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Banking on breast cancer? Stop it.

03 Sunday Oct 2021

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It’s Breast Cancer Awareness Month, but you already knew that. Some of you are beyond aware, fatigued by the reiterated reassurances that early detection is the next best thing to curing breast cancer.  You might even be quietly resigned to accepting “No Evidence of Disease” (NED)  as good as it’s going to get, but you might not say so out loud.

Breast cancer impinges on the lives of everyone you now, in ways not always immediately discernible, given the complexity of the disease, the politics of its lexicon, the business of it. Thus, during Breast Cancer Awareness Industry Month, you might catch yourself using a strange vocabulary that keeps you at a safe distance, employing words and phrases that minimize and sanitize the reality that, as the late Christopher Hitchins often reminded us  “there is no Stage V.”  You might catch yourself on social media making it cute – really cute.

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So are you wondering what you can do this October? Register for another race for a cure? Commit to monthly self-examinations of your breasts even though you’re not really sure what you’re looking for? Schedule a mammogram? If so, remember to ask about tissue density. Unless you live in a state with tissue density notification laws, you might not know  – and you really should – if a deadly cancer is lurking in the dense tissue that hides it from a standard mammogram – it’s like looking for a polar bear in the snow.  It’s important to ask about ultrasounds and MRI screenings too. I didn’t know that. Nor did I know to ask. Meanwhile, invasive breast cancer flourished in the tissue of my right breast for perhaps a decade until that October when I found the lump.

Most of the time, breast cancer might not cross your mind. Until I was diagnosed, it didn’t occur to me even as a remote possibility. I had things to do, people to see, a family that needed me. Cancer was simply not on my itinerary other than in Octobers past, when I registered for the annual Komen walk. Only then – and in the most superficial sense – did breast cancer register with me.

I recall a blindingly bright Sunday morning in Phoenix, Wesley Bolin Memorial Plaza awash in pink, shimmering with tens of thousands of people walking, running, hoping for a cure. Pink feather boas tossed around shoulders, “I love boobies” bands hanging from wrists, T-shirts announcing that “Real Men Wear Pink” and others urging us to “Fight like a Girl.” I walked with my daughter, probably believing that we were making strides towards an elusive cure for a disease I never dreamed would touch us. A carnival in pink – so much pink, enough to make me more aware of breast cancer, but not enough to help me fully understand what causes it, how I could have prevented it, and what I can do to keep it at bay. Breast cancer awareness was a party, and I was right there in the thick of it, with a pink tote bag.

Over the course of this month, you might still feel compelled to buy a product because it bears a pink ribbon.  You might not know that any company can attach a pink ribbon to its product. Pink ribbons aren’t regulated. So if you buy a pink ribbon product, consider asking what percentage of your donation will directly support the “fight” against breast cancer. Consider asking where they are sending your donation.

Here’s the thing, if you don’t  think before you pink, someone else will think for you. Namely, Susan G. Komen®  with its history of making breast cancer cute and making money – lots of money – for its official partners – partners like Bank of America. Komen has received in excess of $10.8 million from Bank of America since 2009, and this month Breast Cancer Action’s Think Before You Pink® campaign is calling them out.

Every purchase made through the Pink Ribbon Banking Program goes toward the $1.5 million that Bank of America has pledged to Susan G. Komen® between 2021 and 2023. Sounds good, right? Good for the fossil fuel industry – not good for breast cancer.

According to a report by Rainforest Action Network, in 2020, Bank of America invested $42 billion into fossil fuels. In the five years since the signing of the Paris Climate Agreement, Bank of America poured over $200 billion. You’ll recognize Bank of America’s fossil fuel clients, big names like  –  include Exxon, Occidental, Marathon Petroleum, BP, Southern Co, Chevron, Pemex, Petrobras, and ConocoPhillips.

