My October Blues

October used to be one of my favorite months: the brilliant blue sky, the sharp crispness of the air, the beautiful turning of the leaves, and the fact that my birthday was just a few days before Halloween.  But 8 years ago, that all changed.

Back in October 2007, I had finally completed my chemotherapy.  I’d finished the uncomfortable tissue expansion sessions that were part of my reconstruction.  And the tissue expanders had finally been replaced with my silicone implants. But on that day, the fact was that I was still healing, completely exhausted, in the throes of so-called “chemo brain,” and once again hiding my bald head beneath a scarf to protect my scalp from the newly cold temperatures.  I’d just stepped into the grocery store and was dragging myself from aisle to aisle, trying to find something–anything–that might appeal to me, since everything I ate still tasted like it was thickly coated with metal.  And although I’d been wearing scarves or a wig while at work or out in public for many months, I was feeling more subconscious than usual–because everywhere I looked (and I do mean everywhere), all I could see was light pink, dark pink, muted pink, bold pink.   The yogurt, the soup cans, the magazines, the cash registers themselves, balloons (really, balloons?)—they were all covered with pink ribbons announcing “Breast Cancer Awareness Month.”   Of course, I’d noticed the ribbons during Octobers past, and I’d been donating to the American Cancer Society and Memorial Sloan-Kettering Cancer Center for many years. But on this day, I was seeing the ribbons with a completely different, somewhat embarrassed, and resentful perspective.  Perhaps selfishly, thanks to those Pink PINK Ribbons RIBBONS everywhere, I felt like there was an immense, gaudy, Coney Island-like flashing pink arrow in the air pointing directly at me.  And just minutes later, a stranger apparently did notice that strange ribbon-shaped arrow hovering over my head.  She walked right up to me in the produce aisle, leaned over, and whispered, “I like your scarf.  And I wanted to tell you that just about a year ago, I was exactly where you are today.  I’d just completed my treatment for breast cancer, my hair was just starting to grow back, and I felt like I’d been through hell and back. Was your diagnosis breast cancer, too? I wanted you to know that you’ll get through this and that you’re going to be just fine.”

She was a sweet person, and I did truly appreciate her kindness.  But I was also mortified.  I hated being so conspicuous–and quite honestly, I felt like a woman who was pregnant when complete strangers felt they had the right to touch her stomach. It was hard enough for me to go out in public every day exhausted, pale as a ghost, and without hair, hiding that fact beneath my scarves or my wig, so I essentially felt “outed,” albeit by a woman who had been through what I was experiencing and showing her support and kindness.  By the time I finally got out of the store, just the thought of a pink ribbon worsened the metal taste in my mouth.

AngryDog

Since that time, the pink ribbons in October have become more ubiquitous than the falling autumn leaves. They are at the heart of cause-related marketing, where it’s nearly impossible to get through a day in October without seeing a pink breast cancer awareness tee shirt, a pink fuel truck, pink blenders, pink guns (yes, really: guns!), pink beribboned bottled water containing BPA (a known cancer carcinogen), NFL players running onto the field in their pink gloves and socks, and on and on and on it goes.  But what many people still do not realize is that some of those companies that slap pink ribbons onto their products every October actually do not contribute to breast cancer research–or, in other cases, make contributions that are not tied to the purchase of the pink products in question.

That’s bad enough.  But in my humble opinion, there’s something much much worse–and that’s the steady stream of inaccurate, misleading, and downright false “facts” about breast cancer that appear everywhere you turn, “feel-good” story after feel-good story in every newspaper, magazine, and grocery store circular, and interviews touting how this or that celebrity “beat” breast cancer.  So this October, I’ve decided to do my best to debunk some of the myths that have become nearly as ubiquitous as those pink ribbons.

The first that immediately comes to mind is one of the most frustrating, because there are some in the medical community and a number of breast cancer organizations that continue to perpetuate this myth. You guessed it: “Mammography saves lives.” Or said another way, “mammography can only help women and couldn’t do any harm.” Believing these statements leads to a dark slippery slope paved with additional myths, falsehoods, and misunderstandings:

“She must not have gone for her annual mammograms: otherwise, she wouldn’t have been diagnosed with metastatic breast cancer.”

FALSE!

“After all, no one dies of breast cancer anymore.”

FALSE!

KomenAd with circle

Remember the 2011 ad above from Susan G. Komen–which has been described as the “most widely known, largest, and best-funded breast cancer organization in the United States”?  (The red circle cross-out is mine.)

