Re-Posting from Gayle Sulik: Factoids and Impressions

Factoids and Impressions

BY GAYLE SULIK, ON OCTOBER 4TH, 2011

One might assume that anything involving breast cancer awareness would be based on the best available evidence. Unfortunately, this assumption would be wrong. I’ve evaluated hundreds of campaigns, advertisements, websites, educational brochures, and other sundry materials related to breast cancer awareness only to find information that is inaccurate, incomplete, irrelevant, or out of context. We could spend the whole year analyzing them. For now, consider a print advertisement for mammograms by CENTRA Mammography Services. [Note: I previously shared this ad back in July in an essay called Mammogram Mania.]

The full-page ad was published last October in a special issue magazine devoted to breast cancer awareness. Such special issues are now a common feature in magazines and other media outlets during National Breast Cancer Awareness Month. They include personal stories, information, interviews with experts, fund-raising events, pink ribbon promotions, and of course a slew of product placements that come with their own versions of “helpful” health information.

Awareness advertorials tend to include factoids and impressions, and the impressions come first.

Color matching. The reader’s eye moves between a pink foreground and a matching pink sweatshirt. Pink, we already know, signifies breast cancer awareness.

Joy, nature, sisterhood, and health. A group of smiling women, friends in fact, of varied ages and ethnic backgrounds walk outside, arm in arm, wearing sneakers and sweatshirts. The sunshine, trees, and “just do it” attitude nearly walk off the page.

The hook. After the impressions are set, they are reinforced and followed with a directive. A large caption: “All your friends are doing it,” is followed by a sheepish, “Shouldn’t you?” Peer pressure directed toward adult women to sell mammography services. CENTRA follows up its peer pressure with a finger-pointing guilt grip.

“With early detection, diagnosis and improved treatment, women are beating breast cancer. But still, many of you aren’t doing the one thing that may help prevent and diagnose it in the first place, a mammogram.”

The “shame on you” accusations are reminiscent of the bad old days of paternalistic medicine, in which doctors used fear of physical and/or social mutilation to promote breast examination and medical intervention. In the 1940s and 1950s physicians and popular health magazines used imagery of women “blowing their brains out” to represent the seriousness of their responsibility to examine their breasts. At the same time, the words are misleading and/or inaccurate.

Early detection is a common and overused phrase that gives the impression that mammograms unequivocally find cancers early, so early in fact that if they are found on a mammogram and then treated, you will not die from breast cancer. Not true.

• Some breast cancers are slow growing and unlikely to spread.
• Other breast cancers grow and spread quickly.
• The most important factor related to whether a person’s breast cancer is likely to cause death is related to tumor biology.
• Stage zero breast conditions such as DCIS are not in themselves life threatening. They are called precancers or risk factors for invasive breast cancer.
• People found to have stage zero conditions may develop an invasive breast cancer later in their lives, but most won’t.
• People diagnosed across stages I, II or III have a recurrence in 20 to 30 percent of cases. The longer someone lives without having a recurrence, the greater the chance that there won’t be one.
• Clinical trials show that population screening reduces the mortality rate by 15 to 30 percent.

In reality, the detection of a cancer on a mammogram before it has become symptomatic has been translated into the phrase early detection. Although routine screening sometimes leads to a reduction in mortality from breast cancer, as stated above, improved treatment for breast cancer is more likely to account for known reductions in mortality. Still, somewhere around 40 to 41 thousand women and men die each year from metastatic breast cancer regardless of whether or not their cancer was detected on a mammogram.

The ad does not include any of this information. Instead it states that mammograms the “one thing” that matters to “prevent and diagnose” breast cancer in the first place. Mammograms do not prevent breast cancer, and they identify (with varied degrees of accuracy) cancers that are already there. The National Cancer Institute reports that screening mammograms “miss up to 20 percent of breast cancers that are present at the time of screening.”

To show how much their mammography services are needed, the ad provides a 2010 incidence statistic of 207,090, and claims that “a mammogram detects 90 percent of all breast cancers.” I don’t know where that statistic comes from. The ad includes no information about how many results are inconclusive, false-positives, or false-negatives. It does not give the number of deaths.

