I'm 32-years-old and I didn't know I had breast tissue all the way up to my collarbone. I received a great education, graduated college and excelled in my career. I thought I knew my body well - in fact, taking care of it was an extreme hobby of mine. But, still I did not know that we have breast tissue in any place other than the slopey, little mounds with nipples that I used to have.
I didn't know until that February day in 2008 when I scratched at a mild itch a few inches below my collarbone, almost directly over my heart. That day, I felt a hard, marble-like lump, fixed firmly under my skin. It was far enough away from the little, slopey, mound that I wondered what it was, but close enough to fear the worst.
A small needle biopsy indeed confirmed the worst: positive for breast cancer.
When I started letting people know about my health crisis, at least 95% of the people I told were college-educated adults, who also had no idea we had breast tissue that high up on our chest. Not even my mother, a breast cancer survivor herself or a publicist at Cedars Sinai who felt my tumor the morning of my surgery knew we had breast tissue that high up. The publicist said, "I never would have known the lump was breast cancer." None of us knew what we were expecting a breast tumor to feel like, but it was clear we had no idea it would feel like that.
Recently Representative Debbie Wasserman-Schultz (FL-20) publicly acknowledged her 2008 battle with breast cancer. She shared her story with the world to promote a piece of legislation called the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act targeted to my age group (15-39).
This crucial bill promises to handle four primary focus areas:
a) Public education campaign
b) Health care professionals education campaign
c) Prevention research activities
d) Support for young women diagnosed with breast cancer
The Congresswoman summarizes why we need this bill on her website. She mentions the unique challenges we (those touched by breast cancer) face concerning our body image, relationships & dating, career, risk to our fertility, and financial impact. Her statements are accurate, but polite. Here is the gravity of what happens to at least 11,100 women per year.
Take Divine, a 26-year-old whose doctor told her the lump was nothing. "Let's just keep an eye on it," he said. By the time he addressed it; she was diagnosed with incurable, late stage, breast cancer. He gave her six months to live.
And then there's Patty, a 34-year-old, married woman whose doctor didn't say a word about her fertility risks from chemo. Had she known of her fertility options prior to cancer treatment, she and her husband could be looking forward to children in their future rather than wondering if the cancer will come back. Sadly, 90% of all oncologists FAIL to discuss fertility risks with their patient.
I've met a woman who was 17 when she was diagnosed, a 28-year-old MBA student, and most recently heard of a 20-year-old college student who was just diagnosed. The youngest patient on record was 15 when diagnosed with breast cancer. Equally shocking is that my friend Lisa was diagnosed the day before me and we are exactly 10 years apart. How likely is that to happen?
According to some, it's extremely rare for any of us to receive a breast cancer diagnosis at our age. According to the same "some", we don't warrant a $9 million bill to educate patients in a way that encourages them to know their own bodies; to educate physicians so no physician dismisses a young woman's symptoms or concern if there is something even the slightest bit suspicious. The "some" say we don't warrant government funds to research prevention strategies for our demographic; and most critical to those who have breast cancer today, they say we don't warrant $9 million to fund programs that support our underserved community like My Vision, I'm Too Young for This, Young Survival Coalition, or Feel Your Boobies does.
Both the National Breast Cancer Coalition (NBCC) and Leslie Bernstein, Director of the Division of Cancer Etiology at the City of Hope Comprehensive Cancer Center oppose the EARLY Act calling it "unnecessary . . . based on emotion, not fact" and the bill "does too much HARM," respectively.
I'm fairly certain they didn't read the actual bill, HR 1740, a light 14-page document that outlines exactly what the government would do under this bill and what kind of non-profits would be awarded grants for work they do for breast cancer patients. Their response to this legislation is puzzling at best, despicable at worst.
The NBCC, an organization dedicated to grassroots advocacy, teaching women like me how to advocate for legislation like the EARLY Act, awarded me a scholarship to attend their advocacy training conference the same week I'll be meeting with the Congresswoman about my support for the EARLY Act bill. They oppose the bill because they think it's emotional. I feel like I'm trapped in a Back to the Future remake where suddenly a group of feminists from the 1960's slam another woman for -- "God-forbid" -- being emotional at work.