The good news is that when this ad was released, Komen came under fire from scientific experts and knowledgeable patients and advocates due to its misleading statistics and its “blame the victim” message.  In fact, two professors from the Center for Medicine and the Media at The Dartmouth Institute for Health Policy and Clinical Practice, Lisa Schwartz and Steven Woloshin, published an essay in the British Medical Journal (BMJ) (2012;345:e5132) stating that Komen’s 2011 Breast Cancer Awareness Month campaign “overstates the benefit of mammography and ignores the harms altogether.  A growing and increasingly accepted body of evidence shows that although screening may reduce a woman’s chance of dying from breast cancer by a small amount, it also causes major harms, say the authors.  Yet Komen’s public advertising campaign gives women no sense that screening is a close call.  Instead it states that the key to surviving breast cancer is for women to get screened because ‘early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.’ This benefit of mammography looks so big that it is hard to imagine why any woman would forgo screening.  But the authors explain that comparing survival between screened and unscreened women is ‘hopelessly biased.’ For example, imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70. Five year survival for this group is 0%.  Now imagine the women were screened, given their diagnosis three years earlier, at age 64, but still die at age 70.  Five year survival is now 100%, even though no one lived a second longer. Overdiagnosis (the detection of cancers that will not kill or even cause symptoms during a patient’s lifetime) also distorts survival statistics because the numbers now include people who have a diagnosis of cancer but who, by definition, survive the cancer, the authors added.  If there were an Oscar for misleading statistics, using survival statistics to judge the benefit of screening would win a lifetime achievement award hands down, they wrote.”

Even more alarmingly, these authors conducted a survey where they “found that most US primary care doctors also mistakenly interpret improved survival as evidence that screening saves lives.  Mammography certainly sounds better when stated in terms of improving five year survival – from 23% to 98%, a difference of 75 percentage points. But in terms of its actual benefit, mammography can reduce the chance that a woman in her 50s will die from breast cancer over the next 10 years from 0.53% to 0.46%, a difference of 0.07 percentage points.  The Komen advertisement also ignores the harms of screening.  The authors noted that for every cancer detected by mammography, ‘around two to 10 women are overdiagnosed.’ These women cannot benefit from unnecessary chemotherapy, radiation, or surgery.  All they do experience is harm.”

AngryCrab1

The emphasis on the term “overdiagnosed” is mine:  because overselling of screening mammography has resulted in an enormous increase in the number of women who are treated for breast cancer–but most of whom would never have developed breast cancer if left untreated.  The fact is that for women of average risk, screening mammography has led to a dramatic increase in the diagnosis of Ductal Carcinoma in Situ (DCIS).  DCIS, which is an overgrowth of cells in the milk ducts, lacks the ability to spread, and more are beginning to argue that its description as “breast cancer stage 0” is a misnomer—because DCIS is not in fact cancer.  Rather, as breast surgeon and breast cancer oncology specialist, Dr. Laura Esserman, has described it, DCIS “is a risk factor for cancer. Many of these lesions have only a 5 percent chance of becoming cancer over 10 years.”   However, because there is not yet a way to accurately predict which patients are at most risk of progression to invasive disease, most cases of DCIS are treated aggressively, e.g., with breast-conserving surgery (lumpectomy), radiation, mastectomy, and/or in some cases, hormonal therapy. It’s been estimated that DCIS comprises up to 30 percent of “breast cancer” diagnoses. Yet for the majority with DCIS, the precancerous lesions will stay in place (i.e., “in situ”), will not become invasive, and therefore will never pose a life-threatening risk.  The result: overtreatment, where hundreds of thousands of women are undergoing aggressive cancer treatment and at risk for such treatment’s adverse and potentially late effects when they may not have needed such treatment. (Fortunately, ongoing research is taking place, including validation studies of an OncotypeDx for DCIS, with the goal of helping to identify patients who may need less aggressive therapy or no treatment other than “watchful waiting.”)

So the story of screening mammography for DCIS is not a success story.  Nor has it been a success story in detecting late-stage disease. As Dr. Esserman has stressed, if life-threatening breast cancers began as DCIS, the incidence of invasive breast cancers should have steeply declined with increasing detection rates. However, that has not occurred.