Beneath the hours of operation and contact information for CENTRA’s mammography centers, the box reads: “Why risk it? Be proactive!”Playing on both the fear and uncertainty of breast cancer as well as the general social expectation that individuals should be responsible and proactive medical consumers, the ad reinforces its earlier message that preventing breast cancer is completely within women’s power. Should a woman learn at some point in her life that she has breast cancer but did not take the action recommended in the ad, the outcome must be due to her failure to act as warned. The exclamation point emphasizes the importance of the directive.

If the ad were just an ad it could be taken at face value, but it is not just an ad. It is yet another cultural message within a sea of messages in the name of breast cancer awareness that plays on fear of breast cancer, hope for the future, and the goodness of jumping on a pink bandwagon. At the same time, these types of ads and campaigns are almost always accompanied with some type of “legitimizing” evidence. The information sounds right. It rings true to the reader but without telling the whole story. Of course, the ultimate appeal is to get consumers to buy the product.

Should women get screened for breast cancer? It’s clearly not a simple answer. It requires deep thought about the strengths, limitations, risks, and benefits of this diagnostic tool. Some women will benefit from it. Others will not. The conditions vary. Yet the “just do it” tide in breast cancer awareness floods advertisements, campaigns, and product placements.

Thank you, CENTRA Mammography Services, for telling me what to do for my own good, but I can think for myself! [That's an exclamation point to indicate strong feeling.]

–

- Bravo, Gayle, for putting it all so clearly. I recommend Gayle's blog: GayleSulik.com, and her book "Pink Ribbon Blues."

Anger

I thought I had pretty much skipped over Anger.

Denial, yes. It was brief, but it was there, in my “let me give it a week, and if it’s still there, I’ll call the doctor.” Depression, Bargaining, Acceptance – oh yes. Been there, done all of those. But I couldn’t really summon up any anger… who or what is to blame? How can I feel anger, when I have no place for it to go?

I will own up to a heightened state of irritation - particularly towards well-meaning individuals who offer unsolicited advice. “I hear a good attitude is really important,” says one, patting me gently on the arm. “Make sure you stay away from sugar (soy, caffeine, aluminum-based deodorant, plastic bottles, etc.). It feeds cancer cells,” says another. My favorite advice was the email from my ex-husband, who forwarded a newsletter from Johns Hopkins entitled “Cancer Update.” I can’t bring myself to include the whole thing, but here are a few particular gems:

1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size. READ: WE’VE ALL GOT IT, AND NO ONE IS FUCKING EVER CURED!

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastro-intestinal tract, etc, and can cause organ damage, like liver, kidneys, heart, lungs, etc. READ: THOSE DRUGS ARE ACTUALLY KILLING YOU OFF, PIECE BY PIECE!

7. Radiation, while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs. READ: DITTO FOR RADIATION!

10. Surgery can also cause cancer cells to spread to other sites. READ: THAT LUMPECTOMY AND AXILLARY NODE DISSECTION YOU HAD JUST MADE THINGS WORSE!



11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply… Sugar is a cancer-feeder…. Sugar substitutes like NutraSweet, Equal, Spoonful, etc. are made with aspartame, and it is harmful…Table salt has a chemical added to make it white in color. …Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. … Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer… Avoid coffee, tea, and chocolate, which have high caffeine…. Water - best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap. READ: JUST DON’T FUCKING EAT OR DRINK EVER AGAIN AND YOU’LL BE OK!

and my absolute favorite….

15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, unforgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.

If the letter weren’t so fucking ridiculous, and it didn’t come from my ex-husband, it would have made me angry. I’m guessing it made a lot of people who received it angry (even if their anger did “put the body into a stressful and acidic environment"). As it was, I just laughed (an irritated laugh, complete with eye-roll) but decided it wasn’t worth the gift of my anger. And then I put on my favorite T-shirt, which reads, “Unless you’ve found the cure for stupid, please don’t tell me about it.”