This image has an empty alt attribute; its file name is download-13-1.jpeg As a major investor in the fossil fuel industry and good friend to the Susan G. Komen foundation,  Bank of America invested over $42.1 billion in fossil fuel projects last year alone. For instance,  you may not know that just last month, Bank of America closed a deal to underwrite a new CAD $1.5 billion bond for Enbridge Inc., part owner of the Dakota Access Pipeline and the company that is  building the Line 3 tar sands pipeline and has reimbursed  Minnesota law enforcement over $2 million or cracking down on unarmed Indigenous water protectors as Tara Houska, Giniw Collective explains:

Bank of America’s client has paid out over $2M to local law enforcement here in my people’s territory, We’ve been tortured, shot at, maced, and jailed. Over 800 arrests and gross human rights violations alongside the irrevocable harm to our land, our water, our wild rice. To call any part of this tar sands company ‘sustainable’ is unconscionable. To fund its destruction of what ecosystems remain against the will of multiple tribal nations is abhorrent.”

There’s a pattern here.  Bank of America claims to care about our environment, sponsoring New York Climate Week while at the same time renewing funding for the Line 3 tar sands pipeline. The bank is also a national presenting sponsor of Komen’s 3-Day Walk®, Race for the Cure®, and More Than Pink Walk®. Bank of America claims to care about curing breast cancer while funding an industry that exposes us  to toxic chemicals including: benzene, polyaromatic hydrocarbons (PAHs), dioxins, and PFAS along the continuum – from extraction to processing, to exposure to fossil fuel products and byproducts.

Bank of America is a pinkwasher.

Susan G. Komen® claims to care about ending breast cancer, but at the same time continues to profit from an industry that causes the disease. On its website, Komen boldly states, “Creating a world without breast cancer starts with you.” Agreed. And, here’s one thing you can do. 

This month, join Breast Cancer Action’s Think Before You Pink® campaign in demanding that the Susan G. Komen® phase out the Pink Ribbon Banking Program  with Bank of America.

Join Breast Cancer Action throughout the month of October, with the first action launching tomorrow, Monday, October 4.

christmas past

12 Wednesday Dec 2012

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During a staff meeting today, the conversation turned to what we were doing  this time last year, and I realized that I couldn’t remember much about it. Looking around the room at the faces of people I see every day, I wondered if any of them could detect my unease. Could they see that I am much different today from the woman I was last year?  Does it even matter? Surely changed and unsure, it was with some trepidation that I headed home to search through over a year’s worth of writing. When I landed on my first blog post, entitled “My New Pink Ribbon,” I held my breath. Not remembering what I had written and knowing that someone I know is undergoing a mastectomy today, I fell into the days before a Christmas past, when everything changed for me:

My First Blog Post: “My New Pink Ribbon”   Nov. 9, 2011

I have shown only a little restraint in not searching every corner of the internet for information about fine needle aspirations and core needle biopsies of the breast. The latter sounds more ominous. November 9th at 1:30pm, I was scheduled to go to Scottsdale Healthcare for a core needle biopsy.  Once again supine in a small room illuminated only by images on an ultrasound monitor and the kindness of two technicians, I was out of sync. My responses to questions were delayed, but I still had the presence of mind to tell them in no uncertain terms that I did not want to be talked through the procedure. I was discombobulated, I can only assume, by my own fear of what was in store for me. Then without fair warning, they had veered from the script I had prepared in my head. The doctor swiftly announced they would be doing three biopsies. Panic rising, the way it does when the pilot announces a little turbulence up ahead, I managed to ask, “Three?” Nobody had said anything about a third; I had barely begun to accept the existence of a second. Again, “Three?” Were they quite sure? How could there possibly be three tumors in a breast that had passed three mammograms? Discomfited by the almost reassuring response that, yes, the other doctor had ordered three biopsies, I settled in and soon found myself transfixed by the images on the monitor. Strangely hypnotic and relatively painless except when I allowed myself to consider the length of the hollow needle piercing my skin, advancing through three benign or cancerous somethings, and extracting tissue. Surreal. Stuff of The Learning Channel.

