to have benefited from screening. We believe that this information is important to put cancer survivor stories in their proper context.

Importantly, no one is saying screening is worthless or that we should all stop doing it. By the researchers’ own estimates, mammography does help save lives up to 25 percent of the time. But it seems to be a matter of recognizing that mammograms aren’t the silver bullet we’d like them to be, Dr. Susan Love writes in a column that appeared earlier this month at AOL Healthy Living.

When it comes to screening mammograms, we tend to engage in wishful thinking and ignore the science, she wrote. “We get angry at the experts who tell us studies show that mammography is less beneficial for women in their 40s. We focus on the idea that if only women had regular mammograms every cancer would be found early and cured.”

Rather than argue about screening guidelines, Dr. Love writes, “we need to face the science squarely and focus on prevention, so that we can learn how to avoid cancer in the first place.”

West Central Tribune file photo

Pink passion

 

If it’s October, the color must be pink.

It would be hard to think of a public awareness campaign that has been more successful than the signature pink ribbon of breast cancer. From burly football players to the cartoon artists of the Sunday comics section, everyone is doing the pink thing. The pink ribbon has become one of the most iconic symbols in American culture.

Clearly we’ve come a long way from the era 40 or 50 years ago when breast cancer was rarely spoken of in public and women faced stark choices in their treatment options. But is there such a thing as overdoing the pink message? An increasingly loud chorus of dissent suggests many people are feeling oversaturated, jaded, cynical and resentful.

And the critics certainly have plenty of ammunition. For starters, there’s the blatant commercialism. I’ve learned to get used to the pink foil lids on Yoplait’s yogurt containers, but the fresh mushrooms I saw last week at the store, packaged in a pink carton with a pink-ribbon logo on the label, seemed rather over the top. Does enticing consumers to spend money on pink-themed products actually help promote awareness of breast cancer, or does it mainly line someone’s corporate pockets? How much more awareness do we need, anyway? Does the sale of pinked-up trinkets, T-shirts and other merchandise benefit research? Does it directly support programs and services for screening or treatment for breast cancer? Does it do anything for women who are uninsured or underserved?

Consumers would do well to ask questions before buying into the pink-ribbon marketing, urges Think Before You Pink, a San Francisco-based organization that calls on companies to be more transparent and more accountable in their fund-raising on behalf of breast cancer. In other words, buying pink doesn’t automatically mean your money is well spent.

It’s not just about the hucksterism, though, or the girly feel-good pinkness that threatens to trivialize what is, after all, a serious health issue. The pink tsunami is skewing our perceptions of risk, disease and the populations that are deserving of our attention, writes Mary Elizabeth Williams in an article for Salon magazine titled “The Smug Morality of Breast Cancer Month”:

For over 25 years now, thanks to the efforts of organizations like the Susan G. Komen Foundation  and the Avon Foundation for Women, one of the most pervasive — and deadliest — diseases to strike women has become an important topic for research, detection and public awareness. No doubt all that advocacy has played a part in the sharp decline in breast cancer rates over the past decade, an encouraging sign for all of us who possess breasts — and for our daughters. But as breast cancer awareness becomes an increasingly pervasive branding opportunity, perhaps it’s time to consider what the glut of pink says about our attitudes about the meritocracy of disease, and the ways in which we dispense compassion.

Plenty of other deadly diseases – HIV, alcoholism, melanoma, throat cancer – affect thousands of Americans yet don’t receive the same focus as breast cancer, perhaps because it’s easy to blame these people for their disease, Williams writes. She wonders: “What if we had even a measure of the same generous, unconditional support we give this month to women with breast cancer for those living with less morally unambiguous conditions? What if October wasn’t just pink? Imagine how much suffering we could eliminate.”

The message that the pink-ribbon promoting has perhaps gone too far is not an easy one to convey. Many people simply don’t want to hear it. When a commenter at a NESN sports blog said he thought it was “a little overboard” for NFL football players to wear pink this month, he was told to “shut up.”

Still, there seems to be a groundswell of discussion at a thoughtful level we haven’t really seen before. The New York Times reflected Monday on “pink ribbon fatigue,” observing that in spite of all the awareness and visibility, the battle against breast cancer hasn’t progressed to the degree we think it has. Guest columnist Dr. Barron Lerner writes:

Over 40,000 women still die from breast cancer annually in the United States, and strategies for preventing the disease have received inadequate attention and funding.

It is great to celebrate one’s survivorship from breast cancer, but it would be better to not have to be a survivor in the first place.

A number of readers responded with comments about their own pink ribbon fatigue – comments that were frank in a way we might not have seen even five years ago. One person wrote that she boycotts pink products “because I feel they are nothing more than a marketing gimmick. Companies are playing on the emotion of the ‘pink’ in order to get people to buy their products, which is a sleazy manipulation tactic and belittles those who do have cancer – of all kinds.”

