What would you do if you were told that you needed surgery, but you weren't even sick?
That was the dilemma facing Sharon Stanley, a Westbury resident whose son attends . Stanley, 53, has the BRCA1 gene, which gives women a higher than normal chance of having breast cancer.
According to Stanley, doctors usually recommend the test for the gene if a patient has two very close relatives with the gene. For Stanley, her mother and grandmother both died of ovarian cancer.
"When my mother was dying, she told me to have my babies and then get tested," Stanley said.
Stanley went to her doctor in 2002, and she proclaimed that she was ready to have her hysterectomy now, but the doctor had other ideas. Now, there's a genetic test, and sure enough doctors found the gene, which led to Stanley getting her ovaries removed in 2003.
"I was told I had a one in three chance of getting breast cancer," Stanley said. "I have had no breast cancer in my family."
In 2008, Stanley's doctor found something on a mammogram, but Stanley says "they thought it was nothing." The doctor referred her to a surgeon, who recommended a bi-lateral mastectomy with reconstruction.
"I was blown away," Stanley said. "Suddenly my odds of getting breast cancer went from 30 percent to 60-80 percent. Normal women only have a 12 percent chance of getting breast cancer."
After three doctors agreed with the initial recommendation, Stanley went to Sloan-Kettering with her husband and father to see Dr. Kenneth Offit, the head geneticist who discovered the BRCA1 gene.
"He told me that I had two choices," Stanley said. "He said I could come back and they'd check me as often as I'd like, but they will find cancer. He said that if I had surgery, I wouldn't have other issues."
Offit told Stanley that only 30 percent of women in such a predicament have the surgery, partly because of the beauty of the female organs.
"I did a lot of research on the internet," Stanley said. "Nobody would say that I'd be in that 20 percent minority that didn't get cancer."
In June of 2009, Stanley had the initial procedure to have her breasts removed. Expanders were put in. Then, in October, Stanley had a second surgery to put in silicone implants.
"I don't regret having the surgery," Stanley said. "I regret that I had to have it."
Stanley says that she was often in pain throughout the process and several months after, but she found support groups that helped her get through the process. One such group, PrevivorsandSurvivors.com, is based on Long Island, and Stanley is now the second vice president.
"It is a local, Long Island group providing support for people with or without a cancer diagnosis," Stanley said. "We are not exclusively helping only BRCA1 women, but having a group so close by has been a huge comfort for me."
Stanley says a co-worker at PS 107 in Queens, where she has been a resource room teacher for 19 years, went through the same surgery ahead of her, and Stanley wants to be the resource for women going through the same issues today.
To contact Stanley, email firstname.lastname@example.org.