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

 

A Fascinating Discussion: Bringing Expert Clinical Interpretation to Complex Tumor Cell Genomics

As a cancer survivor and an active advocate, I typically attend several cancer research symposia, conferences, and workshops every year.  But one of my favorite meetings is always the American Society of Clinical Oncology (ASCO)’s Annual Meeting, since it brings together tens of thousands of oncology clinicians, researchers, advocates, and other oncology professionals from around the world, where attendees learn from leading-edge scientific and educational sessions, clinical science symposia, oral abstracts, poster discussions, and plenary sessions.

During this year’s Annual ASCO Meeting in  Chicago, I decided to attend a half-day “pre-meeting session” on a topic that is particularly timely for every cancer patient, researcher, oncology clinician, advocate, and all other stakeholders involved in and impacted by our current genomic revolution in cancer.  Called Genetics and Genomics for the Practicing Clinician, the session included several expert panelists whom discussed cancer genetics and tumor genomics specifically for clinicians who work directly with cancer patients.  While discussing tumor (somatic) and inherited (germline) mutations and the tools and tests available to oncology clinicians, the panelists used case-based presentations and a multidisciplinary tumor board format to highlight crucial clinical considerations and to connect the panels’ content to real-world scenarios to help ensure that participants may apply what they learned to their daily clinical practice for the benefit of their cancer patients and family members.

genomics

This pre-meeting session was absolutely worth the price of my entire trip to ASCO this year.  Yet what I remember most is actually a question that was posed by a gentleman in the audience toward the end of the session.  As he directed his question to all the panelists, he made the following provocative statement: “I would argue that evidence-based medicine is incompatible with precision medicine and, as currently practiced, is not effective for cancer care.”  If you have read my blog in the past, you know that its tag line is “It’s all about the evidence,” so it may be of no surprise to you that I was intrigued by the gentleman’s statement.  At the session’s close, I introduced myself to him, explained my role as a cancer research advocate and blogger, and asked whether he would be willing to be interviewed concerning his perspective on precision medicine versus evidence-based medicine and, as it quickly emerged, his role as a classically trained human geneticist and molecular pathologist.  To my pleasure, he readily agreed.  For those of you who are cancer survivors, advocates, oncology clinicians, and any other stakeholder type affected by cancer (essentially everyone), I have no doubt that you’ll find this discussion fascinating, as it essentially serves as a primer for those interested in the genomic interpretation of tumor and inherited mutations in cancer and the many considerations and implications regarding such interpretation.

Without further ado, I’d like to introduce you to Gabriel Bien-Willner, MD, PhD, FCAP.

dr-gabriel-bien-willner

 

Board certified in Anatomic Pathology and Molecular Genetic Pathology, Gabe has deep expertise in next-generation sequencing (NGS) and a long history of providing critical insight into the molecular basis of disease in cancer patients.  You can click here to read our interview, published by the American Journal of Managed Care on my AJMC contributor’s page.  Or you can also read our complete interview here as a PDF by simply clicking on the link below:

Interview-with-Dr-Gabriel-Bien-Willner

I’d also like to take this opportunity to again thank Gabe for our truly fascinating and informative discussion and for his crucial ongoing efforts on behalf of all of us who have been, are, or will some day be affected by cancer personally.

 

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

 

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.”

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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.

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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.

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

Doth the Lady Protest Too Much? The Bruce and Caitlyn “Jenner-ization” of the Nation

This blog posting has a bit of a different focus than my blogs typically do.  But I have a rule: if something causes me to throw back my head in frustration or to start talking to my computer screen or TV, that means I need to write about it—if only to work out my irritation, to reach some type of catharsis if I’m fortunate, or to come to a conclusion that may even have a pearl of wisdom buried within.  So I sincerely apologize if any of my wonderful readers takes offense to anything I’m about to say—but please do stick with me to the end if you can.

So here it goes.  If I see one more article about Bruce/Caitlyn Jenner’s “rocking a gorgeous white Versace gown,” taking “a walk on the wild side when she stepped out” in a leopard-patterned wrap dress in New York City, or “conquering her fear of swim suits,” I’m going to start screaming, and I may not stop.  But as you’ll see shortly, my rant here is not so much about Caitlyn, but rather about what I’m calling today’s “Jenner-ization” of America.

At the age of 12, with the rest of the country, I watched in admiration when Jenner set the world record in the decathlon and received the gold medal during the 1976 Montreal Summer Olympics.  And his win was certainly exciting in the moment.  But I didn’t quite understand why so many seemed to worship him so–and for so long.  After all, having received his gold, he retired immediately after taking his victory lap around Olympic stadium.  Even he has joked that “Nobody has milked one performance better than me—and I’m damned proud of it.”  And years later, after moving to Newtown, CT, I learned some not-so-admirable facts about Jenner, making it even more difficult to consider myself a fan of the former athlete.

A bit of background first, and then on to why Jenner has not been Newtown’s favorite son for some time now.  The fact is that Jenner lived right here in Newtown, and this is where he spent his last 2 years of high school.  In addition to competing in track at Newtown High, Jenner also played on the football and basketball teams, and he was voted Most Valuable Player of Newtown’s track squad.  He attended his senior prom with the young lady who became the wife of Newtown’s former first selectman.  And a few months after winning the gold medal in Montreal, Jenner returned to Newtown to attend a ceremony at Newtown High, during which they christened “Bruce Jenner Stadium.”  Just a few months later, tragedy struck the Jenner family:  his younger brother, who was just 18 years old, was killed in a car accident in Canton, CT while driving Jenner’s Porsche, which had been a gift to celebrate the Olympian’s success.  Though some speculate that his brother’s tragic death may be at least part of the reason that Jenner appears to have kept his distance from Newtown after that time, his name remained on the Newtown High School stadium for nearly 25 years.

And here’s where many Newtownians’ opinions of Jenner changed.  Former Newtown High School principal, William Manfredonia, told the Danbury New-Times that in 1997, school officials repeatedly tried to contact Jenner–whom at that time was living a charmed life as an actor, announcer, and motivational speaker–asking “for both financial and moral support” for a $400,000 renovation to the stadium.  Manfredonia said that “I wrote to [Jenner] twice to see if he could help, and I even called, but I never even got the courtesy of a reply letter.”  Michael Kelley, who was then the president of Newtown High School’s Blue and Gold Booster Club, also made repeated calls to Jenner while working with the club to help raise money for the new stadium.  “I never spoke to him personally, but I called his office and home numerous times,” Kelley told The News-Times. “His wife told me he was involved in other commitments and was not able to help us.”

