A Husband’s Thoughts on Cancer

Those of you who have read my blog know that my first cousin, Laura, was diagnosed with HER2+ breast cancer in 2012—and that just a year and a half later, she felt a lump in her neck, which led to the devastating news that she had metastatic recurrence to her lungs, liver, and multiple lymph nodes.  She immediately began treatment again, this time for metastatic breast cancer (MBC).

Fortunately, she responded incredibly well to her combined targeted HER2 treatment with Herceptin and a newly approved HER2 targeted agent, Perjeta, and was found to have no evidence of disease (“NED”) since October 2014.  But as she explained in her blog, in the spring of 2015: “I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on, I had to be very close to the screen.  In my former life, I would have chalked it up to [being] tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI.”  And it was then that she learned her cancer had metastasized to her brain, with 18 lesions that were too poorly differentiated for localized gamma knife.   She therefore underwent whole brain radiation and, later, following the development of more brain lesions, gamma knife procedures.   In March of this year, Laura wrote the following about her most recent scans:  “’My body has no visible cancer right now.  Yea!  My brain has five tiny lesions that aren’t a big enough deal right now to treat.  Yea…..? This is a ‘great report’ from both of my brilliant docs.  Grace is my interior screaming, ‘What Kind of Fuckery is This?*’ while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.”  (*As Laura explained, “It’s what Amy Winehouse sang so gorgeously in ‘Me and Mr. Jones.’  ‘WHAT KIND OF FUCKERY IS THIS?’  I love curses I’ve never heard before, especially when they fit a situation so well.”)

Also in March, Laura’s husband, Jon, wrote a deeply moving post on his Facebook page that brought me to tears.  In the days that followed, my thoughts kept returning to his words, and it struck me that far too many people have never heard such thoughts from the loved ones of women or men living with MBC.  I therefore contacted Jon to ask whether he would be willing for me to share his post on my blog, explaining that I had two reasons for my request.  First, there was no doubt that his words would deeply resonate with so many.  And second—and so importantly—his post could go far in educating others who have far too many misconceptions about MBC.  Jon graciously gave me his permission, and so, without further ado, I’m honored to share the following with you today.

Jon and Laura

Jon Graves and Laura Snyder

“My Thoughts on Cancer” 

“Every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC).  Laura has been living with metastatic cancer for just over 33 months, which happens to be the median life expectancy for someone with MBC.  This statistic could be a little skewed, since there are a couple of new [targeted] drugs (Herceptin and Perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer.  She is [also] on chemotherapy and will continue on chemo of one type or another for the rest of her life.

“Right now, Laura has five brain mets (tumors) she is just walking around with.  They are very small, so her radiation oncologist just wants to wait before doing a procedure.  But this is me telling facts and not feelings.

“Ever looming is death.  Metastatic cancer is the cancer that kills.  So death is the first thing that is always lurking.  Every three months, she has scans, and we see if there is cancer in the body or in the brain.  Her cancer likes to invade her brain.

“But beside the big thing (death) is the human trait of planning ahead.  Thinking of the future.  Our future is lived in three month scan cycles.  But at the same time, I think about what is happening in ten years when I’m in my early 60s.

“My birthday is next week.  I will turn 53.  My Dad died when he was 52.  I have been afraid of 52 for a long time.  Laura made it past 52, and it looks like I will,  too.  But it brings up lots of emotions–especially the long-lasting void left for my wife and kids, who never met my real Dad.

“What is it like living with metastatic cancer (from a caregiver/observer view)?  Day to day can be good, generally is good.  Dog walks and amazing dinners.  Laura is cooking more than ever before in our marriage, and the food is amazing.  But there is a knot in my stomach, a catch in my throat, when someone talks of retirement or the future.  I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser (?) or whatever the dating app of choice is.  Will I be looking for someone to retire with in 15 years, or will Laura be there by my side?  Like everything in life, I just don’t know, but my mind wanders to the uncertain future late at night or early in the morning.

