I wrote this article about how to support a friend through breast cancer diagnosis and treatment for Natural Health Magazine. It ran in the October 2010 issue. Every time I tell people that I wrote an article about how NOT to put your foot in your mouth when talking to your friend with cancer, they beg me to send them a copy of the article. Well, I can no longer find the magazine’s link, so I’m posting the article below. This version is a bit shorter than the original because I removed the names of  expert sources and their quotes just in case they’d rather not appear on my blog. Hopefully the magazine won’t ding me for copyright violation. (Note: if this post disappears…that’s why.) But, in the meantime, please feel free to pass these tips along to friends and family members. You can also add your own suggestions to the list via the comments section. 

When a friend drops the BC-bomb:

DO

Be concrete. One of the least helpful things you can say is ‘don’t hesitate to call if there is anything I can do. Instead, look at what’s on your friend’s plate and troubleshoot. Offer to walk her dog, pick up her first grader after school, or drive her to radiation every Monday, Wednesday and Friday. Cancer is a full-time job. Think of specific ways you can help out.

Listen. Let your friend be upset, angry, fearful, or confused. You don’t have to fix it (hint: you can’t) or even cheer her up. You just have to be present. Don’t try to change how she’s feeling. The best thing you can offer is to meet her in whatever space she’s in.

Be discrete. If your friend chooses to tell you, first and foremost honor her privacy. Ask if she’d like the news to stay between the two of you. If the answer is “well…it depends,” follow up with “is there anyone you’d like me to tell?” This is delicate territory. Let her call the shots. 

Clue in. Take your cues from her. If she wants to vent about her cancer, fine, but many women with breast cancer want an outing with friends to be a reprieve instead of a pity party or a hashing out of the latest details. Not sure whether to broach the subject? Here is some wording that can help broach the conversation: “I’m sure there are times when you’d rather not talk about it. If we are together and it doesn’t come up, should I assume this is one of those times? Or will you think I’m an insensitive jerk for not mentioning it?” 

Stay in touch. Cancer treatment can be a lengthy affair. Kudos for dropping by after her surgery but don’t forget about her during the weeks of radiation and/or chemotherapy. A weekly phone call or email is all it takes to let her know you’re still in the picture. Note: she needs a friend, not an obligation. If you send of leave a message, voicemail or text, assure her that she doesn’t need to get back to you but that you just wanted to let her know she’s in your thoughts.

DON’T

Over share. No matter how inspiring your yarn, now’s not the time to tell your friend about your mother-in-law’s bout with breast cancer, your sister’s false alarm, or your Aunt Nelly who died when her breast cancer spread to her bones. The desire to connect is human. Knowing when to zip it is divine. 

Insert doubt. As long as your friend is working with qualified medical professionals, do not question her treatment decisions. A breast cancer diagnosis opens a Pandora’s box of difficult decisions: lumpectomy vs. mastectomy? reconstruction or no? Unless you are a breast cancer surgeon or oncologist, do not second-guess her choices. She needs to feel supported, not doubted. 

Pummel her with pink. Pink ribbons are everywhere but not every woman with breast cancer wants to tie one on. If she chooses to embrace the ribbon, by all means, pink it up, but wait for her nod before hitting the “send” button on a bouquet of pink roses.

Look for the smoking gun. Don’t ask your friend how/where she thinks she got breast cancer. Unless she has a clear family history (a scant 5 to 10 percent of cases), most women never know, and the question says less about your concern for her and more about your fear for yourself. If you’re scared about your own risk, share your feelings with your doctor, your partner, or even a therapist, but don’t look to your friend for consolation. 

Make demands. Your cousin’s wife may be a fantastic breast cancer surgeon but don’t insist your friend see get a consult. If she asks you for suggestions or referrals, jump right in. But, otherwise, assume she’d ask for a medical referral if she needed it. A big part of the first few weeks is narrowing the cast of characters (breast cancer surgeon, plastic surgeon, oncologist, etc…), friends who keep tossing names into the pot can inadvertently add to the stress of a diagnosis instead of subtract from it.

 

The Mammography Debate

March 5, 2010

Last Fall, I gave a celebratory cheer when the new mammogram guidelines hit the news. As a health reporter, I’d long been privy to the fact that there is no medical evidence supporting annual mammograms for all women over 40. And it drove me nuts that no one seemed to care. All women over 40 kept lining up to get their boobs squished every year, like clockwork.

“Eureka!” I thought when I saw the headline. “Someone finally came to their senses.”

That someone was the United States Preventive Services Task Force, a 16-member panel of experts. Our tax dollars pay them to peer into such pressing issues as—does breast cancer screening really work?

