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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.

 

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