A Mother's Decision
Mary Greeley's Genetic Education Services are helping women at risk for cancer.
By Kelly Roberson and Jason Mortvedt
Hear the emotional, personal story of this Ames mom who decided to get genetic testing after her mother, grandmother and sister all had cancer.
To understand why Sarah Moore did it, you just need to look at Josiah James and Genevieve.
They are her two kids and all the reason she needed to make the biggest health decision of her life.
The reason she had to make the decision was genetic, specifically a gene called BRCA.
BRCA1 and BRCA2 gene mutations account for 5 to 10 percent of all breast cancers. They are also the cause of 15 percent of ovarian cancers, according to the National Cancer Institute. But with the advent of genetic identification and preventative surgery, there’s promise to extend the lives of millions of women—including Sarah Moore’s.
Filling in the Blanks
Adopted along with her two sisters into the same family, Moore, 40, knew little about her birth family and its health history—only that a grandmother had died early from ovarian cancer and her birth mother died in her 40s, most likely from ovarian cancer, too. “When we were younger, we would make light of it—‘I wonder if any of us will make it to 50,’” says Moore, who lives in Ames and lectures at Iowa State University. “But as we got older and got closer to 40 it became serious. We all felt it was our fate.”
That premonition seemed especially ominous several years ago, when her older sister was diagnosed with ovarian cancer and tested positive for the BRCA1 gene.
The BRCA gene mutation indicates a much greater risk of developing breast cancer. It doesn’t, however, determine any certainty of cancer or a likely date that cancer may develop, although there are probabilities. Those probabilities are what came into play when actress, director, and human rights advocate Angelina Jolie chose to undergo both a preventative mastectomy and hysterectomy. Her well-publicized decision and openness to discuss education and empowerment have been a lightning rod for women looking for guidance in making their own health choices.
Taking a Test
The information from her sister came at an emotional time for Moore: After giving birth to one child (Josiah James, now 8), Moore and her husband Shane had struggled to conceive a second child. Although her doctor pushed her to get tested, Moore wanted to wait. She became pregnant for a second time, and after daughter Genevieve was born in 2013, Moore followed through with the gene test.
“I felt like it was a win-win situation for me: If I didn’t have the gene that would be great, and then I wouldn’t have to be so worried about it,” says Moore. “But if I did have it then I’d do all the surgeries and do what I could to avoid it. And then I’d feel better as well.”
Even so, the news that she had tested positive was upsetting, but there was no question Moore would have the surgeries. “It was a no-brainer decision for me,” she says.
Sorting Through Information
A genetic diagnosis such as Moore’s is complex: There are risks and rewards and possibilities and uncertainties. It can be confusing and overwhelming and stressful for women and their families, which is why the Genetic Risk Education Service at the Cancer Resource Center at Mary Greeley Medical Center is so valuable.
There, staff help patients understand what a cancer genetic syndrome diagnosis—most typically for colon, breast, or ovarian cancers—means.
“We do a lot of education and counseling,” says Mary Ellen Carano, RN, OCN, Cancer Resource Center coordinator. “Really, all cancer is genetic. It’s DNA damage, and how that damage occurs is what we’re really looking at, and whether it is something you were born with that puts you at high risk to get another cancer.”
In November 2013, Moore underwent a hysterectomy. Her decision to undergo a mastectomy—which she had the following April—took a little more soul-searching. “I was not looking forward to it, and I was worried about how I would feel about it and what I would look like,” says Moore. “It was definitely an emotional process. And I was glad I
had a lot of time to work through it.”
Finding More Support
For Moore, working through those choices involved a network of support, not only through counseling but also at a BRCA support group with other women who received the same diagnosis. Those members include Ames resident and author Fern Kupfer.
“When you have something like this it’s devastating on a whole lot of levels,” says Kupfer. “It’s good to be with other people who get where you are. And women especially are good at talking about this. We don’t really need a syllabus.”
Many people questioned Moore: Why would she undergo such drastic surgeries? The insinuation was that she and others like her were doing it just because Angelina Jolie had.
“I would look at them and say, ‘You know, have someone tell you that you have an 85 to 90 percent chance of cancer—but you can do something about it,’ ” says Moore. “Why would you not do that?”
Hope for the Future
That cloud Moore carried with her all these years has lifted. She credits the knowledge, the resolution of her testing, her faith, and her family for getting her through the long hours, the surgeries, and the recovery.
Ultimately, though, it was a decision she made for the future—mostly for her children. “I wanted to be around a long time. I’ve heard other stories of mothers dying with young kids and I just thought, ‘I don’t want that to be us,’” says Moore. “I’m down to less than 5 percent chance—the same as the general population—so that makes me feel happy. It makes me feel hopeful that in the future for my children it’ll be even better. Even if you do have the gene, you can do something about it—and then you feel free.”