At that time, I was a relatively new resident of Newtown, and my husband had already been living here for many years.  We were both enamored and protective of our sweet home town.  Needless to say, upon learning that Jenner did not even have the common courtesy to pick up the phone to return a call, let alone contribute to the stadium that bore his name, we were outraged at first and then simply disgusted.  Apparently, he simply was not interested in contributing to the warm, sleepy town where he honed his athletic skills.  Nor did he appear to have any inclination to help with a renovation to the “Bruce Jenner Stadium,” so that new generations of young men and women could develop their own athletic skills and perhaps go on to reach some semblance of the fame, fortune, and success that he had achieved.  Of course, it was completely within his right to choose to spend and not to spend his fortune in any manner that he wished.  But the result was that many of us who love Newtown lost a great deal of respect for him, the man who was Bruce Jenner at that time.

So that was that.  In October of 2001, the school board unanimously approved a name change for the stadium, calling it the “Blue and Gold Sports Stadium,” and they also renamed the athletic field behind Newtown High School as the “Harold S. DeGroat and Ann Anderson Sports Complex.”  Speaking to The News-Times, long-time Newtown resident Joan Crick said that “the stadium never should have been named after Jenner; it should have been given the name of Harry DeGroat, a long-time high school sports coach and physical education teacher, who died nearly 40 years ago. ‘He did so much for the town and is remembered by so many for his work and achievements,’” she stressed.  Kelley somewhat agreed: “I think we made the right decision in choosing his [Jenner’s] name for the stadium at the time, but over the years there hasn’t been a connection between Mr. Jenner and Newtown.”  The high school stadium, which is still known as the Blue and Gold Sports Stadium, contains a plaque listing the names of the many people who contributed toward the stadium’s improvements.  One former Newtown resident’s name is notably lacking.

Fast-forward to the very different world in which we live today.  So now you know why I have not considered myself a fan of Jenner for some time.  I just happen to think that not deigning to take a phone call from an official of your former home town—a town that honored you and celebrated your accomplishment by putting your very name on their stadium–was simply a rotten, thoughtless thing to do.  But as hinted earlier, that’s not why I’m writing this blog: what prompted me to do so is my concern for what’s been happening to our beloved country.

Before you start shaking your head, thinking that I’m a transgender-phobe (is that a word yet?), that is absolutely not the case.  If Bruce was miserable being Bruce and is truly happy now being Cait, I’m genuinely happy for her.  There is far too much suffering and pain in this world, and it’s always a wonderful thing when people are able to make changes that result in their leading much happier lives.  Also, I truly hope that by sharing her story, Cait is able to provide comfort and hope for those who are currently struggling with gender identity–and perhaps help to prevent some of the terrible experiences that impact so many transgender youth, such as family rejection, harassment, discrimination, violence, and other severe stressors that may contribute to the high suicide attempt rate among transgender people.

But sadly, with that said, it certainly appears to some of us that this is just as much—or perhaps much more–about Bruce doing what he wanted to do and making a pretty penny than it is about a strong sense of altruism and genuine concern for others.  Rather, for many, this seems more like another episode (literally) in our country’s current sensationalized reality TV show culture.

When Diane Sawyer asked Jenner (who was not yet going by Caitlyn) about whether this was a publicity stunt for the “Keeping Up with the Kardashians” show as many in the public were convinced, he rolled his eyes, laughed,  and sarcastically said the following:

Jenner: “Ohhh noooo, we would never do that, Diane! Are you telling me that I’m going to go through a complete gender change, okay, and go through everything you need to do [for] that for the show?  Sorry, Diane, it ain’t happening, okay? Yeah, we’re doing this for publicity … yeah, right.  Oh my God, Diane, do you have any idea what I’ve been going through all my life, and they’re gonna say that I’m doing this as publicity for a show?  Oh my God.  There are lots of shows out there.”

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Sawyer: “Yes, but there’s a shameless selling of everything these days.”

Jenner (now leaning forward and pointing at Sawyer): “And I get that, but what I’m doing is going to do some good.  We’re going to change the world.  I really firmly believe that we’re going to make a difference in the world with what we’re doing.  And if the whole Kardashian show and reality television gave me that foothold into that world—to be able to go out there and really do something good, I’m all for it. I got no problem with that.  Understand?”

“Understand?” My goodness!  It would be difficult not to regard Jenner’s tone and body language as sarcastic, didactic, and just downright rude.  And it was interesting to me that he kept using the word “we.” Wouldn’t one who was genuine about what he was saying use the word “I”?  Doesn’t his use of the universal “we” seem a bit contrived and suggest that he was referring not so much to his family members, but rather to the “cast members” of the Kardashian television show?  Perhaps the lady doth protest too much?

Yes, in my humble opinion, she “doth.”  Over the last several weeks, every single time I’ve gone online to conduct a search on Yahoo, there were not one, not two, but several stories about Caitlyn.  It was the day when I saw six, yes, SIX of these stories listed one after the other that I’d had enough.  And what did these “news” stories cover?  Let’s see: where Jenner went to lunch; how “stunning!” she looked while wearing “a tight black dress”; how stylists everywhere are finding “her classic and timeless hair and makeup flawless”; and the fact that she was excited about @Caitlyn_Jenner stealing the “Twitter crown” from @BarackObama by receiving 1 million followers the most quickly (where Caitlyn’s reaction was a squealing “Let’s go for the record! I love records!”).  Good grief.  Doesn’t this non-stop, frivolous, “glam” coverage about hair, nails, make-up, and social media highly suggest that much of this is about furthering celebrity and piling up those pennies?  And how about the fact that Jenner called a “family meeting” to break the news about his transgender plans to Kim, Khloe, Kylie, and Kendall Kardashian–during which E! cameras were rolling to capture the moment for an upcoming episode of “Keeping Up with the Kardashians”? What was that you said about publicity?  “Ohhh noooo, we would never do that, Diane!”

