This article originally appeared in the Dallas Morning News, April 2, 2019.
By Mary Jacobs, Special Contributor
Information is power. It can also force wrenching decisions, like the one Kim Horner faced 10 years ago when she learned she had the BRCA2 genetic mutation, linked to a high risk for breast and other cancers.
Horner, 51, elected to undergo preventive surgeries to remove her ovaries and later her breast tissue. She chronicled her story in Probably Someday Cancer: Genetic Risk and Preventative Mastectomy (University of North Texas Press, $22.95). The book, published in February, won the top prize in the book manuscript competition at the 2017 Mayborn Literary Nonfiction Conference at the University of North Texas.
Horner, who worked as a journalist for 21 years at newspapers including The Dallas Morning News, spoke with special contributor Mary Jacobs about her experience.
My grandmother and great-grandmother both died of breast cancer in their 40s. I started getting mammograms in my 30s. I knew I was at high risk but never worried about it that much.
About 10 years ago, at a routine mammogram, I filled out a questionnaire to evaluate my risk and was advised to take the BRCA test. I had never even heard of BRCA. I decided, if I did have this really high risk, I wanted to know. I never thought I would test positive for it.
Given the positive BRCA2, what were your chances for developing breast cancer?
That’s one of the problems. You don’t know, exactly. Depending on which study you read, your risk of developing breast cancer is anywhere from 45 to 84 percent if you don’t do any interventions. There’s also a significant chance of developing ovarian cancer or pancreatic cancer.
What led you to choose the surgery to remove your ovaries, and later, a double mastectomy? Did you consider other options?
In 2009, right after I tested positive, I underwent surgery to remove my ovaries. I saw several doctors who were pretty adamant in saying, “You need to do this sooner than later.” The problem with ovarian cancer is that there is no reliable way to detect it.
However, I waited until 2016 to do the double mastectomy, after doing surveillance only for several years. They did a mammogram once a year and then a breast MRI six months later. The MRI picks up any kind of spot. I went through so many biopsies and false alarms, which was so anxiety-provoking.
I did not want to have a double mastectomy. I wrestled with questions like, “Is this really necessary? What if I do this and I was never going to get cancer anyway?” Then I researched my family history and found many instances of ovarian cancer and pancreatic cancer, in addition to the breast cancer that killed my grandmother and great-grandmother. I realized, this has affected every generation of my family. This is such a high probability that I don’t want to take my chances.
The bottom line for me was: What can I do to make sure I’m around as long as possible? I have a young son. After all my research and talking to multiple doctors, I decided that having a double mastectomy is what’s best for me. It’s also a perfectly good choice to do the monitoring and surveillance only. I didn’t want to take the chance that I might not catch it early enough, but it’s one of the most difficult decisions I’ve ever had to make.
Having had the surgeries, what are you doing now to improve your odds?
Now I’m participating in a study at UT Southwestern that’s looking at MRI screenings to detect pancreatic cancer in high-risk people. I see my doctors regularly. I’m trying to lose some weight — it’s so hard. I started running a couple of years ago. I set a goal to do a half-marathon, and trained with the Dallas Running Club, and ended up loving it. I joined WW [Weight Watchers] last year, and I just try to watch what I eat. I have a kale smoothie every day.
Going through cancer treatment, I realized that there are far fewer clear-cut answers than people assume. Treatment decisions are usually more a matter of weighing the odds. Did you experience that?
I thought that, too. I used to think, “You have a diagnosis. You go to a doctor. There’s a clear plan of action.” I realized after consulting with multiple doctors that it’s more of an art than a science. There’s a lot of different treatment paths that you can take. It can be very confusing and difficult to know which one is best. With the BRCA mutation and the conflicting research that’s involved, I was overwhelmed and very confused.
I learned to read medical journals, be my own advocate and figure out what was best for me. You have choices. You have to make a decision based on what’s best for you. No doctor will tell you you should get a double mastectomy. It’s up to you and what you think is best. It drove me insane! I went to several doctors hoping someone would just tell me what to do. I’d even ask, “What would you do if it was your wife or mom?” It’s very tough to know what’s best. There’s not so many certainties.