Had I known what they were doing by the time they got to the third one under my arm, I like to think I would have protested the metal marker being placed deep within my breast tissue, a marker in the shape of the ribbon synonymous with Susan G. Komen and a cure, a ribbon I’ve grown to detest. That, and doing things on the count of three.  “Relax. One. A little poke. Two. Lidocaine going in. Three.” And then a sound like a staple gun. “You’re doing great.” Three times, I did great. I did especially great on the third one which was awkwardly positioned. I didn’t realize just how awkward until the subsequent mammogram which was more like an undignified and ungainly dance, my partner a technician charged with compressing my small punctured breast between the two plates in such a manner that the surgeon would be able to see the new metal marker under my arm. Surgeon. Surgeon? Nobody had said anything about surgery. Or had they? I could not recall.  After much repositioning and squeezing and picture taking, someone in another room was  satisfied with the X-ray picture. A fleeting thought of the Wizard of Oz added a new dimension to the experience.

Finally, with a flourish and a smile, the technician presented what had been declared a satisfactory mammogram picture of my breast. There it was. Right there on the bottom right of the screen. A new metal tissue marker, fashioned in the shape of the ubiquitous breast cancer awareness ribbon. “See? There’s that cute little ribbon.” in my tissue. In me. Without my permission. Branded. Speechless.

Ironically and thankfully, all this took place after we had ushered out October, Breast Cancer Awareness Month (although early in November all those commercials were still airing). Until then, I’d considered the pink ribbon as not much more than a pretty embellishment on yogurt lids and bottles of water and Facebook badges, but as I found myself ever deeper in cancer country, that ribbon had begun to offend me. I could barely tolerate seeing one more, especially not one that had been inserted in my very tissue.

This new affront helped pass the time while I waited in another waiting room. In fact, I was so preoccupied by pink, that I was alarmed to notice the patch of red seeping from the biopsy site through to the front of my hospital-issued blue and white striped gown. I had not anticipated blood or ice-packs or the surprise mammogram, but I was beginning to learn that cancer brings one surprise after another. As I sat there, exposed and vulnerable, an icepack atop my bruised and bleeding breast, a lovely young stranger, dressed in a gown like mine, put her hand on my shoulder, looked me right in the eye and asked conspiratorially if “they” had poked me. Quite honestly, I wasn’t sure what they had done. No matter, she assured me I would be in her prayers that evening.

It is a strange sisterhood indeed, where an instantaneous intimacy allows us to talk about being poked and staged and prayed for. It made me uncomfortable, but not as uncomfortable had I been left out by language. Language is everything. Maybe it can be attributed to  my immigrant spirit, but I knew I had to learn the vocabulary, the rules, the norms for breast cancer patients gathered together in waiting rooms. And I had to learn quickly. Apart from the fact that I was well past the best age for learning a second language, I simply did not want to be immersed in this new culture.

I have other things to do. Christmas is coming. 

The pathology report would come back on November 11th, Veteran’s Day. The Breast Care Patient Navigator, a new one, called to tell me I should really bring someone with me – did I have a husband? I did? Oh, good. I should bring him along. She would see us both at 1PM on 11.11.11. I knew that bringing my husband would mean at least one of us would be able to listen, while the other  would focus on hearing the only words she wanted to hear with Christmas around the corner: Benign. Benign. Benign.

so you say you want a revolution?

01 Monday Oct 2012

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. . .  so what are you going to do about it? It is Breast Cancer Awareness Month, but you already knew that. I imagine some of you are beyond aware, fatigued by the reiterated reassurances that early detection is the next best thing to curing breast cancer. Maybe the myth of mammogram as the perfect test is beginning to wear on you. You might even be quietly resigned to accepting “No Evidence of Disease” (NED)  as good as it’s going to get.

Breast cancer impinges on the lives of everyone you know, in ways not always immediately discernible, given the complexity of the disease, the politics of its lexicon, the business of it. Thus, during Breast Cancer Awareness Month, we catch ourselves using a strange vocabulary that keeps us at a safe distance, employing words and phrases that minimize and sanitize the reality that, as the late Christopher Hitchins often reminded us, “there is no Stage V.”

