The Tribune

By AVA TURNQUEST Tribune Staff Reporter aturnquest@tribunemedia.net CANCER advocate and survivor Stephanie Siegel will stop at nothing to lower the alarmingly high incidence of breast cancer in the Bahamas. The wife of former US Ambassador to the Bahamas Ned Siegel has dedicated her life to facilitating research, improving access to treatment, and increasing awareness of the disease that affects Bahamian women at the world's highest levels. Sharing her whirlwind cancer battle with The Tribune yesterday, Mrs Siegel underscored the critical need for genetic testing, universal treatment protocols and greater patient responsibility. Nearly 1,400 people took to the starting line Saturday morning for the Susan G Komen Race for the Cure, which is on target to raise $100,000 in donations for cancer research in the country. The race is the world's largest educational fundraiser for breast cancer, and its Bahamas course is the result of collaborative efforts initiated by Mrs Siegel. Witnessing her dream realised for the second consecutive year, Mrs Siegel said the powerful message of solidarity was overwhelming. "The survivors standing up on that stage, you could just feel the thankfulness, you could feel the hope, it's really hope," she said. "Hope for the future that no one else on this island would suffer the way they suffered because they went through it earlier than the women who will follow." Mrs Siegel, a board member for the Susan G Komen for the Cure Advocacy Alliance, said: "I think that holds true for any woman that has been diagnosed, all we want to do is help the next woman in line. If I could help just one woman avoid the pit holes that I myself went through, I would feel accomplished." After three lumpectomies, a subsequent mastectomy, Mrs Siegel is no stranger to the breast cancer fight. She was first diagnosed on her 55th birthday during a routine mammogram, just months before her husband became a diplomat to The Bahamas in 2007. The couple had high expectations for their new life in The Bahamas, and the shocking news of not one, but five spots was incredibly disheartening. "We saw one spot, then all of a sudden the one spot became five spots," she said. "There were three spots on my left breast and two spots on my right breast. My doctor decided on a lumpectomy on my left breast." After three lumpectomies, Mrs Siegel's doctors decided that the two spots on her right breast would not have to be removed. "The first opinion was that it was suspicious and needed to come out, the second opinion said that it didn't need to come out." She added: "So I learned a really tough lesson, when you get good news and bad news, go with the bad news and run with it." Less than two months later, Mrs Siegel noticed a spot on her face that would prove to be skin cancer, a find she credits to divine intervention. "It's a process, finding your doctors, finding the right doctor, making a decision," she said. "I didn't go to medical school and now after a quick course on breast cancer, now all of a sudden I was faced with a quick course in melanoma." Determined not to let the disease hamper the former ambassador's transition to his new role, Mrs Siegel travelled with her husband to The Bahamas in November to get established before returning to New York for face surgery. Despite her prior medical challenges, Mrs Siegel said her first Christmas in The Bahamas was a "magical experience". "Every time I'd go back and they'd find something wrong with me what helped me to get on my feet again was knowing that I was coming back (to The Bahamas), and that I wanted to come back here, and that I was coming back to people I felt really cared and really loved me," she said. "That kept me going. I had a purpose and a reason to come back, to get out of bed every day and I wanted to get dressed and I wanted to get out there, to speak to other women. I wanted them to know that the diagnosis of breast cancer was not a death sentence." Thinking the worst was now behind them, the couple would receive another blow at Mrs Siegel's follow-up screening in January 2008, invasive breast cancer. "I couldn't believe how fast it was, I went from breast cancer, to melanoma, to breast cancer in no time," she said. "You are your own best advocate, you can't do this blindly. This is why I believe in genetic testing, you need to be as armed as you possibly can, you need to have as much information as you can." "In the end, you're not the doctor but this is your life and the onus is on you." Mr Siegel's appointment schedule in Washington coincided with that of Nancy Goodman Brinker, founder and CEO of Susan G Komen for the Cure - furthering Mrs Siegel's belief that no incident is happenstance. "My dream when I was lying in the hotel room after my lumpectomies, because I'd been to many Komen walks and I knew what it looked like, my vision was to see a sea of women in pink shirts, walking over Paradise Island," she said. "I wanted that more than anything else I wanted them to be recognized and I wanted the women of this country to recognize these women and know there was life after a diagnosis of breast cancer." Mr and Mrs Siegel unveiled the Bahamas Breast Cancer Initiative in 2008 and laid the foundations for crucial research into breast cancer in the Bahamas with $300,000 funding from Susan G Komen. Studies revealed that around 23 per cent of Bahamian women diagnosed carry the BRCA1 gene mutation, the highest prevalence out of any population in the world. Of these, around half of the women, 48 per cent, were under age 50. "The Bahamas could actually be a little microcosm for the rest of the world, here you have this small country with a high prevalence of breast cancer, what if you could get to the bottom of what was going on here and then the question would be how findings here would affect the rest of the world. The other driving force was coming upon these findings reinterpret them as quickly as possible and bring those results to the bedside. "We wanted a change in treatment, if there was a change in treatment that would be called for because of these findings." According to published reports, only 12 per cent of American women under 44 years old are diagnosed with breast cancer, while 34 per cent of Bahamian women are diagnosed at that age or younger. As a result, Bahamian women are urged to disregard American breast cancer screening guidelines which state only women aged 50 to 74 should seek testing. Further research is hindered by the availability and high costs associated with genetic testing, which researchers believe is vital to an in-depth study of breast cancer presentation and treatment in the country. Mrs Siegel said the most fulfilling part of her journey has been the knowledge that what started as only a vision has transformed into a mission that has facilitated improvements in cancer treatment for the country. "People sometimes say that must have been the worst time of your life," Mrs Siegel said. "Honestly it was the best time of my life. Who has the opportunity, because of their situation, to turn something that had the propensity to be a bad time in your life into something that is so incredible and so tangible and has influenced so many people." "This influenced a country that I love, with people that I love."