But for many, perhaps worse yet was when the media, Hollywood, and many others started throwing around the word “Hero” to describe Jenner’s transgender transition.  The icing on the cake was this quote from Kanye West, the husband of Kim Kardashian, when speaking to Jenner about her transition: “I think this is one of the strongest things that have [sic] happened in our existence as human beings, that are [sic] so controlled by perception.  You couldn’t have been up against more.”  Besides being barely understandable, really?  In my humble opinion, it’s difficult to reconcile “hero” as an appropriate term here—and I’m certainly not the only one who feels this way.  Just one example is former Virginia Beach Navy SEAL, Kristin Beck, who has not minced words concerning the manner in which Jenner is revealing her transgender transition.  In an interview with NewsChannel 3, Northeast NC, posted on May 13 this year, Beck bluntly stated, “He’s no hero.  I’m seeing too much of that money-grubbing reality show crap.”  Two years after retiring from the Navy, Beck revealed her transgender transition in a 2013 interview with CNN’s Anderson Cooper.  Beck strongly feels that Jenner’s approach to spacing out bits and pieces of information is less than helpful to the LGBT community.  “He’s keeping everything secret and parsing out information to fish out another 17 million viewers to make another million bucks.  It’s shameful, and you’re not a hero if all you’re doing is trying to make money.  You can’t be an example if all you are is just that reality show machine.”  Beck has written a book on her transgender journey and created a documentary called “Lady Valor.”  She explained that “I took the road where I made a documentary, did everything real quick, and just said, ‘Hey, here it is; here’s the information if you want to know about it.’  And now I’m going to universities and speaking for free at colleges and universities all around the country.  I’m barely breaking even, but I’m trying to show people who we are as normal folks, as something you can look and say, ‘Okay, I can understand it.’”

Beck, who is running for Congress in Maryland, emphasized that “There are kids, transgender LGBT kids who are killing themselves every day because they have no hero to look up to.  They see no future.  They feel isolated, and this could have been a really good example of what you can do and could have saved some lives.  But instead, you’re going to make a few bucks.  Disappointing.”

And concerning Kanye West’s statement that Jenner “couldn’t have been up against more”?  It is terribly sad that Jenner was unhappy for so long.  But Jenner became a celebrity many moons ago, had more opportunities than most in this life, and was immediately  buoyed and supported by other celebrities when he revealed that he was now Caitlyn.  Just to name a few examples, singer Demi Lovato dedicated a song to “American Hero, Bruce Jenner.”  Celebrity after celebrity tweeted their support to Jenner after her Vanity Fair cover, Culture Club’s audience gave her a standing ovation, and she is now surrounded by dedicated hairstylists and assistants to ensure every hair is in place and every outfit is “stunning.”  So Jenner “couldn’t have been up against more?”  In all seriousness, isn’t it time to stop the sensationalizing, the rubber-necking, the lowest-common-denominator impact of reality shows on our true reality?  The popular media has played a disgraceful role in this, with the result being more and more people who are “famous for being famous”—the Kardashian sisters, Paris Hilton, Nicole Richie, and on and on it goes.  Instead, imagine what a better world this could be if the media paid much more attention to the TRUE heroes all around us–many of whom in reality “couldn’t have been up against more”?  For example, wouldn’t you like to learn more about the following remarkable people?

Unsung Heroes in Our Midst

  • Do you recognize the names Ali Viator Martin and Jena Legnon Meaux? I did not hear a single news story about them and only learned of their bravery due to my brother-in-law’s discussing what had happened to them.  The two teachers were recently watching a movie in Lafayette, Louisiana when a gunman opened fire in their crowded theater, killing two people and injuring nine others, including Martin and Meaux, who were both shot in the leg.  One of these brave teachers immediately threw herself on top of her friend when the shooting started to protect her from the ongoing gunfire.  The other managed to drag herself to a fire alarm and pulled it to alert everyone in the building of the danger.  The overwhelming majority of the news coverage focused on … (you guessed it) … the motivations of the killer, who shall remain nameless here, rather than on these two brave women who undoubtedly saved many lives.

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  • Have you heard the name Kimberly Koss? She is a biomedical scientist, mother, and grandmother who delayed her treatment for a particularly aggressive type of breast cancer (known as triple negative breast cancer) to donate her tumor cells for research.  Speaking to Yahoo! Health, Dr. Koss explained that “This will be tremendously helpful in figuring out what causes this type of cancer and how to treat it…Every day, that gives me hope.”  Her friend and colleague, Dr. Keith Jones, is heading the research team at Loyola University Chicago Stritch School of Medicine, where they are using Koss’s tumor cells in an effort to create an immortal cell line.  Crucial for cancer research, immortalized cell lines are a population of cells that would normally not proliferate indefinitely yet, due to mutation, are able to evade the normal loss of the ability to grow and divide and therefore can continually proliferate.  Such laboratory-grown human cells, which may be cultured in mice, are critical for testing theories about the underlying causes of and treatments for cancers for translation into clinical advances.  Koss’s cancer was highly invasive, with the cancer cells’ undergoing cell division rapidly, making them good candidates to successfully proliferate in cell cultures.  However, chemotherapy would have damaged the tumor cells, making them less likely to survive in cell culture.  For triple negative breast cancer, many basic questions remain, and though there are some triple negative cell lines available for research, these tend to be from patients who had received chemotherapy prior to removal of the tumor.  In addition, as Dr. Jones told Medscape Medical News, Koss’s cells contain mutations not seen in the other cell lines.  “This will allow us to confirm that the cell lines used for study reflect the actual tumor tissue the way it was in the body, before it was extracted.  This is an opportunity we did not have before.”

Due to Koss’s decision to donate her tumor cells to research, she started to receive her chemotherapy after her mastectomy rather than before surgery.  Her chemotherapy therefore was started more than two months later than her doctors had recommended.  (For triple negative breast cancer, presurgical [neoadjuvant] treatment is often recommended in an effort to shrink the tumors and improve patient prognosis.)  Dr. Jones confirmed that some of Dr. Koss’s tumor cells have been growing in culture for about six months, but explained that another six months or so are required to determine whether they have successfully established an immortalized triple negative breast cancer cell line.  Though this is extremely encouraging news, there is also upsetting news: Dr. Koss’s breast cancer has now metastasized to her chest wall and lungs.  She also has developed cardiotoxicity secondary to her treatment, including early-stage cardiomyopathy and heart failure.  In speaking of his friend, Dr. Jones noted that, “It’s always a little scary to hear a friend say they were taking a chance on something that could cost their life or health.  I don’t know if, in the same situation, I could do the same.  It’s very brave.”  He also emphasized, “Part of her legacy will be what this does for other women.”  Now THIS is an American hero.

