Over the last few years, months, and weeks, we have seen an increasing number of headlines pronouncing immunotherapy as the most exciting development in cancer treatment in recent memory. Yet what is striking to many is that these discussions are not solely taking place throughout the popular media. Rather, immunotherapy is more and more frequently becoming a major topic among oncologists, investigators, government agencies, academia, patient advocates, industry, and other stakeholders–where some express genuine excitement and others weigh in with cautious optimism concerning its potential promise.
Yet despite the optimism, the field is still very much in its infancy, and the evidence is still emerging. As a cancer research advocate, a key part of my role is focusing on the state of the evidence and the implications for patients, ensuring that scientific information is presented clearly and realistically, and raising the need for caution in increasing the hopes of patients when such data is still “in early days.” In other words, because the encouraging results for some patients with previously resistant disease have been widely heralded in the popular media and since immunotherapy is in fact an increasingly active area of research, it is critical that cancer patients and their loved ones truly know what to expect from immunotherapy.
So when I was recently asked to contribute a new article for the American Journal of Managed Care and Evidence-Based Oncology from the perspective of a patient and cancer research advocate, it was immediately clear that the following would be my next topic: “The Promise of Cancer Immunotherapy: Why Patient Education is Critical.” So please click here to read this most recent contribution, and consider sharing it with other patients, advocates, caregivers, and healthcare providers concerning the current realities of cancer immunotherapy, the remaining questions, and why long-term follow-up and continued research is so critical with a much larger number of patients to obtain the mature data needed regarding safety, efficacy, potential adverse effects, durability of beneficial response, and impact on patients’ overall survival.
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.
“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.”
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.
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.
During that indescribable moment when you first learn that you have cancer, many of us experienced a virtual avalanche of thoughts, worries, and raw emotions–or, for some of us, everything came to a standstill, and a thick fog seemed to drop from the sky, blocking all sounds and sights. Or somehow, due to the mystery that is the human brain, both may simultaneously occur, as it did in my case with both of my cancer diagnoses. When I received my first cancer diagnosis, my initial thoughts were stark terror, confusion, denial, the wish to turn back the clock, intense fear that I wasn’t strong enough to handle the pain and terrible side effects that may come with my treatment, a sense that I’d ultimately get through this, deep panic that maybe I was wrong–and then came the self-protective haze to help cocoon me from these far too troubling worries. But one thought that didn’t come to mind was concern that I wouldn’t be able to pay for the costs of my treatment. After all, I was fortunate in that I’d just started working full-time shortly after graduating from college, and I was confident that my insurance would immediately provide coverage for these costs. Silly girl: oh, how wrong I was.
For this month’s special edition of Evidence-Based Oncology’s “Cost and Value Edition,” I was asked to contribute a piece from my patient perspective concerning the financial toll that cancer treatment takes on so many patients. As I began to compose the article, I found myself describing a soul-shattering confrontation I had with my insurance company as a stage III Hodgkin’s lymphoma patient at the age of 22–an experience I’ve never written about before since it was so upsetting, yet one that almost certainly will resonate with many of you who have been diagnosed with cancer. But as I note in this piece, as terrible as that experience was, so many cancer survivors have gone through–and more and more are currently experiencing–far worse. Because the fact is that due to the ever increasing costs of cancer treatments, particularly in this genomic era when the cost of one targeted agent may be upwards of $10,000 per month, such rising costs together with increasingly restrictive health insurance coverage, expensive deductibles, and increasing specialty visit and drug co-pays have created “financial toxicity,” an adverse effect with serious implications that may lead to changes in treatment-related decision-making, higher rates of nonadherence with oral chemotherapy drugs, and decreased overall quality and, potentially, length of life.
As I noted in the article, during this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, I was struck by the fact that the phrase “financial toxicity” suddenly appeared to be on everyone’s lips. I remember appreciating that this very real adverse effect of cancer treatment finally had a name—yet also thinking that though the term may be new, the condition itself was not. Importantly, however, the crucial difference now is that an increasing number of oncologists, patients, advocates, and other stakeholders are speaking about this openly, honestly, and effectively and actively working on measures to prevent or better manage this serious toxicity of cancer. Please click here to read my patient perspective in this month’s edition of Evidence-Based Oncology: “Financial Toxicity: a New Term, but Not a New Reality for Many Cancer Patients.” And please consider sharing your thoughts here on this serious issue.