So this October, what are you going to do to end breast cancer? Are you going to register for another race for a cure? Are you going to commit to monthly self-examinations of your breasts even though you’re not really sure what you’re looking for? Are you going to schedule a mammogram? Will you ask about tissue density? Unless you live in one of the five states with tissue density notification laws, you might not know if a deadly cancer might be lurking in the dense tissue that hides it from a standard mammogram. I didn’t know. Nor did I know to ask. Over the next thirty days, will you feel compelled to buy a product because it bears a pink ribbon? Will that make you feel better? Did you know that any company can attach a pink ribbon to its product? Neither pink nor ribbons has been regulated. When you hand over your money, will you ask what percentage of your donation will directly support the “fight” against breast cancer? Will you ask where they are sending your donation? Remember, if you do not think before you pink, someone else will think for you.

Yes. This October will be different. Admittedly, it is with some embarrassment that I come so late to these questions about breast cancer. After all, until I happened upon the lump last October, I was only aware of breast cancer as the thing that happened to other women. Women with risk factors. Women who don’t show up for their mammograms. Women who don’t know how to manage stress. Women who are often blamed and blame themselves for whatever ails them. Now I know, I was the woman who was just the 1 out of 8, the one with no risk factors, but who had dense tissue that concealed invasive breast cancer growing in my right breast for perhaps 10 years. I soon learned that dense tissue appears white on a mammogram, as does cancer, so it is important to ask about ultrasounds and MRI screenings too.

Until I was diagnosed, breast cancer did not occur to me as a remote possibility. I had things to do, people to see, a family that needed me. Breast cancer was simply not on my itinerary. What a fool. Ironically, laughably, I somehow missed the point that the greatest risk factor for me is being a woman. Only in Octobers past, when I registered for the annual Komen walk, and only in the most superficial sense, did breast cancer register with me.  I recall Wesley Bolin Memorial Plaza awash in pink, shimmering with tens of thousands of people walking, running, hoping – waiting for a cure. Pink feather boas tossed around shoulders, “I love boobies” bands hanging from wrists, T-shirts announcing that “Real Men Wear Pink” and others urging us to “Fight like a Girl” – in all, a carnival on a blindingly bright Sunday morning in Phoenix. I walked with my daughter, believing at some level that we were literally making strides towards an elusive cure for a disease I never dreamed would touch my family and me. I have lost count of the October campaigns –  enough to make me aware of breast cancer, but not enough to help me understand what causes it, how I could have prevented it, and what I can do to keep it at bay.

Being aware is just not good enough, not when I stop to consider that in 1975, years after we had placed a man on the moon, the odds of a woman in the United States developing cancer in her lifetime was 1 in 11.  Not even a decade later, Susan G. Komen would be dead, ravaged by metastatic breast cancer. I wonder what she would make of the odds today, which according to the National Breast Cancer Coalition, stand at 1 in 8.

One out of every eight women born today will be diagnosed with breast cancer at some time during her life. 

Source: National Cancer Institute

I am 1 in 8.

If we keep doing what we have always done, breast cancer will continue to kill women, men too. Our collective awareness without real action feels hollow in light of the National Breast Cancer Coalition estimates that by 2030 – when my little girl will be all grown up, at 31 years old – 747,802 women worldwide will die each year from breast cancer.

Not all breast cancers are the same. I know that now. Not all tumors behave the same way. Not all women are the same. Still, so many with breast cancer find themselves subjected to the same treatment – a one-size-fits-all dictum of surgery, radiation, chemotherapy, and hormonal treatment (not necessarily in that order). Then there are the men with breast cancer. We don’t hear as much about them in October, or at any other time of the year for that matter. Why is that? Men get breast cancer too. The American Cancer Society estimates that 410 men will die of breast cancer in 2012 in the United States.

So this October, I plan to do something different. Something revolutionary.  Please join me in The Health of Women (HOW) study, a program of the Dr. Susan Love Research Foundation, the first international online study for breast cancer.

