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| Photo credit to Christopher Everhart |
Twice a year I sit in a hospital waiting room with women twice my age. I’m there because I have a gene mutation known as BRCA1. Because of this mutation, my risk of breast and ovarian cancers is considerably higher than the average woman’s. I wonder if the women who sit in front of me are walking through my deepest fear. Do they have cancer? Have they had cancer? Are they just being screened like me? Are they wondering what I’m doing here? They must think I have cancer, being here so young. They filter us though two different waiting rooms. The main waiting area is where all of the women sit with a significant other. The other room, where we wait after we’ve changed into our hospital gowns, has coffee, age-appropriate magazines, and a television projecting daytime talk shows. Twice a year I sit and flip through Country Living and wait my turn for my MRI or mammogram…
Welcome to a glimpse into my life, my fears, and my hopes for my future years, as a carrier of the BRCA1 gene mutation. Read on to find out what the BRCA1 gene mutation is, how it affects women (and men), how it affects me, personally, and what can be done about it.
BRCA1 is a human gene that produces tumor suppressor proteins. These proteins help to repair DNA. When the gene is mutated, or altered, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer.
What that mouthful means is that because my BRCA1 gene is mutated I have an increased risk of breast and ovarian cancer. By the age of 70, I have a 55 to 65 percent chance of developing breast cancer, and a 45 percent chance of developing ovarian cancer (these percentages seem to fluctuate with sources. I have always been told 80 percent chance by time I’m 80 by my doctors. Cancer risks increase with age). In comparison, about 12 percent of women in the general population will develop breast cancer sometime in their lives and 1.3 percent of women in the general public will develop ovarian cancer sometime during their lives. It is important to note that there is also the BRCA2 mutation which increases one’s breast cancer risks, although not as significantly as BRCA1: comparably a 45 percent chance by the age of 70. Additionally, carriers of the BRCA1 mutation tend to have more aggressive, faster growing cancers.
As for men, research shows that if they are carriers they have escalated percentages of breast and prostate cancers.
Heavy, right? I think it’s a difficult thing for people who do not have a condition such as mine to understand the impact it has on my life. It still is a difficult thing for me to understand. It’s not something that can be seen. It’s not like I am currently ill. It’s like an invisible force that has a control over my life- or at least my mind at times. It’s a strange thing that I feel like I am supposed to be optimistic about. I’m supposed to live my life and not obsess about it, but still be mindful of it. The older I get, the more difficult that balance proves to be.
When I saw my gynecologist last year for my annual, we spoke a bit about BRCA1. Before each exam he greets me in his office and we sit down at his desk and chat. During our conversation, I reached for some reassurance that if I continued to get tested, stayed on schedule with it, and did my home breast exams, if there was ever anything to find we’d find it early and take care of it, and I’d be good. He sat silently and let me finish my declaration. Then looked down at his hands folded neatly over my file, and took a breath. “I had this patient, younger like you, BRCA1 carrier as well. And we did find a lump. Early, very early. As early as it could have possibly been found. And it just didn’t end well.”
I stared at him for a moment. It felt like he just broke my heart. Broke my person. Broke things I really thought I could control. It is still one of the hardest things I’ve ever had to hear. But it is also reality. The doctor wasn’t trying to scare me; he was trying to be honest. To really convey that even if I do the biyearly screening that I’m supposed to be doing, it may not ever be enough. I think that was the moment that it all truly set in. It took ten years, but it finally set in.
In my early 20s, my doctor visits consisted of talking about screening. Now, at 31, they consist more of talking about surgery. There are two preventive surgeries that can be performed: the first, a bilateral prophylactic mastectomy, the second, a prophylactic oophorectomy. The former involves removing both breasts, which may lower my risk of breast cancer by at least 90 percent. The latter, the removal of the ovaries, may lower my risk of ovarian cancer by 70 to over 90 percent. Additionally, it may lower my risk of breast cancer by 50 to 70 percent.
It seems like surgery is the way to go, right? My risks would be lowered substantially. This is where things get complicated. This is where my age has been coming into play more and more. I want to have children. I want to be able to breastfeed those children. I want to be able to continue on with my current relationship without pressuring any of those points. But the pressure on me grows heavier each year. Doctors recommend having the ovaries removed between the ages of 35 and 40 (or after one is done having children). So, just for a moment, let’s go into my neurotic head:
I’m 31. The earliest doctors are recommending is 35. Ok, so four years (really like three and a half years). I would ideally like to be married before I have children. I’m not engaged. Crap. Ok, ok, say we got engaged tomorrow and had a wedding in a year or so, maybe I’m 33 by then? Ok, then we start to try to have kids. What if there are complications?
I could go on. And on.
Right now, my reality is that this mutated little jerk of a gene is putting pressure on something that I already feel pressure about due to my age. It just amplifies things and puts even more restrictive time limits on potential life events (none of these time limits are exact, they are all recommended time lines for a carrier. Recommended being the key word).
I try to remind myself that I do not have to tackle all of these things right now. I do my screenings, I exercise regularly, I eat well, and I don’t smoke. But deep down I’m just preparing myself for what is to come in the relatively near future; in a small way preparing myself for the chance of having cancer one day.
Some days BRCA1 feels like this looming shadow. It follows me around, dictating to me in small ways. Other days, it never crosses my mind. I have tried to make a staunch effort in the 11 years that I’ve known about it to not let it run my life and to realize that obsessing and imagining every worst-case situation is in no way helpful. That is not to say it doesn’t happen.
Notes & References:
It is important to remember that breast cancer risk is not exclusive to the BRCA1 club, and you should be having annual screenings. It is recommended that women have an annual mammogram starting between 40 and 45 (Ed. Note: The National Comprehensive Cancer Network recommends routine mammography for women starting at age 40 and the American Cancer Society recommends starting at age 45 - See more at:
http://ww5.komen.org/BreastCancer/BreastCancerScreeningforWomenatAverageRisk.html#Mammography-for-women-ages-40-to-49).
Need a breast exam or mammogram? Start here...
Komen’s How to find a Mammogram flowchart:
http://www.komenmichigan.org/mammogram/
Your local Planned Parenthood Health Center offers breast exams and mammogram referrals too.
https://www.plannedparenthood.org/health-center/MI
To find out if you qualify for a free or low-cost mammogram and pap test, and where to get screened, call the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) in Michigan at
1 (800) 922-6266.
Listen to:
http://www.npr.org/sections/health-shots/2015/09/22/442343578/surgeon-seeks-to-help-women-navigate-breast-cancer-treatment
Read:
http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q1
http://www.npr.org/books/titles/442343703/the-new-generation-breast-cancer-book-how-to-navigate-your-diagnosis-and-treatme
Reference:
http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2
http://ww5.komen.org/BreastCancer/BRCA1andBRCA2.html#riskloweringoptions
~By Jenna Stanek
This past weekend we had the honor of attending Colorosity at the Michigan Science Center. This event helped raise funds for the center while entertaining guests with colorful hands-on activity stations as well as live painting and performances. Attendees also had a chance to check out some of MiSci's regular exhibits and their newest exhibit, Toytopia. (Keep an eye out for our look inside this awesome exhibit soon!)