“I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain.  There are interesting and potentially life-saving drugs out there in trials that could make all the difference in the near future.

“Am I a bad person for making jokes that she can’t remember something?  She does not have nearly the cognitive abilities that she had five years ago.  Brain radiation will do that, as well as years of chemotherapy.  Her eyesight changes every few months, and she needs new glasses lenses, but I taunt her for not being able to see …  I know, I suck and should be better, but I can’t help making jokes about what is hard.

“We are thinking and dreaming of building out on our Knappa land above Big Creek.  It is great to think about moving out there when I retire, but what does that really mean–am I with Lu or alone?

“If you have read this far, please do not worry about me.  I am the same ebullient, happy-go-lucky fellow you know.  At times, I think too much, just like my lovely wife.”

Thank you, Laura and Jon, for allowing me to share this post.  I recalled that in an interview for the blog “Voices of Metastatic Breast Cancer,” when Laura was asked to share her favorite poem or song, she responded by saying that The Beatles ‘Ob-la-di, Ob-la-da’ really resonated with her in this phase of her life, as did Lucille Clifton’s poem, ‘Blessing the Boats.’”  I’m therefore sharing the below as a way of expressing my gratitude to you both.

blessing the boats

BY LUCILLE CLIFTON

                                    (at St. Mary’s)

may the tide

that is entering even now

the lip of our understanding

carry you out

beyond the face of fear

may you kiss

the wind then turn from it

certain that it will

love your back     may you

open your eyes to water

water waving forever

and may you in your innocence

sail through this to that

Lucille Clifton, “blessing the boats” from Blessing the Boats: New and Selected Poems 1988-2000. Copyright © 2000 by Lucille Clifton. Reprinted by permission of BOA Editions, Ltd., http://www.boaeditions.org.

Source: Blessing the Boats: New and Selected Poems 1988-2000 (BOA Editions Ltd., 2000)

Ob-La-Di, Ob-La-Da

 

Ode to Jody

 

Jody1

This Wednesday, May 18th, so many of us experienced a tremendous loss.  Our beautiful friend, Jody Schoger, gained her wings.  There is so much to say about Jody, about her warmth, compassion, wisdom, eloquence, determination, and strength.  She was a tremendously talented writer and patient advocate who blazed a unique trail through social media, co-founding “Breast Cancer Social Media.”  Also known as #BCSM, it quickly became a global online community, providing powerful support, connecting thousands of people from around the world affected by breast cancer, and sharing critical information that was always grounded in and supported by medical evidence.

Jody was fiercely committed to #BCSM and those who formed this tremendously important community.  In fact, shortly after she learned that she had metastatic breast cancer, she wrote to me:

“This was a huge shock, but we are absorbing it, and I need to do some rearranging of activities, so I can treat this and still advocate.  It is as important as ever.”

And as her #BCSM co-founder, Alicia Staley, shared in a beautiful tribute to Jody, “When it came time to leave, she insisted on walking me to the door and down the driveway.  I knew this would be a long walk for her, but stubborn as she was, there was no stopping her.  She walked with me, one arm around mine, another hand on her cane … She squeezed my arm and pulled me in close. ‘Now listen, you know what needs to be done for #BCSM.  It’s up to you to take care of them now.’”  This powerfully shows so much about Jody: her resolve and inner strength, her poignant honesty, her innate ability to gently guide and teach us the most important life lessons–and the simple, but profound fact that she was always an advocate for others in her heart, throughout her soul, and with every breath.