Peer they did, and what they found was a dearth of scientific evidence supporting the current guidelines of annual mammograms for all women over the age of 40. As it turns out, breast cancer screening for all is not only a waste of time and money but the annual event feeds a cauldron of fear and erupts in false alarms for hundreds of thousands of women.

Here’s one way to look at the pros and cons of mammograms for all women over 40, via the NYT’s “Gauging the Odds (and the Costs) in Health Screening:”

The numbers show that about 2,000 women need to be screened regularly for a decade to avert one breast cancer death.

But…during that decade up to 20 women screened will be “overdiagnosed” and get radiation, chemotherapy or a mastectomy unnecessarily.

About 5 to 15 women will get treatment at a younger age than they would have otherwise, without improving their health outcomes.

Most were going to do fine without screening by beginning treatment of their cancer when the symptoms became evident,

…and a few were destined to die whether or not they had early screening because their cancer was fast-growing.

So, unless a woman has unusual risk factors for breast cancer, the Task Force recommends screening start at age 50 (not 40) and happen every two years (rather than every year).

Seems simple enough.

So, a few weeks later, when Mary and I were face-to-face with our primary care physician, I asked, if Mary (who had recently turned 40) should get a mammogram.

Of course, this was a trick question. Like the validation-seeking patient I am, I wanted my doctor to say, “Why, no. As a matter of fact, the scientific consensus shows that Mary getting a mammogram is as useful as me waving a magic wand over her tatas.”

Time out for a confession: A part of me (the scared shitless part) wanted Mary to get the damn mammogram. I wanted her to line up like a good 40-year-old, get her boob squished, and get the all-clear sign. Because, like every other woman, I desperately want to believe that breast cancer screening works.

But it doesn’t. At least not the way we want it to work. And, yes, I was being hypocritical. How could I ignore the numbers? How was I different than people who refuse to face facts in global warming or evolution? In my darkest moments, I even found myself gently coercing Mary to get the mammogram. “Why not just get a baseline?” I said in my most sensible, medical-reporter voice.

Back in the doctor’s office, my rational and irrational selves were clearly in a tug-of-war. I desperately needed our doctor to squelch my panic. I needed her to be a bastion of evidence-based care.

So imagine my disappointment when she didn’t skip a beat. “Oh yes,” she said, “go ahead and schedule one. We aren’t going to change our recommendations based on one study.”

Whoa, wait a second. This wasn’t a single study. The new recommendation was the final distillation of more than a dozen studies involving more than 600,000 women. The Task Force is made up of the top experts in the field.

Is my small town doctor really second guessing their work? Or is it just easier to ignore the facts and placate women’s fears?

Last month, an editorial in the Annals of Internal Medicine reminded me of the tightrope doctors walk (not mine, obviously, but others) when it comes to managing evidence-based care with patients’ emotions. As reported by the NYT, the editorial shows “a divide has merged between doctors and patients—with doctors more inclined to accept the new recommendations and the patients wanting to stick to early and annual screening.”

I think it’s time that women (myself included) buck up and face facts about the limitations of mammography. Demanding that doctors practice defensive medicine serves no one, especially women. Mammograms offer nothing more than false reassurances in a world where breasts have come to be seen as ticking time bombs.

Easy for me to say, I will never need another mammogram—one of the few perks of double mastectomy. But I hope that next Fall, when Mary’s annual appointment rolls around, I’ll be calm and rational enough to weigh the facts and give her my blessing…to cancel it.

Radiation Mishaps Make News

February 10, 2010

As I’ve discussed here, I suspect radiation played a role in the onset of my breast cancer. How big of a role? I’ll never know. But between the ages of 12 and 14, I regularly received blasts of radiation for the monitoring of scoliosis. I don’t know exactly how many x-rays came my way in total, but I do know that protecting my breasts was never mentioned.

Later, as a health writer, I grew increasingly wary of medicine’s willy-nilly use of radiation. My concern escalated in 2008 when I wrote a piece for Time Magazine about the potential hazards of CT scans, especially for children. The basis of the story was two studies indicating an increased cancer risk associated with multiple CT scans. I was blown away to learn that each CT scan packs as much radiation as up to 500 conventional x-rays. Of course, CT scans can be a life-saving diagnostic tool and should absolutely be used when necessary, but my reporting found that they are widely overused.

Not to mention, the operator-error factor. One of the most disturbing tidbits I uncovered in reporting that story was from a CT technician who admitted that even though newer scanners can be adjusted to give children up to 50% less radiation (a standard recommendation), many technicians simply forget to reset the machine.