Below is general information from the website – please talke a look, visit the Frequently Asked Questions, and take part. This is a groundbreaking opportunity to help change the global conversation about breast cancer:

“The HOW Study will track hundreds of thousands of women (and men) over time to learn what causes breast cancer, and how to prevent it.  HOW will also study long-term breast cancer survivors in order to get a better understanding of how they are beating the odds. This is the first time a study of this size and magnitude is collecting data entirely online. This is the first study that will allow the participants to submit questions they want studied.

Once you sign up to become a member of the HOW Study, you will receive periodic questionnaires that will ask questions about different health and exposure topics. Each new questionnaire will be released in a “Call to Action” email and will address a specific topic, such as reproductive health, cancer history (for those with breast cancer), environmental exposures, and much, much more. Each questionnaire should take about 60-90 minutes to fill out, and you will get a new one every three to four months.”

I understand if you are worried about your privacy. Don’t be. “The Dr. Susan Love Research Foundation will be the primary keeper of your information. This includes both your research data and your personal contact information. The Dr. Susan Love Research Foundation will be working with City of Hope Comprehensive Cancer Center to analyze the data we collect, however they will only have access to your anonymous research data and not your personal information (like your name and address). Only the Dr. Susan Love Research Foundation will have access to both your personal and research data and these two pieces of information will be never be stored in the same place to protect your privacy. There may also be instances where your research data is shared with other scientists to help their research. As with City of Hope, these researchers will never have access to your personal contact information.”

To sign up, click JOIN HOW.

I am bound to do something different, something better, so my daughter can make her way in the world with a little more peace of mind, a little more confidence, knowing that I was part of a major global effort to find out – after much too long – what causes  breast cancer and how we can prevent it from killing more people.

Small steps are not enough. It is time for bold giant leaps.

We cannot continue to lose 108 women to breast cancer every day. Please help us change the story for so many women.  

I am not the cure. I am the revolution. You are too.

 

i’m registered

19 Sunday Aug 2012

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The last time I was asked about a registry was about fifteen years ago, within the context of the room where my unborn child would eventually sleep. Would it be pink or blue? All things nice, sugar and spice or frogs and snails and puppy dog tails? Lumbering around Babies ‘R’ Us, the week before the birth of my daughter, I still had not registered. I could not bring myself to make a list (the way I had only ever done for Santa Claus) of presents people might buy to celebrate the arrival of a new baby. It felt demanding. More than that, if I am truthful, it felt presumptuous, as though showering an unborn baby with gifts might tempt the fates.  Thus, to the consternation of earnest well-wishers better versed than I in baby gift registry etiquette and dear friends, near and far, who were poised to pay for gender-specific gifts that might match the nursery décor or make life with baby easier, I did not register. Delayed gratification won out – how often does that happen these days?

Over the years, I have not given much thought to registries, until one day last week, when an envelope arrived from Scottsdale Healthcare. As has become my habit with mail from the hospital, I slid it to the bottom of a pile, anticipating the obligatory pink statement, its itemized charges as confusing as the explanation of benefits that strangely never seem to apply to me. By the time I returned to it, checkbook at the ready, I was surprised to find not a bill, but a straightforward request for information from the Cancer Registry and a postage paid return envelope. There, on the top of the form, my full name was typed. Below it, an “Accession Number,” a series of digits which, after a fascinating online search, I learned, uniquely identifies my cancer and me. It is a standardized code that consists of “the year in which the patient was first seen at the reporting facility and the consecutive order in which the patient was abstracted.” Abstracted?  Again, I am indebted to Google for leading me by the hand to a 165 slide Power Point presentation prepared by the Florida Cancer Data System (FCDS) for a University of Miami Online Abstracting course. Hardly the most relaxing way to spend a Sunday afternoon, this online trek led me to FORDS, the Facility Oncology Registry Data Standards manual which provides definitions and detailed instructions for coding patient diagnosis, treatment, and outcomes. For a facility’s cancer program to be approved by the American College of Surgeons Commission on Cancer (CoC), it must fully implement FORDS. (So conditioned am I within the breast cancer culture, that when FORDS first popped up on my Google search, I assumed it had something to do with Ford’s Warriors in Pink.) Approved by the CoC, Scottsdale Healthcare, is required to “accession, abstract, and conduct follow-up activities for tumors diagnosed and/or initially treated at the abstracting facility.” Its Cancer Registry will contact my physician or me every year for news of my progress and to remind me – lest I forget – that I have cancer.