Dr. Kimberly Koss

Dr. Kimberly Koss. Loyola University

  • Did you know that more and more Americans, many of whom are veterans of the Iraq War, are volunteering on their own and creating several emerging groups to fight alongside local Kurdish Peshmerga forces and Christian militias against the terrorist group ISIS in Iraq and Syria?
  • What about the cancer researchers who are devoting their hearts and souls to developing life-saving treatments, while quietly struggling to keep their labs and their critical research afloat as available grant funding continues to disappear? Heroes in my book.
  • And those patients with cancer and other life-limiting or terminal illnesses who participate in clinical trials, understanding that there may be little or no direct therapeutic benefit for themselves and a very real possibility of significant harms, yet who do so for the hope of future patients? We all owe them a tremendous debt of gratitude: true heroes.
  • What about the young spokesman for Shriners Hospitals, the adorable little boy with the huge heart with whom so many of us have fallen in love? In his role as a Patient Ambassador, 12-year-old Alec Cabacungan has brought Shriners Hospitals to the attention of countless folks who before were unaware of the critical orthopedic, spinal cord injury, burn, and other specialty care they have provided to over a million children regardless of families’ ability to pay.  Cabacungan has been diagnosed with osteogenesis imperfecta, a genetic disorder characterized by bone fragility, and he has been affected by more than 50 bone fractures in his young life.  Shriners Hospitals’ “What is Love?” campaign has brought Alec’s radiant smile into millions of living rooms across the country, with the goal of bringing further charitable donations to help support Shriners’ ongoing critical work.  Alec, all of the other Patient Ambassadors, their families, the clinical staff and researchers at Shriners: heroes.  All of them.

alec

alec shriners

  • How about the millions of folks across our country who serve as caregivers for family members—for their children, spouses, adult parents, or siblings–with terminal or life-limiting diseases, including cancer, Alzheimer’s disease, and other dementias? Being a primary family caregiver can be one of the most emotional experiences one may have: it’s often physically, psychologically, and financially draining, stressful, frustrating, upsetting, and it’s never easy.  Yet for so many families, it can also be deeply rewarding and joyful.  As Edward Albert said so eloquently, “The simple act of caring is heroic.”
  • And though I could go on and on, I cannot conclude here without including the volunteer firemen in our communities, often our friends and neighbors, who run toward burning homes, buildings, World Trade Center towers, rather than running away like most of us, risking their own lives to save ours. Our American Heroes.

No, winning an Olympic gold medal, becoming a reality television star, and undergoing a transgender transition in front of the rolling TV cameras do not a hero make.  But today, as I was again trying to ignore the deluge of stories about Jenner’s gowns, swim suits, and latest trips on the town, I saw a short article for the very first time that specifically described what they called Jenner’s transgender activism and her concern over the high suicide rates seen in the transgender community.  Is it possible that over the rush of applause and the flashing cameras, Jenner has begun to hear the words of folks like Beck and to recognize that it’s not all about glitz, glam, celebrity, and cash?   Perhaps she has started to recognize her privileged status and what true struggle is like?  Might she start to worry less about the dress and direct the full focus and determination she had shown so famously as an Olympian to help the next generation of transgender youths feel less isolated and more hopeful?  Dare we hope that she, the media, and so many in our reality show culture will finally begin to recognize that it’s not what transpires in front of the cameras and what’s seen in the public view, but rather, as John Wooden famously said, that “The true test of a man’s character is what he does when no one is watching”?  We shall see.

On NOT Looking to Melissa Etheridge, Sheryl Crow, and the AARP for Life’s Guidance

I wasn’t going to write about this until I calmed down a bit and had a more rationale, less irate perspective.  But it’s been a few weeks now, I’m still angry … and I found an absolutely perfect quote from masterful songwriter and poet Bob Dylan that I couldn’t let go to waste.  So here it goes …

“It’s not a good idea and it’s bad luck to look for life’s guidance to popular entertainers.”

~Bob Dylan                                                                                                                                               

Bob Dylan

I truly wish the AARP (American Association of Retired Persons) had listened to this very sage advice.  When I came across the recent article in AARP The Magazine that began with the title, “Sheryl Crow and Melissa Etheridge Beat Cancer and Heartbreak,” the warning bells went off immediately in my head.  And then I read the next line: “The music legends teach us a thing or two about living with joy.”  My vision went red.

In just 2 lines, 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 wonderful that both of the 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 their original treatment, including after decades, 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 her type of 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.

And this brings me to the second line and the accompanying image, partially titled “Lessons for All of Us.”  Seriously? From two people who happen to have the stage because they’re famous singers?  As you’ll see below  (and I apologize, since I suspect many of you are just as weary of seeing this as I am), the image is accompanied by “words of wisdom” from both of the singers.  I have to say that Crow’s comments were comme ci, comme ça.  I do wish that she’d used the passive rather than the active voice when discussing screening mammograms.  In other words, rather than saying “I recommend …” it would have been much more appropriate to say something along the lines of this: “It’s recommended that women at average risk for breast cancer receive regular screening mammograms beginning at either 40 or 50 years of age based on their health team’s guidance and their personal preference.  And women at high risk may be advised to begin receiving regular mammograms at age 40 years or younger.”  I recognize that this is not nearly as “pithy” as what Crow did say–and as a writer, I’m typically not a fan of the passive voice, but this is one of those examples where it’s truly appropriate.  This may have been an opportunity to emphasize what the evidence has found and to contribute to the ongoing conversation by noting the current disagreement in screening mammography recommendations between the U.S. Preventative Services Task Force and the American Cancer Society–IMHO, an opportunity that was lost.  But for the most part, Crow’s comments were relatively thoughtful, whereas those of her friend, Etheridge, were, quite frankly, appalling, condescending, and downright dangerous.

Let’s start with the very first quote in the image from Etheridge: “Take Charge: This was of my own doing, and I take responsibility. When I got my body back into balance, the cancer disappeared.”  But here’s the thing: Breast cancer is nobody’s fault.  And her cancer didn’t “disappear” because she made healthy changes for her body:  rather, there is no longer any evidence of disease because she received treatment for her cancer.

its_all_my_fault3

And you don’t have to look far to find similar statements she’s made in the past.  In an interview with More Magazine, entitled “Melissa Etheridge’s battle with breast cancer,” (why always with the war metaphor?), she was asked what she is doing differently now in terms of her emotional and physical health.  Her response: “I have a very strong belief that this cure that we’re looking for is inside us.  The cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better.”

Okay, let me see whether I’ve gotten this straight.  Cancer as “just a symptom”? because we’ve allowed our bodies to become “out of balance”?  Has Etheridge ever heard of “blaming the victim?”  I repeat: breast cancer is nobody’s fault.  The main risk factor for developing breast cancer is this: simply being a woman.  And the fact is that our risk for breast cancer increases as we become older.  I’ve known several wonderful women now who were remarkably fit, were extremely careful of what they ate, who ran or swam or went to the gym regularly, who developed breast cancer– stage I, II, and III and some who later developed stage IV disease–though their bodies “were in balance.”  Was “understanding health” the “cure” for their metastatic breast cancer?  I think not.