Needless-to-say, I was thrilled to see the New York Times tackle the issue of radiation safety these past couple of weeks, and I want to help them spread the word. What first grabbed my attention was this article about the lack of radiation safeguards. The people most often in harm’s way? Cancer patients.

Thousands of radiation errors are made every year, many of which are never reported to the FDA. Here are just a few of the most egregious examples from the NYT’s coverage, When Medical Radiation Goes Awry:

  • Patient A had just completed treatment for a brain tumor and received additional radiation intended for Patient B, who had breast cancer.
  • A 31-year-old woman with vaginal cancer was overdosed because of confusion over the method of measuring the strength of radioactive seeds…causing an overdose of radiation to her rectum and vagina.
  • A doctor implanted radioactive seeds in the wrong location in a patient with prostate cancer. The radiation oncologist then failed to promptly interpret a post-implant CT scan, which would have revealed the error.
  • A patient with breast cancer received a 50% overdose for 10 treatments because a wedge (a gadget used to shape the radiation beam) was mistakenly left out.
  • Another breast cancer patient, 32 years old, received 27 days of radiation overdoses (three times the prescribed amount).

Thankfully, I’m not the only person who was flabbergasted by the magnitude of these medical errors. The NYT’s coverage culminated today in the news that the FDA is finally going to “take steps to more stringently regulate three of the most potent forms of medical radiation, including increasingly popular CT scans.” I’m not a big fan of the FDA. I think the agency is spread too thin and given too little resources to get the job done. But, at the very least, maybe, someone is finally paying attention.

One Year and Counting

February 4, 2010

Well, the one-year anniversary of my breast cancer diagnosis came and went last week with little hullaballoo. Part of me was braced for an emotional tidal wave that never manifested. As it turned out, January 29th, 2010, was just another day. And, more than anything, I felt/feel lucky. Lucky that I’m on the other side of cancer (knock wood). Lucky that mine was the type that could be sliced out—I have a good friend with lymph cancer who will never have the luxury of another cancer-free day. Lucky that I’m back to worrying about the little stuff, like freelance work. Lucky that I get to move on with my life. Speaking of moving on, friends sometimes ask me what nuts-and-bolts lifestyle changes I made in the past 12 months, so I thought I’d make a little list. Of course, this is not meant to be health advice, I’m just offering a little window into what I did after my cancer diagnosis (aside from freak the hell out). So, here it goes:

  • Stopped drinking Diet Coke
  • Started drinking green tea
  • Started juicing in the mornings
  • Stopped eating sugar, wheat, soy and dairy
  • Went vegan at home
  • Traded anti-perspirant for natural deodorant (yeah, it sucks)
  • Got serious about buying only paraben-free soaps and shampoos
  • Bought chemical-free laundry detergent and dryer sheets
  • Traded soy milk for rice milk (I’ve eased up on the soy)
  • Reduced my use of canned beans
  • Replaced most of the tupperware in my kitchen with glass containers
  • Cut back on wine
  • Yoga, yoga and more yoga

None of these rules are written in stone. In fact, they fluctuate depending on the day. But, more days than not, I follow them, and my plan is to keep it up for a long, long time. I’m not naive. It would be silly to think any one of the actions above might ward off cancer. But it would be equally foolish to stick my head in the sand. I figure that the least I can do is to cut back on the number of cancer-causing, hormone-disrupting substances I invite into my home and body. After that it’s anyone’s game. This time around, maybe I’ll get lucky.

Whine

December 11, 2009

Science giveth and science taketh away. Just when I was starting to feel downright giddy about my diet, another study comes along and rains on my parade. I’d be a hypocrite if I only raved about the good news, so here’s my bad news for the week.

Researchers at Kaiser Permanente in California found that drinking alcohol may increase the risk of cancer recurrence in breast cancer survivors. More specifically, women who drank 3 to 4 servings of alcohol a week—roughly 3 to 4 glasses of wine—were 34 percent more likely to have another bout of breast cancer than women who drank little to no alcohol. My personal silver-lining is that the greatest risk was among post-menopausal, overweight women; neither one of which describes me (yet). But I feel as though I’d be tempting fate not to take this news seriously.

To be honest, this finding is less than shocking. Drinking has long been known to increase a woman’s risk of breast cancer because alcohol is estrogenic, meaning it increases the circulating levels of estrogen in the body, and estrogen—as we’ve discussed—is to breast cancer cells what Miracle Gro is to anemic backyard tomatoes. But the gap between knowing this information and its practical application is Grand Canyon-esque.