Yet as I have tried to write this tribute today,  I’ve found that it is nearly impossible to adequately describe Jody with any words I might share.   Rather, it is her own words–such as her blog’s tag line, “Working for a better world, one word at a time”–through which we can remember the beauty, joy, knowledge, and compassion she brought to so many.  The following is from Jody’s blog, “Women with Cancer,” a place where I’ll be returning often, to again spend time with her in one of the few ways I still can:

Tuesday, March 24, 2015: “Stable Disease”:  “It’s one of those days.  I can’t stop smiling.  Spring has arrived after a long, grey winter here in south Texas.  It was dank, it was long, it was wet and cold … On my part, I’ve learned a lot about the seasons of metastatic disease in these past four short months … I’ll always have cancer, yet I have a team at MD Anderson that will go the distance with me.  Friends have stepped forward and clearly demonstrated their love, compassion, and courage.  Yes, some things could be better as far as my health news.  But being here and writing and chatting with you today is simply marvelous.  It just is.”

Jody2

Friday, April 26, 2013: “Cancer: Round Two”: “It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy.  This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer.  When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.”

Jody and Katie

On the same day that Jody posted the blog excerpted from above, she sent an email to several of us that began in her always honest, open, and eloquent manner: “I wanted you to hear this difficult news from me first instead of Twitter where the link below will be published sometime today.   When I went to MD Anderson two weeks ago for my annual survivorship clinic, metastatic breast cancer was discovered in lymph nodes in my neck and axilla.  I was so shocked, the only thing I could say to the radiologist who’d performed the FNA was, ‘really? are you kidding me?’ Of course she wasn’t kidding … We are adjusting.  I am adjusting, reorganizing, and sticking close to home.  Thank you for your friendship and the concern I know that will come my way.  You all help make my world go round.”

Jody, you have helped make the world go round for so many, and your words on your blog and #BCSM will continue to be a source of comfort for us.  We are heartbroken, but as you showed us, we are adjusting.  And we know that we must still advocate, now more than even before: as a wonderful and wise woman once said, “It is as important as ever.”

Rest in peace, dear Jody.

wings

 

Immunotherapy Part II: Understanding the Unique Spectrum of Adverse Events

In last week’s blog, entitled “Cancer Immunotherapy: a Patient’s Perspective,” I discussed the increasing excitement concerning new immunotherapies for patients with advanced and difficult-to-treat cancers, the need for caution in interpreting results while the data is still young, and the necessity for more mature data with much longer follow-up on an increased number of patients.
Part II of this blog series, now posted on The American Journal of Managed Care’s Contributors Page, continues on this important topic, focusing on why it is so critical for patients and their caregivers to understand the unique spectrum of adverse events that may be associated with these agents.  Unfortunately–and unsurprisingly–when reporting on the potential benefits of immunotherapy, some in the popular media have stated that there are “few to no side effects” associated with such therapies.  Though immunotherapies are typically not associated with the same adverse effects seen with chemotherapy regimens, “The Promise of Cancer Immunotherapy: Why Patient Education is Critical, Part II” outlines why the statement “few to no side effects” does not tell the entire story and may be extremely misleading for patients–and emphasizes the information that must be shared with patients before beginning any immunotherapy treatment.
tcells

 

Cancer Immunotherapy: a Patient Advocate’s Perspective

Over the last few years, months, and weeks, we have seen an increasing number of headlines pronouncing immunotherapy as the most exciting development in cancer treatment in recent memory.  Yet what is striking to many is that these discussions are not solely taking place throughout the popular media.  Rather, immunotherapy is more and more frequently becoming a major topic among oncologists, investigators, government agencies, academia, patient advocates, industry, and other stakeholders–where some express genuine excitement and others weigh in with cautious optimism concerning its potential promise.

immune_system

Yet despite the optimism, the field is still very much in its infancy, and the evidence is still emerging.  As a cancer research advocate, a key part of my role is focusing on the state of the evidence and the implications for patients, ensuring that scientific information is presented clearly and realistically, and raising the need for caution in increasing the hopes of patients when such data is still “in early days.”  In other words, because the encouraging results for some patients with previously resistant disease have been widely heralded in the popular media and since immunotherapy is in fact an increasingly active area of research, it is critical that cancer patients and their loved ones truly know what to expect from immunotherapy.