More Myths

However, cause marketing is not the only source of misleading or inaccurate breast cancer “facts.”  Breast cancer misinformation is often compounded or reinforced by celebrities who are breast cancer survivors. Remember Melissa Etheridge’s outrageous comments in AARP Magazine, when she and her buddy, Sheryl Crow, discussed how “They Beat Cancer” and provided “Lessons for All of Us”?  (Yes, I’m still furious.)  With just the headline, before the article even began, AARP’s magazine managed to perpetuate dangerous myths and to condescend to every one of their readers: women, men, those who have had or are currently receiving treatment for breast cancer, those who have lost loved ones to this terrible group of cancers, and those who will be impacted by breast cancer in the future.   Let’s start with the statement “beat cancer.”  It’s fortunate that both singers are doing so well and that their treatment has been effective for them to this point.  But tragically, approximately 25% of women with breast cancer have a recurrence, where the cancer has returned—and for women with estrogen-receptor positive (ER+) breast cancer, nearly 33 percent experience a recurrence.  Furthermore, over half of recurrences for ER+ breast cancer are detected more than 5 years following original treatment, in some cases decades later, as opposed to other breast cancer types that tend to recur within 5 years of the original diagnosis.  Research suggests that late relapse is most likely due to “tumor dormancy,” where there is a prolonged phase between cancer treatment and detected evidence of disease progression.  It’s thought that cancer cells that were able to escape the patient’s initial treatment are able to survive by hiding in a latent state for years or decades, ultimately coming out of dormancy and leading to incurable breast cancer metastases. So the important truth here is that we currently have no way of knowing who has “beat” breast cancer.  As Dr. Susan Love has explained, “Breast cancer can be cured.  In fact, we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured—until she dies at 95 of something else.  So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time.” Crow was reportedly diagnosed with stage I ER+ breast cancer.  Although Etheridge has disclosed that her cancer was stage II and that she has a mutated BRCA2 gene, I was not able to locate the hormone receptor or HER2 status of her breast cancer.  Though I sincerely hope that neither ever develops a recurrence, we simply cannot know whether either woman is “cured” of her breast cancer.

It was also infuriating to me when Etheridge, scientific expert that she is, said in the same interview: “This was my own doing, and I take responsibility.  When I got my body back in balance, my cancer disappeared.”  Excuse me? Breast cancer is NOBODY’S FAULT.  And no, her cancer didn’t “disappear” because she made healthy changes for her body. Sure, eating well and having a healthy lifestyle certainly is a smart choice for everyone.  But Etheridge no longer has any evidence of disease because she was treated for her cancer including surgery, chemotherapy, and radiation.

The Politics

And then there is Debbie Wasserman Schultz: since we know that if a politician is a breast cancer survivor, she’s an automatic expert on the science of breast cancer, right?  Schultz–like so many politicians before her–apparently has no use for inconvenient evidence.  When the U.S. Preventive Services Task Force (USPSTF)’s recently updated its guidelines for screening mammography based on scientific evidence, she loudly protested and politicized the issue.  In an interview with Marie-Claire last year, she was asked the following:

MC: “What do you make of the fact that so many health care organizations no longer advise young women to do breast self-exams?”

DWS: “To say that I don’t agree with recommendations that say women shouldn’t get mammograms at 40 or that self-exams aren’t necessary would be an understatement.  It is entirely appropriate and recommended to have a mammogram between 40 and 50.  If I didn’t do self-exams, I never would have found out about my BRCA2 mutation, which gave me a 40 to 85 percent chance of developing ovarian cancer by the time I was 50.  I mean, I was a ticking time bomb and I didn’t know it!  To me, those recommendations send a very strong message to younger women that they’re being written off—that they don’t matter.”

What Schultz didn’t say is that the U.S. Preventative Services Task Force recommendations stress the following: “The decision to start screening mammography in women prior to age 50 years should be an individual one.  Women who place a higher value on the potential benefit than the potential harms may choose to begin biennial screening between the ages of 40 and 49 years.”  Importantly, they also emphasize that “Women with a parent, sibling, or child with breast cancer may benefit more than average-risk women from beginning screening between the ages of 40 and 49 years.”

Schultz, joined by 61 other legislators, sent a letter to Health and Human Services Secretary Sylvia Burwell, where they asked that the department ignore the new draft guidance by the USPSTF—in other words, asking that the department ignore the evidence.  Schultz used her own story to make her case: “As a young survivor of breast cancer who was diagnosed at age 41, I am a living testament to the importance of breast cancer awareness in young women.  It is imperative that no one limits the insurance coverage of preventative options for young women, especially if they have an elevated risk.  While mammograms are not the only important part of preventative coverage, they play a vital role in detecting cancer in young women, in whom it is most deadly, and in raising breast health awareness.”