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.
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.”
“After all, no one dies of breast cancer anymore.”
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.”
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.
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.
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.
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.”
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.
Like every other woman I know, I have always HATED going to the gynecologist. It’s uncomfortable, and though I shouldn’t feel this way, I find the whole thing embarrassing. But the first time I had my annual visit with my gynecologist after having undergone my bilateral mastectomy was … the … absolute … worst.
For weeks in advance, I dreaded the appointment. And on the day of the appointment, I was in full-blown pity party mode. But I had what I think are damn good reasons for feeling sorry for myself—reasons that I typically push away or fully repress, but that refused to be ignored that day. This was going to be the first visit when the “breast exam” really wasn’t going to be a true breast exam—because I no longer had “real” breasts. Rather, I had reconstructed breasts with implants: my plastic surgeon did a phenomenal job, and with all seriousness, my oncologist said the results are among the best he’s seen. Dare I say, in the words of Sidra during the Seinfold episode called “The Implant,” they’re “spectacular.” But they’re not “real.”
I also dreaded sitting in the waiting room, where there almost always was at least one pregnant woman waiting for a prenatal visit with the Ob/Gyn. Thanks to the chemotherapy that I’d received for Hodgkin’s lymphoma in my early 20s, I’d learned many years later that I wasn’t able to conceive.
So I had reconstructed breasts, and I couldn’t have children, so the whole idea of having to go to the gynecologist felt ridiculous, and that made me angry. Of course, I knew that I still had to have my annual visits for optimal health, but I felt odd about the whole thing, like I was an imposter. So I was resentful, irritated, and worst of all, very very down, because all of this made me feel empty inside.
But the visit itself was even worse than I expected. It began as it always does: there was a pile of paperwork to fill out, something that always annoyed me, because I’d been a patient with the same gynecologist for over 20 years, but they still made me complete it all over again every year. And then there was the never-ending wait. I liked my gynecologist a great deal as a person: in fact, he was a family friend. But not once was I taken into the exam room at the scheduled time of my appointment. And when I finally did get into the room and changed into that terrible gown, I always had another lengthy wait—but this time wearing only the gown, which made this second wait that much worse than the first.
So I finally walked into the exam room, changed into the gown, sat down, and prepared to wait. A nurse typically came in before the doctor to ask about prescriptions and to take the patient’s blood pressure. When one of the nurses finally entered my exam room, I was relieved because I just wanted the whole thing to be over. And then she said it. She was holding my chart and some forms and, with barely a glance at me, she plopped my chart on the counter. She then hurriedly tried to hand the forms to me, but I was too busy trying to keep my gown closed with both of my hands. I reluctantly let go with one hand to take the papers, as she said in an obviously distracted, hassled tone, “So as you know, of course, the top form is for your annual mammogram …” What? Did she really just say that to me? I looked down at the paper, which was indeed an order for a mammogram. As I tried to hand it back to her, I said, “Excuse me, but I won’t be needing this, as you can see from my chart.” She looked puzzled, but instead of opening my chart, she said, “Of course you do. You’re in your 40s, so as you know, you need a mammogram every year.” (Okay, if you’ve read my blog before, you know that I take serious issue with that statement, since there is no evidence of benefit for women in their 40s of average risk, yet there is evidence of potential harms associated with mammograms at that age. But I digress…) Considering the mood that I was in, I’m proud of myself that I didn’t immediately fly off the handle. But I was furious. I looked at her and waited until she finally looked me in the eyes. “No, I do not. If you had read my chart, you would have seen that I do not have breasts. They took all of my breast tissue, so there is nothing to conduct a mammogram on–except perhaps my silicone implants, but that wouldn’t make much sense, would it?” Unbelievably, it wasn’t clear whether she heard me, so I tried again. “The most recent records in my chart should include a note from my oncologist about my recent breast cancer diagnosis. And it should also include surgical records about my bilateral mastectomy and immediate reconstruction. Without having any breast tissue, I really don’t think that this mammogram is necessary, so I ask that you take this back, please.” She accepted the piece of paper, mumbling “sorry” under her breath, and then simply walked over to the wall to grab the blood pressure cuff. She asked me absolutely nothing about my breast cancer diagnosis, not the type or stage, whether it was ER, PR, and/or HER2+, what type of surgeries I’d undergone, which specific chemotherapy drugs I’d received, nor whether I had received radiation. Even when she then reviewed my current medications, she did not ask whether I was taking Tamoxifen or an aromatase inhibitor should my cancer have been ER+.