So when I was recently asked to contribute a new article for the American Journal of Managed Care and Evidence-Based Oncology  from the perspective of a patient and cancer research advocate, it was immediately clear that the following would be my next topic: “The Promise of Cancer Immunotherapy: Why Patient Education is Critical.”  So please click here to read this most recent contribution, and consider sharing it with other patients, advocates, caregivers, and healthcare providers concerning the current realities of cancer immunotherapy, the remaining questions, and why long-term follow-up and continued research is so critical with a much larger number of patients to obtain the mature data needed regarding safety, efficacy, potential adverse effects, durability of beneficial response, and impact on patients’ overall survival.

 

 

This is the Hard Part: the Other Side of Advocacy

I’m not sorry to say good-bye to 2015.  It was a cruel year during which we lost several beloved patient advocates, who were wrenched away from their families, their friends, and so many loved ones by the monstrous, hydra-headed beast, cancer.   It was the year during which I learned that my first cousin had been diagnosed with brain metastases due to her stage IV HER2+ breast cancer. It was the year when I began to fear going onto Facebook, since I’ve now learned heartbreaking news about dear friends there far too many times. And it was the year when I began to dread receiving any emails whose subject lines simply contained the name of a fellow advocate with cancer—because it almost always meant the same thing, more tragic news, the loss of yet another dear friend and remarkable advocate.

In years not so long ago, when I was asked to explain what it meant to be a cancer research advocate, I welcomed the question. After all, I was being asked about my passion, what in many ways had become my raison d’etre. I could pinpoint with precision the very week when I stepped out of my role as a cancer patient and into that of a research advocate. After much difficult, fascinating, intellectually inspiring work, I was now sitting at the table as a partner with researchers, clinicians, and fellow advocates to drive the critical research questions that truly mattered to cancer patients themselves. I was an engaged, vocal participant at national cancer conferences, sometimes watching history being made as new treatment breakthroughs were being presented—and sharing deep disappointment with the oncologists, scientists, and advocates in the audience when novel agents that were followed with excitement ultimately failed to live up to their promise. And I was meeting highly passionate, intelligent, driven people from all parts of the country and, often, other nations, who were fellow cancer survivors and committed advocates, forming immediate deep friendships. It’s very difficult to describe how meaningful such friendships are. They involve an instant recognition of a kindred soul–one who knows first-hand just what you’ve been through from all aspects, including physically, emotionally, mentally, socially, spiritually, when cancer so rudely knocks at your door. These are folks who truly “get it,” to whom you immediately and without hesitation find yourself opening your heart and confiding the most private thoughts and concerns in a way you never could, nor wished to do so with your loved ones, in your reflex to protect them from your darkest thoughts and fears. Such friendships are life-changing, they are life-long, and they are one of the indescribable gifts that can give even the most difficult lives meaning. And yet. When your lifelong friend’s life ends far too soon—and due to the very reason that brought your life paths together when they otherwise never would have crossed—what then?

It’s now been more than 8 years since I’ve stepped into the role of an advocate. And with each year comes an increasing wave of devastating news. The terrible truth is that this should not have been unexpected for we who are cancer survivors and research advocates. For those of us affected by breast cancer, for example, we know that HER2+ and triple negative/basal-like breast cancer subtypes are associated with early relapse risk. And we know that ER+ tumors are associated with persistent late relapse risk beyond 5 years, with up to one-third of patients recurring potentially decades after active treatment. Yet every single time I learn that one of my advocate sisters or brothers has developed metastatic disease, I’m blindsided. And worse, when I receive the terrible news that a friend with stage IV cancer has passed, I still somehow allow myself to be blindsided yet again. After all, for my friends with metastatic breast cancer, I knew that they did not have curable disease. Each time, we prayed that their treatments would lead to “no evidence of disease” (NED) and that this would last indefinitely–or until additional, much more effective treatments became available. And for some friends with stage IV disease, they have remained with NED for several years. Others have sought new clinical trials after their cancer became resistant to their current treatment and were able to maintain stable disease for quite some time, sometimes for years—and if they became resistant to that agent, some were able to enroll on another clinical trial. And yet. There have been more of those times when, after seeing my friends year after year at the same conferences or grant review sessions, they suddenly were not there. Or they were, yet it was impossible to deny how frail they appeared, how very sick they were, that their cancer had become more adept at resisting treatment. And perhaps the most soul-shattering times were those when, after speaking with a friend who seemed to be doing extraordinarily well with her new treatment, we learned very shortly thereafter that she was no longer with us. Each and every time, I’ve been blindsided by their deaths; I’ve been lost, angry, completely unaccepting of their loss from this world.