I’m always taken aback by how my feelings take me by surprise – how they truly seem to come from nowhere. One minute, I’m reading Tina Fey’s “A Prayer for my Daughter” out loud to Larry, and laughing. The next minute I can’t finish the last paragraph because I’m choking back tears. I find these moments unsettling, as they don’t mesh with my perception that I am calm, stolid and in control. Raising five children has toughened me: you don’t survive teenagers (or divorce) without developing a pretty thick skin. Even the brutal honesty of five year olds makes me laugh. Last night Rachael looked up at me and announced, “I don’t like Mommy because she doesn’t have any hair.” Chloe looked at me, horrified, and said, “Rachael, you’re hurting Mommy’s feelings!” Rachael looked surprised, but I smiled and said, “It’s okay,” because I know five year olds like I know the back of my hand, and I knew she meant that she didn’t like the way Mommy looked without hair. I don’t like it either.

Last week was particularly miserable: the sort of week that leaves you full of crappy feelings, and no place to let them out. I was coming off Round 4 of chemo, and the cumulative effects of that round and the three previous rounds had left me pretty darn uncomfortable. I was also saddled with a pile of extra-curricular activities a mile long. Two concerts, rehearsals, a talk, plus work and kids – all while battling low-grade nausea, mouth sores, headaches, a strong metallic taste, aching bones, insomnia and a bad cough. Let’s just say my irritation and my frustration were building. Big time.

Friday afternoon I finished work, picked up some groceries, Saturday’s breakfast at the bakery and fish for dinner at Captain Marden’s. I dragged the bags into the house, put things away, and looked at the clock only to realize that it was already time to meet the twins at the bus. So I called the dog, slid my steroid-puffy, aching feet into a pair of flip-flops, and headed up the street to the bus stop.

We live halfway down a steep hill, on a dead-end road with a cul-de-sac. The bus driver has to navigate a narrow bumpy road up the hill to the mouth of the dead-end, then make a sharp turn, and floor it to get up the next steep hill. In the winter she can’t make it, and we slip and slide up our dead-end road and all the way down the hill (no sidewalks) to meet her at the main road bus stop. But it is spring, now, and we have our bus stop back.

As I flip flopped my way up the dead end road to the stop, I saw orange cones blocking the hill road. From the top, I looked down the street to see what was happening. It was difficult to see down the street because of new construction at the bottom: for several weeks the workers have been parking their badass trucks with the massive wheels carelessly in the road, making it difficult for cars to get by. But I could see orange cones on the clear side, and realized that the road was blocked at both ends, and the workers were connecting a water line.

My chemo brain works slowly these days (Item 6 in the Cancer Update – my whole body is being poisoned!), but it dawned on me that because of the dead end, there would be no way for the bus to detour and come up the hill a different route – it would not be able to turn around or get back down. In a growing panic, I began running down the hill - flip flop flip flop - with Satchel in tow, in the hope that I could reach the main stop before the bus did.

As I ran past the construction workers at the bottom I turned and yelled at them in frustration. “There’s a bus stop here – you’ve blocked the bus – how the hell is she supposed to get up the street?” They looked at me half curiously (ah yes, strange pale puffy woman with scarf on head), then to a one, shrugged and turned away. I kept running.

I got to the bus stop too late – the bus was gone, and Rachael and Chloe were still on it. I stood there, panting from my run, frantic and frustrated, wondering what to do. Would she come back? Take them back to school? Should I run home, or stay put?

And there it was, the anger - as sudden and overwhelming and surprising as my recent tears over Tina Fey. It wasn’t pure, this anger, but diluted with guilt (why didn’t I anticipate a roadblock, and leave earlier?), and frustration at my inability to solve the problem immediately. I imagined both girls sitting on the bus, looking out the window, searching the road, wondering why Mommy hadn’t come. They are unusually anxious these days, asking daily questions about where I’ll be, and who’s going to babysit them when I go to the doctor, and if I am going to die. What were they thinking as the bus drove away in the wrong direction, with no Mommy to pick them up? I.just.have.to.be.there.

