I was very excited when I got the email last July from Kat Werner inviting me to be part of a YSC project called the Research Think Tank.  The email explained that in 2001 YSC had convened a “Medical Research Symposium on Young Women and Breast Cancer,” which resulted in a white paper that set an agenda for the future direction of research in young women.  Now YSC was re-evaluating the state of the research, in order to identify what “holes” still existed in breast cancer research pertaining to young women.  Kat invited me to be a part of the Think Tank, and I jumped at the chance.

You see, despite my degree in English and my almost total avoidance of science courses in college, I have become a medical science geek. I visit websites that report new medical developments.  I have attended the San Antonio Breast Cancer Symposium for the past two years, and I have reviewed grant proposals for the Department of Defense Breast Cancer Research Program.  So this self-described science geek was thrilled to be invited to be a part of the Research Think Tank that would be a collaboration between advocates and researchers to set a revised agenda for young women with breast cancer.

In preparation for the conference itself, Think Tank advocates were divided into work groups, and each work group was assigned a broad area on which to focus.  I was assigned to the Treatment work group.  This group focused its efforts on analyzing research concerning surgery, chemotherapy, radiation, and endocrine therapy specifically in young women and then identifying important issues which had not yet been studied.  What struck my group most as we were exploring the existing research is the total lack of a uniform definition of what constitutes a “young woman with breast cancer.”  Many studies appear to use menopausal status as a surrogate for age, often with no indication that anyone has confirmed the patient’s actual menopausal status.  More significantly, of the studies that have classified women by age, there are studies defining “young women” as those under age 35, those under age 40, those under age 45, and—somewhat astoundingly—those under age 65.  Without a common definition of who is a “young woman with breast cancer,” how will researchers ever be able to reach meaningful conclusions on the appropriate treatment for these women?

Which leads me back to why the upcoming YSC Research Think Tank is so important.  A study presented at last year’s San Antonio Breast Cancer Symposium appeared to show that breast cancer in women diagnosed at age 40 or younger responds differently to chemotherapy—almost as if it is a different disease.  Yet this disease is not being systematically studied in this group of women. This is a perfect example as to why we need to focus researchers to help make a measurable impact in the lives of young women affected by breast cancer.

While I have been looking forward to the Think Tank meeting since last July, my excitement has been somewhat dampened by the tears I’ve shed since Kat’s sudden death last September.  Kat had a remarkable talent for cutting through the scientific doublespeak and getting to the heart of the issue or the hole in the science.  She respected the researchers, but she also commanded their respect due to her depth of scientific knowledge and her ability to clearly articulate the survivors’ perspective.  She was never intimidated by the researchers she met because she believed we could only truly find a cure if advocates and scientists worked together.  While I know that others had a part in initiating this Think Tank, it truly reflects Kat’s heart and soul.  It hurts to know she won’t be physically present at the conference she planned to lead, but I hope that I, along with all the advocates and scientists, can channel her spirit as we work to outline the necessary research strategy it will take to improve the lives of young women affected by breast cancer.

When I got diagnosed with breast cancer during the final month of my first pregnancy, hormones took on a new importance in my life. My doctors worried the estrogen flooding my body during pregnancy had fueled my tumor’s growth. They warned that chemo might shut down my body’s reproductive hormones and my ability to have another child.

Two years later, I began monitoring those hormones and was overjoyed when I learned I was pregnant with a little girl. Now, 10 years after my diagnosis, I am considering having my ovaries taken out in order to remove these engines of estrogen production—even though I know I can’t take hormone therapy to help me through the throes of menopause.
I work hard to stay healthy and protect myself from cancer triggers. But through my work at an environmental organization, I have learned not all hormone-related threats come from inside our bodies. Some come from chemicals found in the air we breathe, the water we drink, and the consumer products we use every day.  Many of these chemicals are known to mimic estrogen, and disrupt the development of breast tissue. Almost none of them are regulated by the government.

This has potentially grave consequences for women and girls. Mammary glands are the only body part that changes structure over time, and this extended development is guided by hormones. When toxic chemicals disrupt this delicate form of communication, the breast can get the wrong message and start restructuring in ways that lay the groundwork for cancer.

Take Bisphenol A (BPA). BPA is a chemical found in plastic bottles, canned foods and baby toys. It is so common that more than 90 percent of Americans have residues of the chemical in their bodies, according to the Centers for Disease Control. It is also a synthetic form of estrogen and has been shown to cause normal breast cells to behave like cancer cells and has been linked to prostate cancer, lower sperm counts, and early puberty.

Polycyclic aromatic hydrocarbons (PAHs) are another group of chemicals known to mimic estrogen.  PAHs are commonly found in soot—air pollution from burning coal, oil and gasoline. Some PAHs have been shown to cause mammary tumors in rats and to interfere with DNA repair in cells. And several epidemiological studies have linked PAH exposure to increased risk for breast cancer in women.

Similar estrogenic chemicals are found in pesticides and weed killers such as atrazine. Atrazine was banned in the European Union because of its potential to harm human health, but more than 75 million pounds are used in the United States every year and atrazine is frequently found in drinking water during growing seasons. Atrazine is a known hormone disruptor, and some studies have linked it to increased risks for breast cancer.

As someone who avoids eating tofu in order to reduce my exposure to estrogen, I find it alarming we are exposed to so many sources of synthetic hormones every day. But the more we learn, the more we can protect ourselves. We can buy organic produce to avoid pesticides like atrazine. We can use cosmetics free of toxic preservatives. And we can heat and store our food in glass instead of plastic. The Breast Cancer Fund has a terrific set of tips for avoiding hazardous chemicals.

But shopping alone can’t reduce all the risk, since we don’t always know where these chemicals may be lurking. There are more than 80,000 chemicals used in the United States, but the Environmental Protection Agency has required only 200 of them to be tested and only 5 to be regulated. It’s time the government stepped in and demanded manufacturers prove their ingredients pose no harm.

I will never know if toxic chemicals contributed to my tumor. But I do know that if reducing the amount of these chemicals in our lives will shield other women from the anguish of this disease, we must start demanding companies clean up their act now.

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Maintaining a regular work schedule after a breast cancer diagnosis can create a sense of normalcy and purpose for many young women. However, learning and understanding your rights in the workplace may feel confusing and unclear. In YSC’s upcoming webinar, S. Beth Stephens, Staff Attorney for the Breast Cancer Legal Project at the Atlanta Legal Aid Society, Inc., will explore these issues and many more. Ms. Stephens previously guest blogged for YSC on the topic of Navigating Breast Cancer and Employment.

Webinar Details:

Title: Rights in the Workplace: How to Navigate My Breast Cancer Diagnosis

Thursday, January 31, 2013: 7:30-8:30 p.m. EST

Registration link:

https://www1.gotomeeting.com/register/740114832

Speaker: S. Beth Stephens, Attorney at Law; Atlanta Legal Aid Society

This webinar will cover a basic overview of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA). Additionally, we will answer the questions:

- What are my rights and the rights of my caregiver to take time off of work?
- What do I have to disclose to an employer about my breast cancer diagnosis
- What are my rights when returning to work?
- How do I ask for accommodations to be able to do my job after a breast cancer diagnosis?