Someone else wrote, ”It’s to the point where I want to say to these perpetrators of the Pink Ribbon culture, “What? Breast cancer? Never heard of it before! Glad you are making me AWARE!”

From another commenter who works for a breast cancer research project:

Sometimes I experience what I call pink ribbon guilt. People pour money into breast cancer organizations, snapping up every processed food and made-in-China tchotchke they come across. All the while the cancers that kill people faster and with more certainty get very little attention in popular media, and therefore get very little funding. The worst pink-ribbon-guilt moment was hearing a melanoma patient relate the story of how she couldn’t get a chair massage at her chemo appointment [because] they were for breast cancer patients only.

It’s ironic that in the span of little more than a generation, we’ve gone from speaking in whispers about breast cancer to creating a din that’s so loud and so chaotic, it’s in danger of stampeding off the cliff.

Passion is an incredible force. It can move mountains. When it’s harnessed in the right way it can change how we think and perceive and behave about health. It would be a bitter injustice if the pink ribbon turned into an empty symbol, and all because we didn’t know how to say “enough.”

Photo: Associated Press

Rewriting the mammogram rules

The fallout from Monday’s news that mammograms are being recommended less often for women continues to spread far and wide. Reactions have spanned the gamut: confusion, suspicion about the motives behind the new recommended guidelines, and even outright anger.

To summarize, here’s the exact wording of the U.S. Preventive Services Task Force’s new guidelines:

The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.

The USPSTF recommends biennial screening mammography for women aged 50 to 74 years.

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of screening mammography in women 75 years or older.

The panel gives a "C" recommendation to mammography for women in their 40s, meaning that while there may be some benefit to individual patients, there is "at least a moderate certainty that the net benefit is small. Every-other-year mammograms for women ages 50 to 74 received a "B" recommendation, defined as "high certainty that the net benefit is moderate or there is moderate certainty that the net benefit is moderate to substantial."

Needless to say, this flies in the face of the messages women have been hearing for the past umpteen years about screening for breast cancer. The debate has been raging fast and furious, including right here on the West Central Tribune’s Web site.

"Better a false positive than a missed positive!" was one person’s opinion. Commenters called the recommendation "ludicrous" and "hogwash."

If there was ever any doubt that the public was paying heed to being screened for cancer, look no further. They’ve clearly gotten the message. There’s just one problem: The thinking behind the USPSTF’s new recommendations is more nuanced and less cut-and-dried than many people seem to believe.

First, this change is not all that new. There has been a back-and-forth debate for many years over the benefits of mammography screening for women in their 40s. The evidence that it’s clearly beneficial for the general population of women in this age group has never been particularly strong. This does not mean it’s worthless, especially when it comes to individual women and their own health history, circumstances and preferences. What it means is that the existing data don’t conclusively demonstrate that all women should be screened annually, starting at age 40, in order to improve the rate of early breast cancer diagnosis and decrease the number of deaths from breast cancer.

Second, no one is saying we should stop screening altogether or that we should withhold mammograms from women who really want them. The USPSTF’s own clinical summary for women in their 40s says it quite clearly: "Do not screen routinely. Individualize decision to begin biennial screening according to the patient’s context and values." (Emphasis added.)

I suspect what we’re seeing here is the beginning of a new overall approach to screening in general, one that is perhaps more balanced and more realistic about the relative harm vs. benefit than we’ve seen in the past. In fact, we saw hints of this last month already when the American Cancer Society stated the benefits of cancer screening have perhaps been overstated – then quickly backpedaled from its statement.

Experts in population health have long known there are limits to what screening can accomplish. This article, first published by Slate five years ago and reposted this week, demonstrates how this has been an ongoing debate:

Clearly, years of strong, scare-oriented public health messages, particularly with regard to breast cancer screening – "Don’t be a victim" and similar slogans – have gotten through to the public. The dogma that more is always better when it comes to cancer screening has taken hold, undiluted by any sense of screening’s drawbacks.

Yet there are drawbacks – ranging from the risk of false positives to the more complex issues of overdiagnosis and overtreatment. While early detection can certainly have benefits, it’s not true that screening can only help – and can’t hurt. Indeed, skeptics within the medical community, including the authors of the JAMA survey, have started to become more vocal in an effort to create a more balanced public view.

The operative words here are "public view." It has always been challenging for advocacy groups, such as the American Cancer Society, to educate a public that varies widely in its level of health literacy and receptiveness to the message. Simple messages – "get screened" – seem to work best but they unfortunately gloss over the complexities and tend to leave the public with information that’s incomplete or minus significant chunks of context. It’s no wonder, then, that people are confused and upset when they’re now hearing something that, to them, sounds different.