I’ve known about the link between breast cancer and alcohol for years but, at least before my diagnosis, I chose to look the other way. Like any self-respecting health writer I focused on research that supported my favorite indulgences, such as the stack of studies showing that wine is good for the heart. Since my family history is riddled with heart disease but has (had) nary a wisp of breast cancer, I easily rationalized a few glasses of wine a week. Heck, wine was practically a health food in my book.

That said, I was hardly a heavy drinker. I’d sip a glass of wine while I cooked, which was a couple of nights a week, plus drink a glass or two with friends on weekends. Although my weekly wine tally didn’t seem like much, it easily added up to 3 or 4 glasses a week—the same amount that showed negative consequences in the study above.

I swore off wine after being diagnosed with breast cancer. But, after six months of depriving myself of all of my favorite foods and food rituals (like drinking a little wine while cooking), I realized that living in fear of my favorite foods and beverages is downright depressing. So, in the past month or two, I’ve eased up a bit. Part of that has meant a return to wine, albeit less than I drank before. Although I’m not one to shift dietary course on the winds of a single study, this news does make me rethink my relationship with alcohol. While I don’t want to be a teetotaler, I might need to make wine more of a special-occasion treat. Sigh.

Soy Reprieve?

December 10, 2009

In the wake of my breast cancer diagnosis, I took a long, hard look at my diet. I stared down the contents of my refrigerator the way a crime victim glares at a line-up of possible perps. I wanted justice. I wanted revenge. I wanted to guarantee this wouldn’t happen to me again. (All the time knowing there are no guarantees.) Still, out went cheese, yogurt, and wheat (mostly). In came raw nuts, rice milk, and a staggering amount of fruits and vegetables. But one of the hardest transitions was saying goodbye to soy. I hung on with desperation, like a child hanging on to the last threads of her favorite blankie.

Eating soy meant I could still order a latte at Starbucks and—somehow—feel like I still had a toehold in the land of “foods normal people eat.” Saying yes to soy meant I could still indulge in things like eggless-egg salad and stir-fried tofu. But, after looking at the scientific research, I wasn’t convinced the natural phytoestrogens in soy wouldn’t ratchet up my body’s estrogen load. And, since I was going to the trouble of taking Tamoxifen to block the estrogen in my body, why possibly add to it?

My oncologist was no help, but, at least, he was honest. “We really don’t know if soy is helpful or harmful for breast cancer patients,” he said. Then he followed up with the mantra “in moderation it’s probably fine.” But “probably” was a far cry from the certainty I craved and when another health care professional questioned my continued intake of soy (saying something along the lines of “why play with fire?”) I decided he had a point. Maybe it was fine but what if it wasn’t? So, I said sayonara to soy foods.

But today I saw some news that made my shriveled taste buds perk up in hopes they may once again know the joys of soy. A study published in this week’s issue of the Journal of the American Medical Association found a higher intake of soy foods was associated with a lower risk of death and breast cancer recurrence among breast cancer patients in China. Researchers enrolled more than 5,000 breast cancer survivors (a nice big number) and followed them for nearly four years (not a decade or more, which would have been nice, but a solid length of time). Interviewers asked them detailed questions about their diet and closely tracked the amount of tofu, soy milk, and other soy foods the women ate. In the end, they found that soy intake was inversely associated with mortality and recurrences in the group. Meaning, the more soy the women ate (up to 11 grams a day), the lower their odds of dying or having a breast cancer relapse.

So, what about those plant estrogens? The scientists are placing their bets on the anti-estrogenic theory of soy. In other words, that plant estrogens directly compete with the body’s own estrogens for cellular parking spaces. When a plant estrogen glides into a parking space, other estrogens are forced to keep circling. Eventually, the game of musical chairs ends and the estrogen (now dizzy from driving in circles) is booted from the body. As far as we know, beyond being parking-space hogs, plant estrogens don’t continue to impersonate “real” estrogen and, therefore, they subtract rather than add to the body’s estrogen load. At least, that’s the theory this group is espousing. While this notion isn’t new to me, it’s nice to see some new scientific oomph behind it.

Of course I would be remiss in my duties as a medical writer if I ever suggested one should make a dietary change based on a single study. And, no, you won’t find me bingeing on tofu and washing it down with great gulps of soy milk. But I may just indulge in the occasional soy latte. (After all, who can afford them more than occasionally?) So, thank you to scientists who keep exploring the hinderlands of breast cancer research, and Starbucks here I come…

Pinked

October 13, 2009

Yesterday, I spoke with a reporter from the Detroit News. She is writing a story about breast cancer awareness month and was interested in talking to folks who are less than tickled pink by the proliferation of pink ribbons. (Who, moi?) I thought I’d blogged forward and backward about this topic, but I was caught a bit off guard by what seems to be the most obvious question of all.

