I was in my twenties when I began to take notice of all the breast cancer stuff that seemed to be everywhere at certain times of the year, and it was around this time that I began to be more conscious of the issue of breast cancer - of all the pink stuff and knowing that it was important to worry about it when you turned 40.
Every time I heard of breast cancer, it was within the context of women getting it at age 40 and over, so did not think I had anything to worry about.
I had been doing my breast exams since I was thirteen; my mother taught me to do them at a young age, but still it never dawned on me that I could actually GET breast cancer, until it happened to me. When my mother had taught me to do my exams, she had explained that even though I barely had breasts, it was important that I know what they felt like, so as they grew and changed, I would know if anything abnormal appeared. Thanks to her education and diligence, 18 years later, when I found the lump, while in the shower, I knew immediately that something was wrong and that I needed to get checked.
After finding the lump and visiting with a surgeon, even though the lump would not aspirate, the breast surgeon had it in her mind, that since I did not fit a statistic, I was to young to get breast cancer, so I should forget about it and go home - if it bothered me to come back in six months, but not to worry. "You're too young". I did wait six months and the lump doubled. After pushing for a biopsy, she did one and then called to tell me that it was cancer after all. The lump was Stage II - what if I had waited six more months?
The sad truth about this story is that it is not unique. As I lay in my bed, bald, sick from chemo and wondering where life would lead me, I learned that approximately 11,000 American women younger than 40 are diagnosed with breast cancer annually. Of those approximately 1,100 die because they were told "You're too young" or "Come back in six months". I also learned that younger women have more aggressive breast cancers and higher mortality rates.
Over the past three years, I have had an opportunity to meet and come to love many of these young women - some still living and some who have lost their lives needlessly to a preventable death from a disease that they did not know could take their lives.
I thought to myself so many times, what if I had not been taught to do my breast examinations at an early age? What if I had not pushed the doctor for further diagnostics? What if I had not been educated and been my own advocate? Where would I be today? My being alive today, similar to the 10,000 or so women who survive breast cancer, are a result of awareness and early detection. When discovered in time, survival rates are higher. Knowledge and education are key.
In 2006, when Representative Debbie Wasserman Schultz introduced The Breast Cancer Education and Awareness Requires Learning Young Act (The EARLY Act) - H.R. 1740, S. 994, I was honored, as a young survivor of breast cancer, and representative of Tigerlily Foundation, to stand by her side, along with Senator Amy Klobuchar and representatives from other breast cancer foundations with young adult populations, to support this legislation.
I thought, "The EARLY Act is just what younger women need. If it wasn't for early detection, many of them wouldn't be alive today." Imagine my surprise when opponents of this bill began to sprout up. Some said it was harmful and others said it would frighten young women. Yet, other healthcare practitioners and breast cancer advocates thought we needed more evidence, to prove that if young women did breast self examinations, it would affect their mortality rates. Others argued that it might cause more young women to go for needless biopsies and this might also impact healthcare costs and these young women's health long term. Still, others said that only a small percentage of younger women get breast cancer, so why make the investment in this legislation.
After all the arguments, I still don't get it. What do all of those things matter if you get breast cancer at a young age and die because you are unaware of the risks? What do fear, medical costs, long term health issues, and what more harm could it cause if a young woman become metastatic and has to deal with a shortened life span, lack of proper insurance coverage, fertility issues, co-payments, high prescription costs, lack of fertility, physiological, mental and emotional issues and the inability to properly care for her family or pursue her goals and dreams because she has been struck by a silent enemy while she is in her prime?
Also, I wonder, don't these young women have the right to life? That means that they need to be given the proper tools to make proper decisions about their health. That means that although it is a small population, these young women are not just numbers, they are individuals whose lives matter, as much as those in the majority.
The thing is, these young women can and do survive if they are aware and find their lumps in time. At the very least, if a young woman never got a breast lump or other symptom, she could be an advocate amongst her peers, friends, family and in the community.
The EARLY Act, introduced by Rep. Wasserman Schultz, would support this type of awareness and education. The bill has more than 360 cosponsors in the House and more than 36 in the Senate. It would fund a national education campaign on breast cancer and young women. The educational campaign would reach out to young adult women and also to physicians. It would not only educate young women and the communities in which they live, the bill would also help young women who have breast cancer get social and psychological support. The EARLY Act will encourage young women to 1) learn the facts; 2) know their bodies; 3) speak up for their health; and 4) embrace support. The draft bill calls for expenditures of $9 million per year from 2010 to 2014. Similar to other early detection and screening programs, it is simply an educational tool, and a powerful one, as it could change the lives of many young women nationally and maybe on a global scale.
It's true that only a small percentage of young women get breast cancer. However, we tend to have higher mortality rates. Our futures grind to a halt: Our careers are put on hold, the disease may affect our ability to bear children, and we have to deal with problems such as under-insurance, along with challenges to our long-term health that arise from more aggressive treatments.
Does it hurt young women to inform them about breast cancer? What would be more harmful - arming them with education, awareness and lifesaving tools life, or leaving ignorant of a disease that could rob them of their future? Without awareness, how would younger women know what to look for? Without awareness how could we push our doctors to take us more seriously when we go to them with a lump or, in some cases, with excruciating pain.
My 6-year-old daughter told someone the other day, "My mommy and I are breast cancer survivors". My eyes filled with tears. It's been nearly three years and she is just now beginning to vocalize how she feels and what she went through. We need the new programs of the EARLY Act to address the psychological and social needs that younger women and younger families have, which are often different from those of women 40 and over.
Today, I am a three-year survivor of breast cancer, and I am alive because of early detection. As I write this, I can reach over and touch my daughter's face - because I am still here; because I found my lump in time. In the fall, I took my daughter to school, as she started first grade, and watched her go in and find her way. And I was there waiting for her after school- because I am still be here, because of early detection. I wonder, how many other young women lost the opportunity to watch their children bloom and grow - learn to talk, walk, read, ride bikes, tie their shoes, go to their first day of school and will never see their children grow up to be men and women - because of lack of awareness.
It is easy to play the numbers game when it is not personal, or when those opposing it are fighting in some way to maintain the status quo, some sort of power or control over the "way things are". However, times are changing; and as for those of us who are on either side of the statistic pool, it is an easy decision - we are here because of early detection or a life was lost because of a lack of it. The EARLY Act is necessary - it is not an option. Young women's lives and futures depend on it.
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