The New York Times talked this week to women and sifted through online comments, and found a fair amount of skepticism:

… Still there remains plain old confusion. Leslie Haltiner, a teacher’s aide in Denver, said she was uneasy with the idea of shifting her own approach to breast cancer detection based on new federal guidelines without first knowing the medical specifics behind them, and also what oncologists and breast cancer awareness groups were saying.

"Everything I’ve heard, from the health advertisements to the medical professionals, says that even if you don’t have a family history of breast cancer, it doesn’t mean you won’t get it," Ms. Haltiner said. "This sends a real confusing message. Wow, they’re doing a complete 180."

It’s also hard to take the emotion out of the issue. Almost everyone knows someone whose breast cancer was detected with mammography. Anecdotes can be so powerful that it’s easy to overlook the fact that the plural of "anecdote" is not "evidence."

What are we to make of a recommendation that comes from an organization described as a government panel? The U.S. Preventive Services Task Force falls under the umbrella of the Agency for Healthcare Research and Quality, itself an arm of the U.S. Department of Health and Human Services. The task force’s mandate is to "conduct scientific evidence reviews of a broad array of clinical preventive services, develop recommendations for the health care community, and provide ongoing administrative, research, technical and dissemination support."

Plenty of critics see the new mammography recommendation as a first step down the slippery slope of government-dictated rationing of care. Is this because the recommendation happens to come from a nonpartisan government panel (the members of whom, by the way, all work in the private sector)? It’s worth keeping in mind that organizations such as the American Cancer Society, which continues to call for annual mammograms for women in their 40s, are in the business of advocacy and will likely take a stance that’s consistent with this mission. It’s also worth pointing out that not all advocacy groups are in consensus on this issue; the National Breast Cancer Coalition backs the new USPSTF recommendations, as does the National Women’s Health Network.

As I read the news stories, the analyses and the online comments in reaction to these new evidence-based guidelines, the word that comes to mind most often is "disturbing." I’d like to think there is some support among American consumers for evidence-based medicine – that is, medical intervention that has been shown to be effective and to achieve the desired outcome, vs. simply offering intervention for the sake of offering something or because the patient wants it. I’d like to think we’re capable of considering the facts instead of reacting in emotional knee-jerk fashion.

Some commentators have already started to wonder whether the American public is truly on board with evidence-based care. Physician-blogger Dr. Kevin Pho thinks it may be a tougher sell than anyone realizes: "The thought that ‘more medicine is better testing’ is so pervasive in the mindset of the American public that it’s going to be extremely difficult to scale back testing in this country. Even if it’s the right thing to do." He followed up these thoughts with another post that explores what the backlash on breast cancer screening might mean for health care reform.

My guess is that most physicians, and most women, will probably stick with annual mammograms starting at age 40. Perhaps a minority of women will appreciate that they can skip the annual mammogram routine without being viewed as irresponsible or needlessly putting their health at risk. Maybe some day our thinking will shift more towards the evidence. But right now, I’m not sure physicians are ready to embrace the USPSTF’s new guidelines, and I don’t think the American public is ready for them either.

Update, Nov. 20: The New York Times analyzes how the debate over cancer screening has revealed a culture clash in medicine. The Everwell site takes a look at five of the top myths about breast cancer screening and the USPSTF’s recommendations. Gary Schwitzer, a blogger and journalism professor at the University of Minnesota, also provides a running commentary on how the mainstream media has been covering this issue.

West Central Tribune file photo by Bill Zimmer

Pink October

Once again it’s here – the breast cancer awareness campaign that has everyone thinking pink during the month of October.

It’s fluffy and feel-good and surely on behalf of a worthwhile cause. But if you listen closely, you can hear an increasing chorus of grumbling about the pink tsunami or, as I recently heard someone call it, "all this girly pink-ribbon crap."

Ouch. The truth is, many women are becoming weary of Pink October and what seems to be a rising tide of commercialism that doesn’t really match the spirit of what this campaign is supposed to be about.

Jeanne Sather, who blogs at The Assertive Cancer Patient and has been living with breast cancer for several years, is not a fan of the whole pink ribbon thing. "I didn’t like pink BEFORE it became the color of ‘breast cancer awareness,’ and now I loathe it," she writes.

Retailers right, left and center are offering pink-themed merchandise, then donating a tiny share of the profits to cancer research. The reason the pink marketing campaign makes me so angry is that it encourages women to indulge in retail therapy while trivializing a very serious disease.

I Googled the phrase "pink ribbon" and came up with more than 10 million listings: T-shirts. Jewelry. Key chains. Baseball caps. Refrigerator magnets. Pink rubber duckies. Coffee mugs. Party-favor pill boxes. Aprons. Teddy bears. (Does anyone else see a rather sexist theme emerging here?) Dog leashes. Air fresheners. Soap. Yoga sandals. Playing cards.