“So, why is pink NOT your color?” she asked.

(Insert forehead-smacking moment here.)

How could I have not written at length about why (exactly) pink is not my color! Okay, loyal readers (all 3 of you) know that I am not a card-carrying member of the rah-rah, breast cancer sisterhood. Hence, maybe the name of my blog is self-explanatory. But I welcomed the chance to answer her question and thought I’d do so here as well. Because, believe it or not, until I was tarred and feathered in pink last February, I thought pink was a swell color.

Let me explain. In those awful two weeks after the “C-bomb” dropped, Mary and I schlepped around shopping for a breast cancer surgeon. My first inkling that  pink was no longer my innocent, cherry, childhood friend was when I entered the first breast surgeon’s waiting room. It was as if a flamingo had just vomited on the place. My eyes stung at the pink upholstery on the chairs, the pink wall-to-wall carpet, and the pink window treatments. The staffs’ outfits matched their surroundings, like lizards that evolve to look like rocks or leaves. Every nurse was peppered with pink-ribbons from her lapel pin to her pink shoelaces. And the pink suffocation didn’t end when you escaped the office, it followed you home, like a virus.

Every time I consulted a breast cancer surgeon, I left with a bag of pink SWAG. I felt as though I’d just attended the breast cancer Oscars–or a birthday party for 5-year-olds. I kid you not, I have a box of breast cancer tchotchies in my linen closet. (Seems like hubris to recycle that breast cancer business—never know when you’re going to need a brochure on metastasis.) Each goody bag revealed various assorted breast cancer bric-a-brac including a pink water bottle to quench my thirst after sitting in the waiting room for hours, pink binders to hold my important medical papers, a pink day planner to help me remember my radiation and chemotherapy appointments, a pink pen to write them down with, and a pink journal in which to record my pinkest of pink thoughts. (Just so you know…I am not making this up.)

Now, just for kicks, imagine a man newly diagnosed with prostate cancer. Picture his doctors and nurses showering him with baby-blue baubles. Maybe his gift bag includes a blue beer cozy, blue-ribbon-bedazzled sweat socks, and a blue notebook to keep track of his deep man-thoughts about how it feels to lose a part of his masculinity. Imagine the man slinging his blue tote over his shoulder on his way out the door. Let’s stop and ask ourselves: Is this supposed to make the man feel better? Does his possession of a blue-ribbon festooned notebook make him feel welcomed into the “sacred brotherhood” of prostate cancer patients? Did a chipper “survivor” pop into the examination room to hold his hand and shoot him knowing looks while the doctor outlined his surgical options? (Again, I’m not making this up.)

This scenario sounds insane when you put a man in the picture, but this is exactly what happened to me last February, and I’m guessing it happens to thousands of women every year. Granted, some breast cancer patients undoubtedly eat pink ribbons for breakfast, lunch, and dinner and that’s fine, but let’s make some room for those of us who aren’t hungry.

This pink-coating of breast cancer makes me want to scream until I’m pink in the face. What would I yell? Oh, here are a few jewels that come to mind: For starters, I’m an adult, not a fairy princess. I don’t want to join your pink sorority. I have a deadly disease, not a boo-boo you can cover up with a giant pink Band-aid. I don’t want a fucking pink day planner. What I need is a surgeon who will treat me like an intelligent person, a person who needs accurate, concise, no-bullshit information much more than she needs a linen closet overflowing with pink gewgaws.

And while I’m on my pink soapbox, I would add: Don’t use your pinkest, most upbeat voice to tell me that radiation will give me a “virtual breast lift” by tightening the skin around my breast or that reconstruction will give me the “breasts I’ve always wanted”—all expenses paid! And stop waving your pink wand, like I’m 8 instead of 38. Pink is cute. Pink is frilly. Pink is for little girls. But there is nothing cute or frilly about having your breasts carved off and your estrogen levels chemically decimated to the point that your libido is a distant memory and your genitals turn to sandpaper.

Do I want to shroud myself in black? No.

Am I a negative, angry person who wants to simmer about her disease, her brush with mortality, her troubles on Tamoxifen? No.

What I am is a smart, curious, thoughtful person who needs a little pink-free space to wrestle with her breast cancer demons. Because no amount of forced pink smiles, pink walks, and pink banners will undo what cancer has done to my body and my psyche. The hardest part is that I know there are other women out there who feel the same, but I can’t see them or hear them because we are all drowning in an ocean of pink.