When she finally did speak, it was to ask when my last period was–more solid evidence that she had not even taken a glance at my chart. After all, it was my gynecologist who had broken the news to me that my original chemotherapy had taken my fertility. As I struggled to remember the last time I’d menstruated, she became impatient and said that I could “just estimate.” My response: “I’m not trying to remember a specific day from last month, since it’s actually been a few years. But I honestly cannot remember which year it was.” No response from Nurse Ratched.
And the icing on the cake … Remember when she picked up the blood pressure cuff? She immediately went to my left side and went to grab my left arm. I stopped her and said, “Look, I’m not trying to be difficult. But please take my blood pressure from the right side, not the left.” She simply raised her eyebrows, waiting for an explanation. “My breast cancer was in the left breast and in the sentinel node, so the surgeons had to remove several lymph nodes.” Eyebrows remained raised, waiting for more information to try to make some sense out of what her patient was rambling on about now. “I don’t know how strong the evidence is. But my surgeons asked that I never have my blood pressure taken on the left side. They explained that because some of my lymph nodes were removed, I was at risk for developing lymphedema. Because blood pressure cuffs constrict tissue, some suggest that it may cause or worsen lymphedema. So please take my B/P on the right side.” She finally lowered her eyebrows, moved to my right side, and took my blood pressure. With no small relief, I’m sure, she then felt she was done with her “difficult” patient and headed to the door. But before she fully escaped, I called after her and pleasantly asked, “Could you please make a notation on my chart that my blood pressure needs to be taken on the right side?” She briskly nodded her head and left the room.
I immediately put my head in my hands and tried to keep the tears from coming. This nurse was clearly in the wrong profession, and I knew that the encounter I’d just experienced really said nothing about me, but spoke volumes about her. But I was absolutely livid, embarrassed, upset–and even emptier inside than I had felt just a few minutes before.
When my gynecologist entered the exam room about 15 minutes later, I’d had enough time to compose myself, and he came in with his customary warm smile, friendly handshake, and good wishes to my family. He also spent several minutes asking about how I was holding up after my diagnosis, discussing the treatments I’d received thus far, and talking about my options concerning Tamoxifen versus an aromatase inhibitor. He obviously knew a great deal about my diagnosis before he stepped into the room, was genuinely concerned, and provided me with the same exceptional care that he always does. So despite the terrible experience I’d just had with one of his staff members, I did continue with my gynecologist. However, on the spot, I decided that I would never see him in this specific office location again. Rather, I’d vastly prefer to make the substantially longer drive to another of his office locations, because I absolutely refused to have any dealings with that nurse again. I truly hope that after she’d walked out of my exam room, she thought about our encounter and realized that she owes her patients so much more: just for starters, actually LOOKING at the chart, LOOKING at her patients in the eye, LISTENING to her patients, and treating us with the RESPECT and the concern that we deserve. Sadly, however, I very much doubt that’s the case. I’d say it’s far more likely that she started shaking her head and rolling her eyes immediately after closing my exam room door, mumbled under her breath about that “pain in the ass” she just had to deal with, and then briskly went on to ruin her next patient’s day. In retrospect, though I’d been struggling with feelings of emptiness on that terrible day, it was actually the nurse who was truly, profoundly empty—empty of compassion, empty of empathy. My only regret is that I didn’t tell my doctor about his nurse’s atrocious, insulting, unprofessional behavior. However, I sincerely hope that if she didn’t learn anything from our encounter, her behavior eventually caught up with her and that she’s now in a different profession for which she is better suited—such as a clerk at the DMV.
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.”
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.
- 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.
- 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.
- 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.