When undergoing my active cancer treatment for Hodgkin’s and, later, for breast cancer, I often worried about my oncologists and the oncology nurses who spent so much time with us, who supported us at the scariest times of our lives, who provided comfort and strength not just to we as patients but to our families as well. Both of my oncologists and their oncology nurses essentially became honorary family members, as they did for so many others whom they treated day in and day out, year after year. How were they able to form such powerful, caring relationships, yet learn how to cope with their patients’ deaths, the deaths of far far too many patients? Fortunately, in more recent years, there has been increasing discussion and recognition about the impact of such repeated losses and the need for improved resources and support for oncology professionals. As noted in Cancer Therapy Advisor, “Everyone who enters the field of oncology knows that many of their patients will die, but foreknowledge is not protection against the cumulative effects of loss.” I would argue that the same is true for cancer research patient advocates, particularly for those of us who have been actively engaged for several years and are experiencing what has been described as “cumulative grief”–the compounding emotional, physical, and spiritual responses to repeated exposures to profound loss. Just weeks ago, upon learning of another friend’s death, I shared with a fellow breast cancer survivor that I was still reeling from the terrible news (and the awful news before that, and the devastating news before that)—and her response was direct, simple, and wise: “Deb, this is the hard part.”

That it is—and during this past year, the sheer weight of it was sometimes more than I thought I could bear. Yet it’s during those times that I try to remind myself: in addition to being advocates for cancer research, we’re here to advocate for one another, and the support we provide to our fellow advocates during these devastating times is crucial. Oncologists and oncology nurses have appropriately stressed the need for greater institutional and professional support to help them cope with their grief due to their patients’ deaths. It could be extraordinarily helpful if we, too, as dedicated cancer patient advocates, similarly received such supportive and educational resources through cancer organizations and professional societies on topics such as cumulative grief, end-of-life care, pain management, and palliative care. After all, as we know so well, knowledge is power and often provides the tools and the strength to transform even the most difficult, painful problems and emotions, including grief, into truly positive outcomes.

In addition, every time we experience these terrible losses, it serves as a stark, powerful reminder of why we became advocates in the first place. As cancer patients and advocates, we are the ones who bring a critical sense of urgency to identifying the cancer research questions that truly matter, that will have the most impact, that will ultimately lead to more cures. By working to support one another and to transform our grief into remembrance and renewed commitment to our advocacy efforts, perhaps that is the most appropriate, necessary, and powerful way to honor all of those we have lost.

peaceful

“Grief starts to become indulgent, and it doesn’t serve anyone, and it’s painful. But if you transform it into remembrance, then you’re magnifying the person you lost and also giving something of that person to other people, so they can experience something of that person.”

~Patti Smith

A Postscript

It pains me to say that just 5 days after the new year, our cancer patient advocacy community has experienced yet another devastating loss.