But did mammography actually “play a vital role” in detecting her cancer?  She has stated that she “had my first mammogram a few months before I found the lump” and that if the Task Force’s recommendation had been in place, she may not have had a mammogram and her own cancer would “not have been caught early.”   What’s more, she said, “We know that there are women that [sic] will die if this recommendation goes through.”  Yet here’s the thing: in a 2013 Glamour Magazine interview, she said that “My diagnosis was a couple of months after a clean mammogram. I had aggressive breast cancer, and it grew fast from the time I had my mammogram, or it was there and the mammogram missed it. Nothing is foolproof. You can’t make yourself crazy, but you have to be vigilant.”  So apparently, screening mammography did NOT detect her breast cancer.  Schultz’s own story does not support the case she has been trying to make so vociferously.

SharkComic3

Perpetuating the Myths

But something that I saw recently is probably the most upsetting of all.  On its Facebook page, BreastCancer.org shared responses from members of their Facebook community to the following question:

“It’s Breast Cancer Awareness Month.  Are there issues you feel are not getting enough attention?”

The responses concerning the topic of screening demonstrated the tremendous harm that results from the misinformation so freely distributed throughout October (and all year round). Here are just a few responses:

“Mammograms for 40 years upwards.”

 “Earlier mammograms!!!”

I began mammograms at 30 BC of questionable cysts and got Dx at age 49!  They should start mammos at age 30. Maybe have them every two years. Raising age to 50 is nuts.  I’ve had many friends Dx well before age 50.”

Earlier screening mammograms? How early? How young is too young: 40, 30, 20, 15? How many more women will be overdiagnosed and overtreated before the insanity stops?

But I do want to end my October rant on a high note.  The same BreastCancer.org blog also shared some responses concerning the critical topic of metastatic breast cancer–responses showing that there may be more and more folks who are seeing through all those pink ribbons to the truths about breast cancer:

“Stage IV Needs More!!!”

“More attention and funding to metastatic breast cancer, and less attention to ‘awareness.’  Even 3rd graders are aware!”

“Stage IV research.  Not enough of it.  Stage IV life expectancy.  Not enough of it…”

Bravo: Less attention to “awareness” and more to Stage IV and the critical need for metastatic breast cancer research funding.  So enough with the pink ribbon campaigns.  Ignore the celebrities who abuse the public platform they’ve been given to further spread misinformation.  And a big, firm wave good-bye to politicians who ignore inconvenient facts and use their power and influence to determine what’s best for us–since apparently we don’t know any better.

Incidentally, the nice woman who came up to me in the grocery store may or may not have been correct when she said, “I wanted you to know that you’ll get through this and that you’re going to be just fine.”  My breast cancer was ER+, so I’ll never know whether my breast cancer was cured–unless it recurs or I peacefully pass away of old age in my sleep.  The latter, please.

SharkComic2

A huge thank you to my sister, Ann-Dee, for these wonderful illustrations, which perfectly capture the sentiments I wanted to convey here.

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8 thoughts on “My October Blues

  1. So much of what you have written here, I have said to others as my education on the miseducation of most about breast cancer continues. What a complicated disease. I love that you’re an advocate and while I have wanted to put breast cancer behind me after active treatment, I feel pulled in the advocate direction. Thank you for the links as I research more about advocacy.

    • Patti, thank you so much for your comment. I’m thrilled that you’ve found this information helpful and that you’re feeling pulled toward advocacy. You’re absolutely right concerning the complexity of breast cancers, and women and men across the country would benefit from more folks such as yourself who understand this and who can help others to see through the myths. My hope is that some day, our advocacy will help the public to finally recognize the need to stop spending money on “more awareness” and instead on MUCH more research on metastatic breast cancer, i.e., the types of breast cancer that take over 40,000 beautiful lives across the U.S. every year. Thanks again, Patti!

  2. Brava, Deb. It’s so horribly complicated, isn’t it? That’s part of the problem. Breast cancer is not one disease, it’s several, of varying types, symptoms, and behaviors. Our current screening options are clearly inadequate. We need much more accurate screening, something way better than mammograms, be they 3D, digital, or what-have-you. And, yes, we need more answers for mets. It’s like we’ve missed either end of the spectrum of need here, and more pink ribbons achieve exactly nothing. xoxo, Kathi

