By Anna Kheyfets

Part 3 - What does this mean for ME?

In part one of this series, you learned about BRCA genes and why someone with a family history of cancer, like myself, may or may not choose to get tested. In part two, you learned about possible results of a BRCA genetic test. In the third and final installment of this series, I explore what BRCA testing meant for me.

Many genetic mutations are inherited from your biological parents. Finding out that a family member, like your mom, has cancer can be devastating and it may take time to decide whether it is right for you to go through testing. Being tested allows you to work with your doctor or genetic counselor to create a personalized plan that allows for early detection and care. It gives you the option of making changes in your life now to help prevent cancer in the future if you find you have a higher risk. However, you can also make proactive changes without choosing to test.

The long(er) answer is, if you are thinking about testing, take your time and do your research. Advocate for yourself. Speak to a genetic counselor to help assess your risk, your options, and to better understand the process. The decision to be tested can be emotional with many of the “what ifs.” When being tested, I began to fill with questions about the risks of genetic testing, like:

• What would my life look like if I test positive for a cancer gene?
  
• Would I have to have my ovaries, uterus, or breasts removed? When? 
  
• If I have these surgeries, what will that mean for my body image? 
  
• Can I have children? Will they get this gene?

I had all these questions, and more, when I was tested. I kept envisioning future conversations with partners, friends and family should I find out that I have the gene. I asked my doctor what impact this test would have on my physical health, but also my sexual and mental health. She reassured me that it was in my own hands, and regardless of what the results said, I would have support and options for what to do next. If the results came back positive for the genetic mutation, I would have the option to wait until I was older to consider some preventative measures.

Preventive measures such as breast, uterus and ovary removal can affect your body image and sex life. These are your sex organs—of course, sex will look different without them! A WomanLab blogger once told us that, “the peace of mind regarding my healthy future far outweighs the persistent body image issues that accompany waking up in a new body that looks and feels very unnatural.”

When considering genetic testing and preventive treatments, it is important that women have information about what changes these health-preserving treatments might cause and the ways in which negative side effects can be treated.

Ok, I thought, I am ready for whatever comes my way. But here’s the thing… I don’t think I was. I wasn’t prepared for my heart beating out of my chest when I went back in to get my results, but I also wasn’t prepared for the wave of relief that washed over me when I learned I didn’t have the gene mutation.

As it turns out, I did not feel equipped for the possibility to learn that I did have the gene. What would I tell my mom? My sister? Would I pass the gene mutation onto my future kids? Will I even have kids? Luckily, my results came back with no indication of BRCA gene mutations so I did not have to have all these questions answered. It was a relief, but also only a small aspect of the many factors that build up and determine whether I will have cancer in the future.

Ok, so you’ve done your research and maybe I’ve piqued your interest. If you feel ready, talk to your doctor and a genetic counselor about if genetic testing is right for you.

Not sure where to get started? The Sarnoff Center offers access to a genetic counselor who can answer questions, provide guidance, and help each individual identify an appropriate clinical resource if needed. Contact us at (312) 357-4718 or GeneticScreening@juf.org for more information.  

Anna Kheyfets is a senior at the University of Chicago. She will be graduating March 2019 with a degree in Anthropology and Biology. She is an avid reader, writer, New Yorker, and proponent of women’s health and rights. She has been an intern at WomanLab (www.womanlab.org) in the Lindau Lab at the University of Chicago since January 2018, where she has contributed to blog content, analytics and the other research efforts. What’s next? After graduation she will be continuing her research in Women’s Health back in NYC during her gap year before she begins medical school and is looking forward to some lengthy subway rides.