What isn't emotional about young women losing their lives or saving their lives and losing their fertility due to breast cancer? The greatest advocacy campaigns in history were absolutely emotionally driven. President Barack Obama won an historical election based on inciting the emotion of hope across America. Martin Luther King's infamous speech did not become infamous because it was technical and factual. It's infamous because he transcends time, race, country or circumstance with his poetic, mesmerizing and highly emotional call for Civil Rights Legislation.
Dr. Lisa Bernstein, the etiologist (that's someone who studies the cause of diseases) wrote in an email to Senator Amy Klobuchar of Minnesota:
1. This bill does too much HARM! It cannot help reduce the burden of breast cancer in young women of intermediate ages.
2. I have spent nearly 30 years working to define novel breast cancer risk factors. What we know cannot be translated into appropriate action on the part of young women.
3. Recommending breast self-exam will cause fear, false-positive results of various screenings, unneeded biopsies, and mistrust of the medical establishment.
4. Breast cancer is extremely rare in women ages 15-39
5. The most I ever tell a young woman would be that she should drink moderately, exercise and breast feed babies if she is able. I don't need $9 million to get that message across.
If the HARM Ms. Bernstein is referring to means fewer young women will be drinking more than a ½ glass of wine per day or that more women get the simple blood draw to test for genetic predisposition for breast cancer or that young women become so familiar with their own breasts and cyclical changes that they know a hard, unmoving lump, especially one that grows larger in a matter of months, should be examined by a breast specialist, then Ms. Bernstein is correct -- we are going to do all kinds of HARM in the world even if it means we can SAVE just one life.
If I'm to understand her correctly, when she said "What we know cannot be translated into appropriate action on the part of young women," she is saying that if we know African American women are at higher risk for developing breast cancer at a young age; that telling them this fact, teaching them how and when to do a monthly self-examination, and empowering them to speak up to their doctor when something feels unnatural, does not constitute appropriate action on the part of African American young women?
Ms. Bernstein, where exactly did you get your PhD?
She claims we are "presuming" we know what to tell young women. Yes, Ms. Bernstein, we are indeed presuming that we know to tell young women that their breasts can change every single month, that their breast tissue extends all the way up to their collarbone, that lumpy breasts should be monitored closely, that small needle biopsies are not a big deal, that young women do get breast cancer, that African American women and women of Ashkenazi Jewish descent have a higher chance of developing the disease, that they should know their own breasts really, really, well and that they are allowed to DEMAND an appointment, an ultrasound, biopsy, mammogram or Breast MRI if they have a concern.
Yes, we are indeed presumptuous. And no, we aren't concerned about the 1-2% false-positive results of a small needle biopsy because of the 98-99% likelihood that the results are accurate.
Ms. Bernstein also mentioned that it is EXTREMELY rare for women under the age of 40 to get breast cancer. According to the National Cancer Institute's (NCI) Surveillance Epidemiology & End Results (SEER) (http://seer.cancer.gov/) website, the same statistical registry she mentions in her letter to the Senator, one in every 229 women between the ages of 30 and 39 will be diagnosed with breast cancer within the next 10 years. Komen for the Cure, an EARLY Act advocate acknowledges that 250,000 women under 40-years-old are living in this country with breast cancer. At least 1,000 per 11,000 cases annually, were diagnosed between the ages of 20 and 30.
Is that still considered extremely rare?
Ms. Bernstein, although you don't need the $9 million this bill proposes to tell women to drink less and exercise more, I do. I need it to pay for the exorbitant cost of educating thousands of doctors in multiple specialties across the country who blow their patients symptom's off or fail to address the potential impact of chemotherapy and other cancer treatments on a woman's fertility. I need the $9 million to fund fertility scholarships to these women who don't have $12,000 - $20,000 lying around to freeze embryos or eggs before chemo puts them into menopause.
And I need the $9 million to empower young women to know their own bodies and challenge physicians with your same attitude "It's extremely rare, so we'll keep an eye on it," instead of doing an ultrasound and small needle biopsy. I need the $9 million to improve the lives for survivors and save lives that are currently being lost.
After all, Ms. Bernstein, what is the value of one human life?
Please visit http://www.myvision.org/share_and_connect/message_board.php to continue this dialogue on the EARLY Act Bill.
Follow Alice Crisci on Twitter: www.twitter.com/AliceCrisci