    • You’re absolutely right, Kathi. So many folks are not aware of the deep complexities of breast cancers–the different molecular subtypes, the sheer number of mutations (and determining “driver” vs. “passenger” mutations), the fact that every single breast cancer is different, the development of drug resistance, and on and on and on. Yet the popular media, which truly has no business writing about complex medical topics, is always looking for the quick, simplistic, “snappy” headlines–and in this day of constant incoming noise, it seems that few are willing to look beyond or question the headlines–or don’t realize that they should be doing so. And when ill-informed, entitled, often narcissistic politicians and celebrities get involved, they (almost) always seem to worsen the problem, burying the truth in more levels of misinformation and pink-tinted garbage. We absolutely do need much more accurate, reliable screening methods; we need evidence-based screening and treatment decisions made by informed physicians in partnership with their patients–rather than by insurance companies and politicians; and we need to focus breast cancer research on the questions and finding the answers that truly matter to patients, i.e., preventing metastatic breast cancer, curing metastatic breast cancers, and enhancing quality of life. And as you’ve said so beautifully, what we most definitely do NOT need is more pink. Kathi, thank you so much for your always thoughtful, greatly appreciated comments. xoxo Deb

  3. It is very reassuring to read about someone else’s misgivings about “beating” breast ca. In January 2013, I was diagnosed Stage 2 ER positive breast ca. I’ve tried arimdidex and tamoxifen and made the decision to stop both meds in August 2015. I continued to feel like I was still undergoing cancer treatment (strong chemo, 64 greys radiation therapy, ungodly amount of steroids, Neulasta injections, brain fog, lack of energy preventing the participation in day to day activities). Enough was enough. I met with my oncologist and advised her of my decision to go off Tamoxifen and felt like myself again with more energy. I indicated that I was ready to do the survivor strut. Her response that I was still undergoing cancer treatment if I had not gone off Tamoxifen with the intent to follow the 5 years protocol. My oncologist felt my ER breast cancer necessitated continuing the Tamoxifen regardless of how I felt. To me, I feel quality of life should be considered. I know we all die, but why do I feel like I am living a death wish?

    • Karen, thank you so much for sharing your thoughts and your experiences here. I’m sorry that you’ve also been diagnosed with breast cancer and that you’ve been experiencing many of the adverse effects that can be associated with our treatments. After I’d completed my “active treatment” (surgery, reconstruction, chemotherapy, steroids, Aranesp, blood transfusions, Neulasta…), I finally felt ready to start participate in some support groups–and I found that at nearly every meeting, the overwhelming majority of the women there spoke about the extremely difficult, sometimes life-altering side effects that they’d been experiencing from Tamoxifen or the aromatase inhibitors (AIs). I remember several women who described disabling joint pain. Many also shared that they’d been affected by severe depression for the first time in their lives shortly after starting Tamoxifen or an AI. All stressed that they understood their current situation could well have contributed to their depression–but most also reported that after they switched to a different AI, their depression improved. Many discussed their great wish to come off the Tamoxifen or AI to improve their quality of life, but were afraid if they did so, and should they recur in the future, they worried that they’d find a way to blame themselves. A terrible, highly personal choice that no one cannot begin to understand unless they’ve experienced it themselves. Of those in my support group, some continued with their Tamoxifen or AI treatment for that reason, but some also, in discussion with their oncologists, decided to come off. And others were fortunate in that they didn’t experience such difficult symptoms. For a while, I was one of those. But after a few years of being on Tamoxifen, I began to find it nearly impossible to sleep. It did get to the point where it was greatly decreasing my quality of life, so I spoke with my oncologist, since I was struggling with the same question of whether to stop the Tamoxifen or to grit my teeth and continue with the Tamoxifen. Karen, he recommended that I try switching to a different medication that is similar to Tamoxifen, called Fareston (toremifene). Like Tamoxifen, it’s a selective estrogen receptor modulator, but its mode of action is a bit different, and Fareston and Tamoxifen have been found to be therapeutically equivalent treatments for both metastatic breast cancer and for adjuvant therapy for early-stage breast cancer. I’ve included a link below that provides information on a study evaluating Fareston vs. Tamoxifen in the adjuvant setting. In my case, I’ve been MUCH happier with the Fareston: I’m no longer affected by insomnia, and other side effects I’d been experiencing (including hot flashes) have also greatly improved. If you find the information concerning Fareston helpful, please consider speaking with your oncologist about this as a possible effective alternative instead of the Tamoxifen–and I’ll pray that if you do decide to try the Fareston, your experience is a much more positive one when compared to the Tamoxifen. Take care, Karen, and know that I’m sending you my very best. Deb

      http://www.ncbi.nlm.nih.gov/pubmed/20209619

      Cancer. 2010 May 15;116(10):2307-15. doi: 10.1002/cncr.24940.
      Excellent outcomes with adjuvant toremifene or tamoxifen in early stage breast cancer.
      Lewis JD1, Chagpar AB, Shaughnessy EA, Nurko J, McMasters K, Edwards MJ.

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