How to Rock Back at Breast Cancer

Stephanie Robin, 41, hasn't let breast cancer stop her from rocking out. In fact, you might say the Boca Raton mother of two is rocking even harder these daysbecauseof breast cancer.

As a result of her own fight with stage IV metastatic breast cancer, Stephanie Robin has become a powerful role model and advocate. With the help of her friend Elizabeth Weprin, Robin founded THINK PINK, a breast cancer organization with two central missions: to raise awareness for early detection through genetic testing for the breast cancer gene (BRCA) - and to raise funds for screening, treatment, and research.

Last weekend, THINK PINK held their 2nd Annual THINK PINK ROCKS charity concert. Presented by Steve Rifkind and SRC/Universal Records at the Mizner Park Amphitheater in Boca Raton, FL, the event featured performances from hot recording artists like Akon, Shontelle, Melanie Fiona, and American Yard. But the real music to Robin's ears? Four thousand people attended the show, and all the proceeds went to breast cancer organizations.

Here, Robin talks with us about being a cancer survivor, the concert, and her website's new awareness campaign, "Click to Be Counted."

Can you tell the story of how you got the breast cancer diagnosis?
My son saved my life. He is my angel. In October 2003, my regularly scheduled mammogram was clear. In April 2004, I was playing on the couch with my son Coby, who was four at the time, when he accidentally kicked my left breast. Days later I was still in pain, and felt a lump where I had been kicked that I had not noticed before. I went to see my primary physician, who was certain it was just a hematoma. To be sure, she sent me for an ultrasound, which concluded "most likely a hematoma." Not convinced, she referred me to a breast surgeon for a fine needle biopsy. The next day he called me and said the words that would forever change my life and the lives of everyone around me. "There is evidence of malignant cells." I listened, stunned. Not knowing what to say, I asked, "Is this for real? Should I be writing this down?" And he replied, "Yes. I would like you to come in tomorrow for a core biopsy to confirm."

I truly felt that this had to be a mistake. I was too young. I was a mom. There was just no way that I was going to have to explain to my 2 and 4 year old that they were going to lose their mommy. But this was no mistake. The day after the core biopsy, I got the second call I will never forget. It was confirmed. The cells were malignant. I had stage 2 breast cancer - based on the size of the lump and the involvement of some lymph nodes.

After visiting some of the best doctors in New York (where I'm originally from), I decided to be treated by the fabulous doctors here, and was fortunate to have been led to Dr. Louise Morrell, the director of the women's center for breast care at the Boca Raton Community Hospital. We discussed my family history, and it was then that I learned that there was a gene for breast and ovarian cancer, and that knowing my family history would be so important.

My mother was a 2-time breast cancer survivor. My family history of breast cancer, my Ashkenazi heritage, and diagnosis at such a young age, led to Dr. Morrell's suggestion that I should take a blood test to determine whether or not I was a carrier of the BRCA gene mutation. She explained that by having this information I could make better decisions about the surgeries and treatment options. I had the blood test, and tested positive for the gene. My mother tested positive for the gene, too. Instead of a single mastectomy, I opted for a prophylactic double mastectomy with reconstruction. When my chemo was complete, I had a full prophylactic hysterectomy, which put me straight into menopause.

What's the most current status of your health?
In 2006, the breast cancer re-appeared in my lung, and my diagnosis became Stage IV metastatic breast cancer. After diagnostic lung surgery and a new round of chemotherapy treatments, the cancer was in remission. After 14 months on the new treatment, the cancer again returned to my lungs. In December 2007, I joined a clinical trial study at Memorial Sloan Kettering Cancer Center in New York. I am treated there bi-monthly. As of July 2008, the tumors in my lungs have decreased in size by over 90%.

How did you conceive of the THINK PINK ROCKS concert? What about a concert appealed to you?
Elizabeth and I felt that with October being Breast Cancer Awareness Month, there were so many walks and luncheons that it was difficult to attend everything - both financially and emotionally. While the speakers are filled with knowledge and encouraging stories, I often felt emotionally drained at the end of the affair. We knew we needed to change things up. With music being something that people of all ages can enjoy and families can experience together, Elizabeth had the idea of doing a concert. Thus, THINK PINK ROCKS. It was an incredible way to bring a community together to celebrate the strides being made, and to celebrate life and survivors. It was also an opportunity to allow me to reach thousands of people at once.

Elizabeth emailed and wrote to several famous musicians who were either survivors or who she thought might be interested in performing. No one did. It was suggested that she email Steve Rifkind/SRC Universal. He responded immediately. He generously supplies the talent and we are so grateful.

Now that the concert is over, what will you be working on?
We will be focusing on our national campaign, "Click to be Counted." Our goal is to reach one million people by the end of 2009 with the knowledge that the breast cancer gene mutation exists (BRCA), and that there is a checklist to go through to figure out if you should talk to your doctor about being tested. I want people, both men and women, to understand the cancer risks for carriers of the BRCA gene mutation. It means a greater than 85% likelihood of a woman developing breast cancer. It means an approximately 40% chance of developing ovarian cancer. It means a 7% chance of a man getting breast cancer.

Only about 3% of those with the BRCA gene mutation have been tested. That means that between 500,000 and 1 million women are walking around with the BRCA gene mutation - and don't even know it. To me, that is quite frightening.

On our website, there is a tab on the top right corner of the home page that says "Click to be Counted." Clicking takes you to a page that provides information on the BRCA gene. Knowledge is power, and with that knowledge, one can examine their family history and determine if genetic testing is appropriate for them.

To learn more about Stephanie Robin and the THINK PINK ROCKS concert, or to Click to be Counted, please visit thinkpinkrocks.com.

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Reprinted with permission of Hearst Communications, Inc.