Men get breast cancer too, and it makes you wonder how they feel about this onslaught of pink. Lonely and invisible? I would say so. Women with cancer other than breast cancer probably won’t say it publicly, but many of them will quietly confide to certain friends that they feel left out of the party and even somewhat devalued.

One of Jeanne Sather’s commenters puts it frankly and honestly:

… It’s all so sexy and glam and cute and about saving young perky boobs and not actually dealing with sick people. I’m coming at this with a husband who has an aggressive blood cancer, and this is probably terrifically immature, but I see all the pink products and fundraising and awareness, and I feel like people with almost any other kind of cancer are orphans in a sea of pink crackers and pink tea.

In past years Jeanne has led a boycott and letter-writing campaign against the pink merchandisers. This year she’s mostly sitting on the sidelines although she plans to continue blogging about it. In a recent post, "Lowering the bar," she explains what has been going on in her life lately:

My health is continuing to deteriorate, slowly but surely, and I can’t do all the things in a day that I did even six months ago. I can no longer travel unless someone goes with me. That is frustrating. It is also tremendously upsetting. But it is true.

And, I would add, it’s one of the realities of cancer that pink refrigerator magnets and pink teddy bears don’t really alter. I’m going to give Jeanne the last word here because she says it best: "If you really want to help people like me, give us affordable, guaranteed health insurance. Don’t buy products with pink ribbons on them and think you are helping. You’re not."

Update, Oct. 2: The Boston Globe takes on this same issue in their weekend magazine.

Winner takes pink; loser gets… nothing?

The Twin Cities will be awash in a pink tide this weekend for the Susan G. Komen Race for the Cure.

It’s going to be a big deal. Thousands of people are expected to participate in the events Saturday and Sunday: a 5K race, 5K and 1K walks, a wheelchair race, children’s events, a health expo and a survivor celebration. In Minnesota, Susan G. Komen for the Cure has raised $25 million over the past 15 years, much of which is spent in Minnesota on breast cancer awareness, education, outreach, screening and research.

It’s all well justified. Breast cancer, after all, is the single most common cancer among women in the United States.

But seeing all the hoopla, the pink ribbons and the commercial sponsors climbing onto the bandwagon, I can’t help but wonder how other women – you know, the ones who have cancer other than breast cancer – feel about it. Do they feel left out? Not as worthy of attention? Lonely? Maybe even a little resentful?

This in no way is meant to diminish what it means to have breast cancer. And it’s a genuine accomplishment for women to have raised so much awareness and support for a disease that in the not-so-distant past was seldom publicly addressed.

It’s worth asking, however, whether the breast cancer community, with its sheer numbers and vocal activism, has unwittingly cast a long pink shadow over everyone else.

If you look at the statistics, women with cancer other than breast cancer are frankly a minority, outnumbered on every front. In 2008, an estimated 182,460 women in the United States were diagnosed with breast cancer, according to the American Cancer Society. Lung cancer came next – 100,330 cases among women last year – and colon cancer was third, with 54,310 new cases among women last year.

Look at some of the other cancers that women get: melanoma, 27,530 new cases in 2007. Kidney cancer, 21,260 new cases. Brain tumors, 10,030. Hodgkin and non-Hodgkin lymphoma, 34,490 new cases combined. Pancreas, 18,910.

At the Willmar Cancer Center, breast cancer accounted for 18.3 percent of all cancers diagnosed and/or treated locally in 2007. In fact it is the most common cancer among women that local health providers deal with or treat in some way.

When these are the numbers, it makes sense for cancer-care programs and community projects to target their resources to reach the most people. And that’s what many of them have done: here, for example, here, here and here. Women and their families and friends don’t have to go too far to find information, services and support to help them weigh their treatment options, live well during treatment and afterwards, and promote awareness in their community.

Sadly, however, this often becomes a zero-sum game. There are only so many resources, after all, to go around. There’s only so much money and compassion and awareness to spread around. Inevitably there are gaps, especially for younger women who are in an age group that’s a minority in the cancer world to begin with.

Local statistics in the annual Willmar Cancer Center report aren’t broken down by gender. But of the 13 people who were diagnosed with melanoma or had their first course of treatment for melanoma there in 2007, it would be interesting to know how many of them were women. Ditto for the other statistics. How many of them lived in Kandiyohi County and how many came from farther away? Was there any way they were able to connect locally with other women going through the same thing they were? Did they feel supported by their community?

This isn’t a plea for pouring more money and resources into new or additional services or fancy awareness campaigns. It’s a plea to revise our perspective into something broader.

Cancer is a burdensome disease, no matter who has it or what kind they have. We owe it to the cancer community to be more inclusive, so we don’t unintentionally make the journey harder for some of them than it needs to be.