I stayed there, huddled, blinking back tears, taking deep breaths, trying to think calmly. The twins’ bus driver is a sweetheart. She knows them by name and gives them candy on Fridays. She asks me how I’m feeling, and once gave Larry her phone number in case we ever need extra help. She would figure out where I was, and bring them back. I should stay put.

It was a long fifteen minutes, but the bus came back. Lisa looked relieved to see me and rolled down her window. “I didn’t know what to do with the road closed,” she shouted. “I waited up at another stop, then thought to check down here.” Rachael and Chloe looked relieved to see me, and to see familiar territory, hopping down the steps and coming over for kisses. I thanked the bus driver, apologized for missing the drop off, and took the girls’ hands to start our walk home.

But as we turned the corner and started back up the hill, my anger suddenly came flooding back. It burbled and roiled, mixed with exhaustion, anxiety, and guilt – whatever was brewing came together in a potent stew, fueled by the careless indifference of the construction workers; their shrugs and rolled eyes. As we closed in on the site, I began screaming like a fishwife.

I can’t remember what I said (though I’m sure it will come back to haunt me through the mouths of five year olds), but it involved many fucks, fuckings, fucktards and assholes. I ranted and raved about Lack of Consideration and Lack of Communication and the Safety of Small Children. I went on and on, while the majority of the men kept their heads bent over their digging and hammering, and those that watched exuded a particularly male brand of unconcern and deafness. Meanwhile, Rachael and Chloe and the dog, all excited and confused by Mommy’s theatrical performance, danced around me in increasingly wider circles.

And then, just as suddenly, I was done. I grabbed both girls’ hands, and fueled by the adrenaline rush from all that anger, was able to make it back up the hill, flip flop, flip flop.

We reached the top of the road, and there were the five cones – and a large metal DETOUR sign lying on the ground. With a final, childish flash of fury, I said, “Come on, girls, we have a job to do.” I grabbed two cones and threw them in the woods at the side of the road. Rachael and Chloe each grabbed one of the remaining cones, and the three of us quickly dispensed with all the cones and the sign before continuing on home.

Denial? Check. Anger? Check. Depression? Check. Bargaining? Check. Acceptance? Check.

So tell me, what comes next?

The Big, GodAwfulPink, Elephant...

I've got writer's block. Noting the date of my last post, it's been going on for a while.

I can't write about breast cancer, and I can't write about anything else.

I read a particularly mediocre book the other day - it was called The Middle Place - and was a memoir (I use the term loosely) written by a women with breast cancer whose father was subsequently diagnosed with bladder cancer. It was a classic example of the kind of memoir that gives the genre a bad name: a generic "telling" of events and feelings. I suppose most memoirs tell generic stories... a good memoir is all about the telling, after all. But if the author meant to convey what it's like to be a patient, a parent and a daughter in the midst of all these nasty proliferating cells, she didn't quite get it across.

It's early days, but there are no moments, as of yet, that have been unusual in my story. I'm not the first mother with five children to deal with this shit. I'm not the first teacher to explain to her young students about bad cells and bald heads. I'm not the first cellist who can't play because her arm is too fucking sore. I'm probably not even the first woman more concerned with losing her hair than a boob. ("I'm not shaving my head in solidarity, Mom," says the 17-year old. "Not with my profile.") We don't run voluptuous in this family, but we all have thick, curly hair that we're pretty vain about. And I'm not the first woman with breast cancer who finally found her soulmate, only to have the length of her marriage threatened way too soon.

I don't know if all five year-olds are as curious as mine, but I do enjoy their "hands-on" approach to the situation. At first, pre-surgery, it was "Can I feel the bump, Mom? Can I feel it again? Is it bigger today? Does it hurt?" Post-surgery, they developed a fascination with my suction drain, which pulls all the undesirable fluids out from under my arm. "What color is it today? Is there still blood in it? It looks like apple juice!" Pretty soon, once I'm in the throes of chemo, they will want to rub my bald head. And down the road, to see my radiation tats. (Mental note: hide the Sharpies.) I imagine a future Monday morning Kindergarten Show-'n-Tell: "My Mommy threw up FIFTEEN TIMES this weekend!"

Maybe I'll post pictures of the hats I'm going to knit.

We'll see.