Sheryl Crow and Melissa Etheridge

From “AARP The Magazine”

And here’s another “quotable quote” from Etheridge:  “To Test or Not to Test:  I have the BRCA2 gene but don’t encourage women to get tested.  Genes can be turned on and off.  I turned my gene on with my very poor diet.”  Did she really just say that?  This statement is misleading, offensive, and completely irresponsible.  Unfortunately, the sad truth is that some folks listen to celebrities and take what they say seriously—no matter how inaccurate or ignorant.  This means that Etheridge has a responsibility when she’s speaking to the public.  She has every right to tell her story and to express her opinions—but while making it clear that they are just that, her opinions.  She is not a doctor, yet what she has done is akin to giving “medical advice” that is woefully inaccurate.  She has no right to discourage women from getting testing: the decision of whether to test or not is a very personal and complicated decision that must be based on the evidence, their medical team’s and a genetic counselor’s guidance, and their specific situation.  Etheridge also shows a complete lack of understanding concerning the role that BRCA2 gene mutations play in breast cancer.  The BRCA2 gene mutation does not get “turned on or off” due to choice of diet.  Rather, we have 2 copies of the BRCA2 gene and the BRCA1 gene, which belong to a class known as “tumor suppressor genes.”  The genes encode instructions for making proteins that are involved in repairing damaged DNA.  It’s believed that the mutated BRCA1 or BRCA2 genes’ mutated or missing BRCA protein is not able to help repair damaged DNA or mutations in other genes, causing accumulation of such defects, in turn enabling cells to divide and grow uncontrollably, forming a tumor.  Hundreds of BRCA1 and BRCA2 mutations have been identified, with many associated with an increased risk of breast cancer.  Those who are born with such mutations of the BRCA1 or BRCA2 gene have an increased risk of breast, ovarian, and other cancers due to lack of a working copy of one of the genes.   So Etheridge’s extremely misleading statement is dangerous for several reasons, since it may:

  • Cause those at high risk to blame themselves for developing cancer that was due to a genetic predisposition.
  • Mislead them about an ability to prevent cancer solely with changes in diet.
  • Prevent some from pursuing genetic testing, which in turn may have resulted in their receiving medical interventions that have been found to expand the lives of those with BRCA mutations.
From "AARP The Magazine"

From “AARP The Magazine”

I forced myself to finish reading the entire article, but the last line was another kick in the teeth–a yeah-rah-rah moment: “Cancer, [Crow and Etheridge] agree, has become something they never imagined. ‘A gift,’ they say, almost in unison.”  Perhaps they should have posed in cheerleading outfits with pom-poms rather than those leather jackets?

dancing-cheerleader_zJxctuBO

I do need to pull back on the sarcasm for a moment.  To her credit, Crow has lent her name to the Pink Lotus Imaging Center.  On their website, the Pink Lotus Imaging Center is described as “a comprehensive and integrative breast center exclusively dedicated to the prevention, screening, diagnosis, and treatment of breast cancer.  Headquartered in Los Angeles and founded in 2007, our first location in Beverly Hills was unveiled in 2009.  Since then, we have become a respected leader and innovator in the field of comprehensive breast care.”  And their mission statement is very impressive, warm, and reassuring:

“Our organization was founded with a strong dedication to one clear purpose: To provide the best breast care medically and technologically possible while providing our patients with an environment where they can feel at home; where prevention and wellness matters as much as life-saving treatment; where patients are treated like human beings, not numbers; where integrative medicine is not just a marketing slogan but rather the essence of what we practice; and where women are provided with security and confidence when they need it most. We pride ourselves on the simple fact that our organization’s DNA  was custom-tailored with one person in mind – you!”

But with that said, it’s crucial that both Etheridge and Crow understand and respect the responsibility they have to present their opinions as opinions, not facts or advice.  AARP The Magazine notes that “The two women now say that battling the disease and coming out on the other side deeply transformed them, shaping them into who they are today: survivors, role models, and advocates for social awareness and change.”  Let’s hope that in the future, they’ll both be responsible advocates who can genuinely and helpfully contribute to the conversation.  Otherwise, perhaps Etheridge in particular should stick to the singing.  And until AARP better understands its responsibility to its members and readers as well, perhaps it’s time for those of us who are 50 years of age and older to consider looking for another organization who shows more respect to its members and to the facts.

Update:

A “Non-Apology” Apology from Melissa Etheridge and AARP: Did We Expect Any Less?

Concerning the recent, highly deserved backlash unleashed in response to  AARP The Magazine’s  article with Melisa Etheridge and Sheryl Crow, some of my fellow advocates have eloquently raised a critical point.  They’ve stressed the importance of understanding and remembering the many ways in which those of us who have received this terrible diagnosis form beliefs and make choices to regain a semblance of control.   As an advocate, my first role was serving as a peer mentor for newly diagnosed women with breast cancer.  Like Melissa Etheridge, some focused much of their attention on diet and exercise to try to retain or regain some control after feeling that their world had rocked off its axis.  In many ways, I took steps to try to protect myself as well after my own diagnosis: eventually, my road toward getting back a sense of control took the form of becoming actively engaged as a breast cancer research advocate.  Of course, everyone’s road is different, and everyone’s choice is just that, a choice.

Melissa Etheridge undoubtedly shared many of the same fears that so many of us do—and I understand that some folks tend to forget that in the aura of her celebrity.  Yet with that said, as I discussed in this blog post, I feel very strongly that with her celebrity comes Responsibility, with a capital “R.”  As of today, she has 64.8 thousand followers on Twitter and  462,204 likes on Facebook—and the AARP’s Facebook page has well over 1 million likes.  So when Etheridge shares what is framed as advice, for better or worse, she has an audience of millions.   As a woman who has had a terribly frightening diagnosis, she is absolutely entitled to believe whatever she needs to to get through.  But she also needs to understand that when she speaks, so many (in my humble opinion, far too many) people listen—so I sincerely hoped that she would learn from this and would be careful to frame her opinions as her own, rather than as Gospel.

