One Previvor's Journey With a BRCA Mutation

Genetics play a crucial role in understanding a person’s cancer risk and how to treat the disease. But learning that risk early on, particularly if they have an inherited mutation, may help an individual take preventative measures regarding their health.

Eva Moon, a writer, musician and performing artist, is BRCA1-positive. The BRCA gene puts women at greater risk of breast and ovarian cancers, as well as increased risks of several additional types of cancer. In men, this can increase their risk of breast and prostate cancer.

In an interview with CURE, Moon, who will be presenting on Using Humor to Cope during the 11th annual conference held by Facing Our Risk of Cancer Empowered (FORCE) in San Diego, discussed her BRCA diagnosis and why laughing can be a positive even when the news isn’t always good.

What was it like to learn you were BRCA-positive?

In some ways it was horrible and some ways it was a relief. Waiting for the results of the test was worse than getting the results because there is nothing you can do when you’re waiting. You don’t want to start planning as if you have it because you might not. There is only a 50/50 chance, but once I learned I was positive, there was just a lot to do and a lot of decisions to make. I remember a lot of confusion around that time because there was just so much information that was bombarding me. I never felt like I had enough information even though I had been reading like crazy. It was overwhelming.

How did you come to the decision to have a double mastectomy and hysterectomy? And what would you want other women to know?

Every situation is different about making the decision on what kind of surgery to have. I was older than a lot of women when I found out that I was BRCA1-positive. I was already in my 50s. I had my children and I was in the middle of watching my mother deal with terminal cancer, so it was an easy decision for me. The first thing I wanted to do because of my age was get my ovaries out. I had this three weeks after I got my test results back. Then I looked into the mastectomy and I didn’t want to because I loved my breasts and didn’t want to say goodbye to them, but the risks are just so high.

There’s a lot of options and it’s important to educate yourself. When you first hear that you think, “Oh, they’re just going to lop off my breasts.” But there are a lot of different reconstruction options. Connect with people and try to get the information that you need. You have to decide what’s best for you.

How can parents start the conversation about genetics and cancer with their children?

I have two sons. They are 32 and 34 years old. I talked with them about it pretty much from the start. It wasn’t as traumatic for them as it would have been for a young woman. I really feel for women who have to talk with young daughters about how and when to test. But I encourage people to be open and discuss it.

You did a career switch. What advice do you have for someone who may want to do the same following life-changing news?

Finding out that you have a mutation or that you have cancer, it really changes your perspective on life. I think I’m not alone in feeling much more focused about what kind of purpose I want this new section of my life to have. I had a career, but it didn’t feel connected to what I wanted to say. I didn’t want to spend the time I had left doing something that I wasn’t passionate about. My husband was wonderfully supportive of my efforts to turn my experiences into art. One of the gifts of going through something like this is that you have the opportunity to really think about that it’s not going to go forever. You have a limited amount of time on this earth and it makes you aware of it.

Why is humor an important part of the cancer journey?

Focusing on humor in the context of BRCA and cancer happened very early on. When I got my test results, I was dealing with the news, my mom’s illness and the uncertainty of my husband’s job. I couldn’t find anything to laugh or smile about at that time. I was chatting online with a friend of mine who was trying to cheer me up and he wrote a limerick and sent it to me. I didn’t laugh at that moment, but it lightened my mood. I wrote one back and then we kept sending them back and forth. I was actually laughing. My situation was still going on and I was still stressed, but I had this little break from it. I felt lighter. It was such a relief to have this break from the tension and I wanted to share that. I had joined the FORCE online message boards and I was afraid to post the limericks at first, but then cautiously posted something. The response was instant and 100 percent positive. Person after person said, “I hadn’t smiled in so long and didn’t realize how much I needed to.” That experience convinced me that I needed to do more of that.