May 15, 2013 Updated: May 15, 2013 at 4:00 pm
"I am not mad, I am not sad, I am not a victim. I am ready to take my inner passion and direct it to awareness." - from Marjorie Noleen's blog
She calls herself BRACgirl, a nod to the genetic mutation that led to her having a double mastectomy and hysterectomy, even though no speck of cancer had been found in her body.
But Marjorie Noleen of Colorado Springs knew the astronomical odds of getting breast cancer and, possibly, ovarian cancer, because of the BRCA2 mutation. And she learned she wasn't a good candidate for any less invasive measures.
So on July 25, Noleen went into the operating room and let surgeons remove parts of her body to spare her from the same cancer that hit three of her aunts.
"This is how I approached it - I had the double mastectomy and hysterectomy on the same day," said the 35-year-old, who is director of marketing and events for the Better Business Bureau and is working on a master's degree. "From a physical standpoint, I do not have any regrets."
Few people find themselves in Noleen's situation. Only about 10 percent of breast cancers are thought to be genetic, said Dr. Laura Pomerenke, a breast surgeon at Memorial Hospital, and not all of those are from mutations in the BRCA genes.
But when someone is hit with the mind-bending news that she has a genetic mutation with a 60 percent to 85 percent risk of breast cancer and an increased risk of ovarian cancer, she may have to decide whether to take the ultimate preventive measure and get a double mastectomy and hysterectomy.
Not everyone does. Elena Strait, a certified genetic counselor at the Penrose Cancer Center, said about 10 to 12 people like Noleen come in each year, untouched by breast cancer but at high risk of getting it because of the gene mutation, which can also show up in men.
"I would say that so far, a fairly small number - less than half, maybe a quarter - decides to undergo prophylactic surgery that we know of," Strait said. "Very few do it immediately, because we may be diagnosing women in their early 20s who are still in their reproductive years."
Pomerenke said not every patient with the mutation is automatically destined for surgery. Some can put it off because they're candidates for more frequent scans, where doctors can keep a close eye on their condition and take action if tumors appear.
"They go to our high-risk clinic to talk about the options," Pomerenke said. "We discuss additional screening. We talk about prophylactic surgery - both breasts, as well as the ovaries - and help the patient decide the best approach for them."
For Noleen, the only choice was the most dramatic.
"It was difficult, but my husband and I were also very resolute when we made our decision," said Noleen, who had never heard of BRCA until January 2012, when she learned about it from her aunts. One aunt had noticed how much breast cancer ran through the paternal side of Noleen's family, and after a number of them underwent genetic testing, they discovered they had the mutation.
In March 2012, Noleen underwent the test and got the results in April, two months before she and her family would be displaced by the Waldo Canyon fire.
"I still had disbelief," she said. "I never had strep. I was healthy. I just never thought it would happen to me."
In addition to the surgery in July, Noleen had to go through several reconstructive surgeries. She had her last procedure Monday - a tattoo to replicate a nipple.
If the surgery changed Noleen physically, it also made her something of an activist in BRCA education and support. She became the Colorado outreach coordinator for FORCE - Facing Our Risk of Cancer Empowered, a national nonprofit with a mission that "no one should have to face hereditary breast and ovarian cancer alone." She has a blog, http://bracgirl.com, does face-to-face and group support sessions and holds fundraising for the cause.
"I'm committed to helping other women out, and the one thing that helps drive me: I have two children," she said. "They both carry a 50 percent risk of carrying this gene. By the time they're old enough to decide whether to be tested or not, hopefully there will be changes in research and development. BRCA was discovered in the '90s; imagine what we can do in 20 or 30 years."