Ellen Stovall was the Senior Health Policy Advisor at the National Coalition for Cancer Survivorship (NCCS) and a founding member of the Institute of Medicine (IOM)’s National Cancer Policy Board.  As I posted on Ellen’s wall on Facebook, she was a shining light to so many of us, and it is impossible to articulate the profound difference she has made for cancer survivors in this country. She spoke profoundly and powerfully on the need for further knowledge about the very serious late effects that can result from cancer treatment. Though I never had the honor of meeting Ellen face to face, I was and will always be inspired by her remarkable accomplishments in cancer survivorship advocacy.  As I’ve written about here in my blog, like Ellen, I was originally diagnosed with Hodgkin’s lymphoma, and I also went on to develop potentially life-threatening late effects of my treatment, including breast cancer and cardiac disease. It is absolutely devastating that Ellen passed away 2 days ago due to sudden cardiac complications secondary to her cancer treatments. Her passion and commitment touched so many lives, and her legacy will continue–a legacy of ensuring that cancer survivors are able to become true partners in their medical care and that shared decision-making with their medical team will help to prevent or mitigate such life-threatening late effects for many cancer patients. My first major focus as an advocate was the need for improved cancer treatments that minimized the development of serious acute and late effects while continuing to ensure optimal efficacy and positive patient outcomes. Going forward, my efforts in this critical area will be in tribute to Ellen, one of the true pioneers of the art and science of cancer survivorship.

Ellen Stovall

Back in 2002, Ellen shared the following thoughts when speaking during a National Cancer Institute (NCI)/American Cancer Society Survivorship Symposium in Washington, DC, called “Cancer Survivorship: Resilience Across the Lifespan.” Fourteen years later, her words resonate just as deeply:

“So, my closing thoughts to you are, as you leave this room today to go back to the very, very important work of writing grants, reviewing grants, and helping people in your communities day to day deal with their personal journeys of survivorship, please know that the cancer advocacy community, represented by scores of organizations that were founded by and for cancer survivors, stands ready and eager to tell you our stories of survivorship with the belief that while grateful for the blessings of survivorship, for the increasing length of days, months, and years added because of new and improved therapies for cancer, that this diagnosis is filled with many punishing and adverse consequences as well as joy for living each day.

“The physician Victor Sidel once said that statistics are people with their tears wiped away. That is the way NCCS views cancer survivors, and on behalf of all of us at NCCS, thank you for your attention and for all you do for cancer survivorship.”

Thank you, Ellen, for all you have done for so many.  Rest in peace.

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.

In Dedication to Donna

“Friends are the angels that lift us up when our wings have forgotten to fly.” 

                                                                                                                     ~Author unknown

What can you write about a beautiful person inside and out who has lost her life far too young …

Who loved her young son more than heaven and earth …

Who was a fiercely intelligent, driven, passionate advocate for others until the very end…

Who touched the lives of everyone she met, who was intellectually curious about everything around her, who was always the one who brought strength and laughter no matter how difficult the situation, and who brought so much joy to her family and her so many friends?

Donna Chaffe, my friend, sister, and fellow breast cancer advocate, passed away this Monday, October 13th at the young age of 48.  And the day she died was this year’s “Metastatic Breast Cancer Awareness Day,” the one day in the pink haze of October that is dedicated to debunking the “feel-good” myths and increasing understanding of the very dark realities for those with breast cancer.

As Dr. Susan Love explained in her October 13, 2011 blog piece, Metastatic Breast Cancer: Telling the Whole Story, “I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know [who] represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!”

Donna, who knew the other side of breast cancer far too well, was a passionate advocate focused on the need for meaningful, innovative, and impactful research for the prevention and cure of metastatic breast cancer.  And the day that Donna and I met for the first time, we were both new advocates who were attending the National Breast Cancer Coalition (NBCC)’s Project LEAD®, which is a premier advanced, and intense scientific training course on breast cancer.  We were both excited about becoming active educated breast cancer research advocates in order to gain a seat at the table with senior advocates, scientists, clinicians, and other stakeholders where research decisions are being made.

I’ve written about this before, but it bears repeating.  When I first walked into that room in Denver as Project LEAD was beginning, I was a painfully shy, relatively young woman who had never traveled on her own before, who was enervated by any new social situation, who was extremely uncomfortable being in a room full of strangers.  But just a few days later, at the end of Project LEAD, I left that same room having made lifetime friendships with several of the women who were my fellow LEAD Graduates—and I’m blessed that Donna was one of my new sisters.