Etheridge on Twitter

I also do feel that the AARP and “AARP The Magazine” holds the lion’s share of the responsibility here.  Their editorial team made a grave error when determining how to frame this article, dangerously misleading their millions of members and the general public.  Unfortunately and upsettingly, they still haven’t recognized this.  Since this backlash began, the only statement I see that has been issued by AARP is the following, as quoted in “USA Today”:

“Robert Love, editor in chief of ‘AARP Magazine,’ said in a statement that his magazine didn’t ‘take a position or prescribe medical recommendations for breast cancer testing or treatment’ and “did not intend for the views expressed in the article to be interpreted as medical advice.”  Interesting comment, since the image included with the article was entitled “How They Beat Cancer … LESSONS for All of Us.”  In addition, AARP The Magazine’s Facebook page still has a picture of Melissa Etheridge and Sheryl Crow as their cover photo, and the FB Profile Picture also shows the two singers from the magazine’s cover.

And when Etheridge was asked about the backlash in this same “USA Today” article, her response was that “she’s been misunderstood’ and that “I was sad there was such a negative response to what I said.”  She also stated that “I knew all along there would be people who disagreed.  I never wanted that to stop me from saying anything.  I can’t control the way people understand something.”

Misunderstood

 

In another article, published in “Dame Magazine,” where she was again questioned about the backlash, Etheridge responded with the following: “People think it’s dangerous for me to say, ‘Hey, maybe there’s more than just this one way of looking at cancer,’ and they think that’s dangerous because they believe in science, and I understand that totally, and 11 years ago, I was with them. I understood that. In my discoveries, I think that maybe if someone is confronted with this, that maybe this other thought might be helpful for them. For some people, but not all always [Laughs.].”

She was also asked about why she engaged in a Twitter war of words with blogger, “Boing Boing” editor, and breast cancer survivor Xeni Jardin, whose recent blog has this wonderful title, “AARP runs vomit-inducing, quackery-filled breast cancer piece with Sheryl Crow, Melissa Etheridge.”  Etheridge noted, “The reason I did that was it seemed like, all of a sudden, in that one day, I got just a barrage of really awful, awful stuff. Like people standing up on a wall going, ‘Na-na-na-na-na-na. You’re awful,’ and I was like, what? Why do they want to pick a fight with me? I don’t understand, and so I was reading everybody, and some  just want to be mean. Some people do, yet Xeni is a cancer survivor herself. I have always wanted to present myself as, ‘This is just my experience,’ and I felt I was being misunderstood, and I love real conversation, not just okay, I answered this person’s questions. This company put it in a magazine, and then they’re making their comments on it, but no, talk to me. What’s your question? What don’t you understand? This is how I feel, and you’re going to believe what you believe. Just why put so much bitterness and ugliness out toward me? I don’t understand that. Help me understand that, and we can have a conversation about it.”

Twitter wars

Heavy sigh.  So once again, it’s not about the evidence but about poor misunderstood Melissa Etheridge.  Yes, for those of us who are so concerned about the damage done by this article, who still and will always “believe in science,” our true goal here was simply to “pick a fight” with Etheridge, and yes, we really do “ just want to be mean.”  As Etheridge said, “What?!”  Really, is there no limit to this woman’s solipsism and narcissism?  This may be extremely surprising to Etheridge, but no, not everything is about her.  The point, again, is that she’s used her all-too-large platform to spread falsehoods wrapped in the guise of “advice” by AARP in their “special health issue,” to millions who take the words of celebrities seriously.  This is about those millions.

So when all is said and done, no apology.  Not a word about the facts.  Not from AARP.  Not from Etheridge.  Not from “AARP The Magazine.”  All we’re left with are Etheridge’s and AARP’s “Non-Apology Apologies.”   In Etheridge’s case, I wish her well, but the only “lesson” that she’s taught “all of us” is that clearly, from her perspective, this backlash wasn’t due to her and the AARP’s irresponsibility.  Nope, to her obvious regret, the problem is that she cannot control how we think, nor how we understand what she has to say.   So I’m going to ask again, ever so politely: Melissa, please, please  stick to the singing.

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.

A Heart-Wrenching Meeting

Last month I was given a wonderful opportunity, receiving a Patient Advocate Scholarship from the Conquer Cancer Foundation to attend this year’s 50th American Society of Clinical Oncology (ASCO) Annual Meeting.  As an independent advocate, I’m usually in the position of needing to cover my own expenses.  The result is that there are far too many important meetings I’d like to attend every year that I simply cannot, so I often have difficult choices to make.  It was for that reason that I hadn’t been able to attend ASCO’s Annual Meeting for a few years—so I was delighted to be on my way to Chicago to attend the sessions in person again, rather than following the news remotely.

ASCO 2014 Annual Meeting

ASCO 2014 Annual Meeting

The ASCO Annual Meeting is always a valuable conference and, for the oncologists who attend, it can be practice-changing.  When I first attended the ASCO Annual Meeting as a new advocate, it left a tremendous impression on me.  The sheer numbers of people streaming through the immense McCormick Conference Center, the different languages I heard all around me, the dozens of sessions occurring simultaneously, the camera crews interviewing oncologists about breaking news, and being right there in the audience, often with thousands of others, hearing long-awaited findings from critical clinical trials—all around, it was an invaluable experience for me as a survivor as well as a committed cancer research advocate.  But by far my most lasting impression resulted from my discussions with several fellow advocates who were also attending ASCO—some for the first time like myself and others who had been present every year for decades.  I had attended several breast-cancer-specific conferences by that time and had made many lasting friendships with breast cancer advocates.  But the ASCO meeting was the first time that I’d met a large number of advocates whose efforts focused on so many different types of cancer—pancreatic, lung, ovarian, and esophageal cancers, lymphomas, leukemias, and others.  And I found that of course, there were important differences in focus depending on the form of cancer: for example, the very real concerns about stigma impacting lung cancer patients, due to an unspoken feeling by some that they have somehow “caused themselves to have cancer by smoking”; the fact that there are smaller numbers of advocates and resources for pancreatic cancer, lung cancer, and other cancer types due to the unfortunate reality of poor survival rates and numbers of patients; and this names just a few.  BUT I was immediately struck by how much we all shared, having similar concerns, challenges, passions, and frustrations—and by how much we all could learn from and teach one another.  Thanks to that first ASCO meeting, I made friendships with many advocates that will last a lifetime, and we have all reached out to one another over the years since for advice, to share resources, to offer advocacy opportunities, to connect newly diagnosed patients with important support, and to collaborate on critical advocacy efforts.

And all that I just described held true for me during this year’s meeting: how gratifying it was to be surrounded by so many who are dedicating their lives to treating, preventing, and curing cancer; to see dear advocate friends again and to meet talented new advocates who are performing such crucial work; and to participate in and witness new collaborations and partnerships being formed between advocates, researchers, clinicians, and all stakeholders in the cancer landscape.