In a nutshell, the abstract is a “snapshot” of a single primary tumor at the time of initial diagnosis, and it provides a way to monitor the tumor throughout a patient’s life. Essentially, it is the story of a cancer in “five chapters”:

  1. Registry information: the reporting facility.
  2. Demographics: who is the patient?
  3. Tumor Information: What is the anatomic site, histologic type and extent of the cancer at the time of diagnosis?
  4. First course of treatment: What modalities were used to treat the patient?
  5. What happens to the patient following treatment?

Source: Florida Cancer Data System 2008

In addition to the hospital-based registry, I also discovered the Arizona Cancer Registry, “a population-based surveillance system that collects, manages and analyzes information on the incidence, survival and mortality of persons having been diagnosed with cancer.” Duly fascinated by all of this, I ventured deeper to find a brief history and timeline of cancer registration:

A Timeline of Cancer Registration (Source: National Cancer Institute)

2500 B.C.

Earliest known description of “cancer”: the “Edwin Smith” and “George Ebers” papyri which describe surgery, pharmacology, and mechanical and magical treatments

400 B.C.

Hippocrates described a breast “cancer” as “karkinoma” (known now as carcinoma) during surgical removal of a tumor

1629 A.D.

Cancer is first mentioned as a cause of death in the Bills of Mortality in England

1728

London’s “General Census of Cancer” – the first known systematic collection of information on cancer is generated

1839

Implementation of death registration (what we now know as “death certification”) in the United States

1901

Earliest known population-based systematic collection of data on people with leprosy in Norway (a population-based leprosy registry)

1926

A bone sarcoma registry established by Dr. Ernest Codman at Massachusetts General Hospital, one of the earliest registries established for a specific type of cancer

The first hospital-based cancer registry at Yale-New Haven Hospital was organized in New Haven, Connecticut

1935

First population-based cancer registry in the United States established in Connecticut

1956

The American College of Surgeons requires a cancer registry as a component of an approved cancer program

1971

The U.S. National Cancer Act budgets monies to the National Cancer Institute for research, detection, and treatment of cancer

1973

The Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national cancer registry program

1992

U.S. Public Law 102-515 establishes the National Program of Cancer Registries (NPCR) and is administered by the US Centers for Disease Control and Prevention (CDC)

1993

Many state laws make cancer a reportable disease

In 1992, legislation made mandatory the reporting of cancer in Arizona. Arizona Revised Statute §36-133 also required Cancer Registries to conduct lifelong follow-up of cancer patients, which brings me back to the letter I received from the hospital last week. At first blush, it seems vitally important, and, if it will help us find out what causes and how to prevent all cancer, of course I want to complete the form with every detail about my surgeries and treatment. To that end, my data picture should be accurate. But how accurate can it be, when no one can tell me with any degree of certainty how long I had cancer before I detected the lump myself? My breast cancer had evaded detection by three mammograms, camouflaged by dense tissue. So what are the implications for the data within the context of early detection and survival?  Is it possible that data may be manipulated? In my view, as a layperson with breast cancer and not a statistician, the Susan G. Komen foundation has deftly used statistics, not only to place the onus on women to detect breast cancer, but also to “survive it.” By manipulating statistics to claim that “The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? 23 percent.”
Komen overstates the power of mammograms and, once again, distracts us from the horrible reality that metastatic breast cancer kills approximately 40,000 breast cancer “survivors” annually. With all the billions of dollars and mountains of data available to us, why is that statistic not changing? Perhaps the real truth behind the numbers lies somewhere in our taking a giant collective step towards accepting the premise of Sir Austin Bradford Hill, pioneer of the randomized clinical trial:

 Health statistics represent people with the tears wiped off.