Most who knew Donna would probably agree that she was anything but shy.  She was full of energy, so friendly, outgoing, passionate–and absolutely hilarious.  She had a million-dollar smile that lit up a room, and I have no doubt that I laughed more with Donna during those few days in Denver than I had in the entire year before.

After Project LEAD, Donna was interested in becoming a peer reviewer for the Department of Defense (DoD)’s Breast Cancer Research Program—and she would have done so if her need for more treatment had not prevented that.  Breast cancer is a cruel enemy, and each time Donna was right on the cusp of becoming a reviewer for the next peer review cycle, it seemed that it resisted, taking a new turn that required additional treatment and caused difficult side effects.  But Donna never seemed to become discouraged and continued advocating in so many ways.  One of the many things I’ll never forget about Donna is how she immediately jumped in to advocate for my first cousin, Laura, when she was diagnosed with metastatic breast cancer.  As I wrote in an earlier blog post, the upsetting irony was that I received the news about my cousin while sitting in a session on the advances in breast cancer treatment in the last 50 years.  Surrounded by hundreds of others during this session of the American Society of Clinical Oncology (ASCO)’s Annual Meeting, as tears were rolling down my face, I immediately sent messages to dear friends and advocates with metastatic breast cancer themselves, asking if they could provide my cousin with support.  This of course included Donna.  In my note to her, I told her that I had a huge favor to ask:  I explained that my cousin was “blind-sided and isn’t yet able to talk on the phone, but when I asked if she would be interested in corresponding with some wonderful advocates and dear friends of mine who are living with metastatic HER2+ breast cancer, she immediately said yes.  I know that it’s been a very tough time recently, so if you’re just not up for this, I completely 100% understand.  But if you are able to, I would forever be grateful because I can’t imagine anything that could be more helpful to my wonderful cousin than corresponding with you, my dear friend and wonderful advocate.  With love and gratitude, Deb.”

And of course, Donna immediately responded:

“I am so sorry, Deb.  Cancer really SUCKS!!!  I will absolutely!!! contact her.  This round with me is so far my scariest.  I know the feeling of being told ‘it’s back’ and I wish no one ever had to hear it.  Luv ya, Deb, hang in there sweetie.”

This took place just months ago in late May.  Even as she was having such a difficult, frightening time herself, she continued to advocate passionately for others—truly amazing, so truly Donna.  Just one look at her Facebook page shows her enduring spirit and strength, such as the quotes that she loved to post–which always inspired all of us who read them.  For example, this August, she posted the following:

Life

And in mid-September, she shared this:

Strength

In late September, though she was feeling very tired and having difficulty with her new medications, she shared with her friends that she had “finally taught ‘The Boy’ to make chili!” and that she was recording recipes “for Erik for someday, including old family secrets. ;)”

And on October 3rd, Donna typed her last posting on Facebook, as always advocating for others:

“Please remember that we are entering PinkTober.  However, nothing ‘pink’ cures cancer, especially pink lightbulbs.  Ensure that if you buy something pink for ‘awareness’ that the proceeds are going to research into or prevention of metastatic cancer!  Breast cancer has to spread to kill.  We’re all becoming ‘aware.’ Now let’s put that awareness to use through research into causes and prevention.  Make chemical companies stand up and tell us why they are still adding carcinogens to our food and environment!  METAvivors unite! Some of us are still waiting for a miracle!!!”

Ever hopeful, ever strong–The fact that such a miracle did not come in time for Donna breaks my heart.

 

Sweet Donna

 

 

Donna and Erik at the One-Eyed Pig

Donna with her beloved son, Erik, at the “One-Eyed Pig BBQ” during a visit with us in Newtown, Connecticut in March 2013

 

Donna

 

In Donna’s obituary, the family asks that in lieu of flowers, memorials may be directed to the Iowa Breast Cancer Action Foundation in Donna’s memory.