But …

Something happened during this year’s ASCO meeting that was quite literally heart-wrenching.  And it painfully brought into focus my changing perspective as a now older, perhaps more “hardened” advocate.

The moment occurred when I was sitting in the audience with hundreds of other people during a session entitled, “50 Years of Advances in Breast Cancer Treatment: What Have We Learned? Where Are We Going?”  And the fact is that in the last decade alone, we have made critical advances and learned so much about the biology of breast cancer, which in turn ultimately led to crucial new treatment approaches–perhaps most notably, trastuzumab (Herceptin®) for the targeted treatment of HER2+ breast cancers.  But as I listened to the speakers,  I found myself reflecting on how much we still do not know.  Are we just now only learning the right questions to ask?  What about the terrible reality of resistance that often develops to new agents, including targeted therapies–and of tumor dormancy for ER+ breast cancers that, in about one-third of patients, ultimately leads to a diagnosis of metastatic breast cancer often decades after a patient’s original diagnosis?  And what about what many call the incrementalism that impacts cancer research, where the investment of many years and millions of dollars, as well as the involvement of tens of thousands of cancer patients in clinical trials, may lead to a drug approval based on just weeks’ improvement in overall survival or on surrogate endpoints?  Most importantly, what about the fact that we do not yet have a cure for metastatic breast cancer?

Celebrating my 4th birthday with my first cousin (the cutie with the blond hair) and friends

Celebrating my 4th birthday with my first cousin (the cutie with the blond hair) and friends

To break my chain of thought, I glanced down at my cell phone, planning to quickly check my messages and then turn my full attention back to the speakers.  And that is the moment when I saw the message that broke my heart and turned everything around me grey.  My first cousin, my best friend when we were little, the one I worshipped, had just been diagnosed with metastatic HER2+ breast cancer.  As I sat in that conference room, and the speakers continued to talk about the crucial advancements made for breast cancer patients in the last 50 years, and the audience members all around me were taking notes, snapping pictures of the slides, talking about the presentation, or simply listening, I was angrily wiping tears from my face, thinking over and over to myself, “It’s not enough!  It’s nowhere near enough!  My cousin, my friends with mets, everyone with BC mets, they need a cure, and they need it NOW!”

These thoughts stayed with me during the remainder of the meeting, including when I was listening to what was perhaps the most reported session in the media—a session that made everything even greyer.  It was during this session that Dr. Martine Piccart-Gebhard reported the long-awaited results of a large, multicenter phase III study called the ALTTO trial, which randomized over 8,000 women with HER2+ breast cancer following surgery to either concurrent trastuzumab and lapatinib (Tykerb®), trastuzumab followed by lapatinib, or trastuzumab alone for one year.  The patients in the trial received anti-HER2 therapy either after completing all chemotherapy, concurrently with a non-anthracycline, platinum-based regimen, or concurrently with anthracycline followed by a taxane.  (A fourth arm of the trial, where lapatinib alone was compared to trastuzumab, was closed due to futility in 2011.)

Dr. Martine Piccart-Gebhart

Dr. Martine Piccart-Gebhart presenting the first ALTTO Trial Results

When Dr. Piccart-Gebhard presented these first results of the ALTTO trial during this meeting, she announced that the results disproved the hypothesis that dual anti-HER2 therapy with trastuzumab and lapatinib in the adjuvant (postsurgical) setting enhances clinical outcomes in patients with early-stage HER2+ breast cancer.  She reported that at four years, disease-free survival, the primary outcome of the trial, was 86% with trastuzumab alone, compared with 87% with trastuzumab followed by lapatinib (*P=.610, hazard ratio, 0.96) and with 88% with concurrent trastuzumab and lapatinib (P = .048; hazard ratio, 0.84).

Median overall survival rates were 94% with trastuzumab alone and 95% with both combination treatment arms.   Dr. Piccart-Gebhart also reported that lapatinib was associated with significant increases in diarrhea, skin rash, and liver events, stressing that this may explain why just 60% to 78% of patients in the lapatinib-receiving arms of the trial received at least 85% of the protocol’s specified dose.

In other words, the primary endpoint of disease-free survival was not statistically significant—i.e., no better with the combination of these two specific HER2-targeted agents when compared to trastuzumab alone—and furthermore, lapatinib was associated with more side effects. These results were a serious disappointment, and the expert commentary grimly emphasized the significance of the information gained from this trial.

*What is a P value and hazard ratio?

In most studies, a P value of less than .05 is selected to determine statistical significance, meaning that if the data show that the “null hypothesis” has less than a 5% chance of being correct, then it is wrong.  The null hypothesis is the hypothesis that an observed difference is due to chance alone and implies no effect or relationship between phenomena.  A hazard ratio is the measure of how frequently a specific event occurs in one group compared to how often it occurs in another group over time.  In cancer clinical trials, hazard ratios are frequently used to measure survival at a particular point of time in patients who have received a specific treatment compared to a control group who received another treatment or placebo.  A hazard ratio that equals 1 indicates that there is no difference in survival between the treatment and control groups, with a ratio of more or less than 1 meaning that survival was better in one of the groups.  Together, the P value is used to reject the null hypothesis that the hazard ratio equals 1—that is, that the treatment being studied is not beneficial.

Invited discussant Dr. George Sledge, Jr., former president of ASCO and chief of oncology and professor of medicine at Stanford University Medical Center, reminded the audience of the thrilling moment during the 2005 ASCO Annual Meeting, when the first results were announced for adjuvant treatment of early-stage HER2+ breast cancer with trastuzumab, the first anti-HER2 targeted therapy.  He described this as a “defining moment in our field,” where the associated 50% reduction in the annual risk of recurrence still “remains one of the great success stories.”  But “there was still real work to be done,” and he emphasized that such efforts involved evaluating biology-based approaches, explaining that the combination of trastuzumab with kinase inhibition “at the time appeared to be the best bet.”  (Kinases are enzymes that activate proteins by “signal transduction cascades,” when a molecule outside a cell activates a specific receptor either inside the cell or on its surface.  Activation of the receptor then triggers a cascade of events inside the cell, which may alter gene expression, the cell’s metabolism, or its ability to divide, for example.)  Lapatinib is an anti-HER2 agent that inhibits the intracellular tyrosine kinase domains of both the HER2 and HER1 receptors.   Because lapatinib inhibits two cell surface receptors and is a smaller molecule than trastuzumab, the hope was that it may prove to be more effective when combined with trastuzumab through the two agents’ different mechanisms of action, achieving dual HER2 blockade.

Dr. George Sledge Jr., former President of ASCO, Discussant for Plenary Session on the ALTTO Trial Results

Dr. George Sledge Jr., former President of ASCO, Discussant for Plenary Session on the ALTTO Trial Results

This led to the development of the ALTTO trial, comparing use of trastuzumab alone against the combination of trastuzumab and lapatinib and, ultimately, the findings that there was no significant difference when lapatinib was added to treatment.  Dr. Sledge emphasized that the ALTTO trial required a strict P value of .025 or less to demonstrate statistical significance, and he stressed that no one should be misled by the disease-free survival P value of .048, thinking that this was a positive trial.  Rather, he firmly stated that “This is a negative trial.”  He then posed the important question of whether this trial might later turn statistically positive with further follow-up based on additional results.  His response: “Perhaps, but not very positive, given the results we’ve seen today.”

The negative results of the ALTTO trial were surprising due to the positive results of the earlier NeoALTTO trial, a study in which lapatinib and trastuzumab were compared with trastuzumab alone in the presurgical (neoadjuvant) setting.  Treatment with lapatinib, trastuzumab, and paclitaxel (Taxol®) was found to nearly double the pathologic complete response rate (pCR).  (Pathologic complete response, or no invasive or in situ residuals in the breast or lymph nodes, is proposed as a surrogate endpoint of tumor response that should be strongly correlated with more traditional endpoints such as overall survival and disease-free survival.)

These results are not only extremely disappointing based on lack of improvement with this specific combination therapy; rather, they also raise troubling questions on the approach to the development of new drugs for early breast cancer.   As Dr. Sledge noted, these negative findings “tell us at a simple level that we won’t be using lapatinib in the adjuvant setting,” since as discussed above, he predicts that further follow-up of the ALTTO trial results will not lead to a statistically significant positive result.   But he also stressed that these findings have produced several larger, critical questions: “You might be wondering why a negative adjuvant trial occupies a Plenary Session spot, a place usually reserved for practice-changing data.  I suggest that the answer requires us to rethink our approach to the development of new drugs for early breast cancer.  ALTTO represented a reasonable test of the hypothesis that improvements in pathologic complete response rates were associated with improved disease-free survival.  These hopes have now been dashed.”

Said another way, in recent years, many breast cancer researchers, clinicians, and advocates have become increasingly comfortable with the idea of conducting innovative, smaller neoadjuvant clinical trials, using pCR as a surrogate endpoint to predict outcomes  in the adjuvant setting.  Yet the negative results from the ALTTO trial, following the positive results from its sister neoadjuvant trial, NeoALTTO, serve to undermine confidence in the accuracy of predicting and translating treatment effectiveness and outcome from one clinical setting to another.  As Dr. Sledge noted, the ALTTO trial “invites a larger question” of whether agents that are found to be effective in the metastatic or neoadjuvant settings can be considered predictive of similar efficacy as adjuvant treatments.   “Why have these approaches failed in the adjuvant setting, despite a plethora of preclinical evidence and numerous positive trials in the metastatic setting that show an overall survival advantage?  These setbacks should prompt us to ask, are we facing a systemic crisis in the adjuvant failure of targeted therapies or just having a string of bad luck?”

ErbB family of receptors

ErbB family of receptors

Dr. Sledge went on to emphasize that results from another large adjuvant trial, called the APHINITY trial–which is also studying the efficacy of dual HER2 inhibition versus use of a single anti-HER2 agent–will be of great interest in light of ALTTO’s negative results.  APHINITY is a large Phase III randomized, double-blind, placebo-controlled trial that is comparing the efficacy and safety of chemotherapy, trastuzumab, and placebo against chemotherapy with trastuzumab and pertuzumab (Perjeta®) as adjuvant therapy in patients with HER2+ primary breast cancer.  Like trastuzumab, pertuzumab is a monoclonal antibody that targets the HER2 receptor, but it binds to a different part of the HER2 molecule and thus does not compete with trastuzumab.  Pertuzumab prevents the pairing (called “dimerization”) of HER2 with other HER (ErbB) receptors (HER1 [EGFR], HER3, and HER4), particularly the pairing of HER2/HER3, blocking the signaling pathways within the cell that lead to tumor growth.

 

And in fact, as I wrote in a previous blog posting, “All eyes will indeed be on the large adjuvant APHINITY trial …,” because last year, for the first time for any cancer, FDA approval was given to an oncologic agent—i.e., pertuzumab– in the neoadjuvant setting, based on pCR as a primary endpoint.  This was in no small part because of the ongoing, fully accrued APHINITY trial, whose results, if successful, could support conversion to regular FDA approval or, if negative, will even further emphasize the need to completely re-evaluate our current approach to drug development and clinical trials for agents to treat early breast cancer.

On this last point, when the Oncologic Drugs Advisory Committee (ODAC) voted on whether to support Accelerated Approval for pertuzumab in combination with trastuzumab and chemotherapy for neoadjuvant treatment of HER2+ breast cancer, many ODAC panel members (including myself as the patient representative on the panel) stressed a critical point: that if the results of the APHINITY trial were in fact negative, the sponsor, Genentech, should voluntarily remove pertuzumab for the neoadjuvant treatment of early-stage breast cancer.  As our committee chair, Dr. Mikkael Sekeres, emphasized to the FDA, “All eyes will be on the confirmatory APHINITY trial and on you to verify this initial signal of efficacy and to confirm the bandwidth of safety that we have seen so far.”

In light of the ALTTO findings, APHINITY’s long-awaited results will now carry even more impact, whether they are positive or negative.  In concluding his discussion, Dr. Sledge emphasized that trial failures such as ALTTO “must be elucidated in order to move forward and create new successes.”

At this writing my cousin has received two treatments thus far with chemotherapy, trastuzumab, and pertuzumab.  And in her husband’s words, per her oncologist’s first assessment of her response, “the couple centimeter lump of cancer on her neck” (which had resulted in her stage IV diagnosis) “has gone away.”  I pray daily that this means she is a strong responder to dual blockage with trastuzumab and pertuzumab.  I pray that some day she’ll hear the words that her stage IV breast cancer is now “NED,” meaning No Evidence of Disease. And I pray that in the words of Dr. Sledge, “ … Move forward, we shall, in HER2+ positive breast cancer” and that the many novel approaches actively being researched today will move us closer to the day when we have finally found a cure or cures for stage IV breast cancer–for my cousin, for my far too many friends with this disease, and for all those with stage IV disease.  Please pray with me.