We always talk about the 8 things to look for to identify breast cancer. But what do you look for to identify the BRCA gene? Is there a barcode somewhere? Perhaps a sign on your forehead. No. You look around you. Even the males in your family can give you an indication that you might need to be tested. I’d like to introduce you to Karen, who has the gene and started the BRCA Sisterhood. She learned some lessons along the way, such as It is best to research all of your surgical options. We recently asked her some poignant questions about being BRCA positive. This is definitely information worth sharing:
1. How did you know to get tested for the BRCA gene?
My father approached me 6 years ago because his first cousin was diagnosed with ovarian cancer. He told me that he was waiting for test results for a genetic test to see if he would be at high risk for certain cancers. I knew that his mother had died young but I never knew of what. I found out it was ovarian cancer as well. Once he tested positive for the mutation, I made an appointment to go for the test the next week.
2. What was the hardest thing about testing positive for the gene?
The hardest part of finding out I was positive was trying not to think that every ache and pain was cancer. My dad’s cousin waited too long to find out about the mutation and they found her cancer during a risk reducing hysterectomy. All I could think of is that I would suffer the same fate. Waiting to get my surgery dates was extremely hard. My body parts felt like ticking time bombs and took over every waking thought.
3. How did you choose your doctors and surgeries?
I live in Montreal Canada and we thankfully have medicare. I met with a genetic coordinator at the cancer prevention center at the Jewish General hospital and they gave me options of a few doctors. My ovarian oncologist (even though I never had cancer) was the head of the department and very well respected so I considered myself lucky that he was willing to do my surgery.
In regards to breast surgery, I was given the option of seeing a few plastic surgeons and I went with the first one I met. In hindsight, I should have listened to the advice I was given and gotten a few opinions because as it turns out, this doctor was not able to fix my complications from reconstruction and I ended up going to a new plastic surgeon (who I researched this time)
4. We love that you started this group for women. How does it help you to talk to others with the BRCA gene?
I started the BRCA sisterhood 5 years ago with a friend, Teri, who I met online while searching for others to connect with. I needed to talk with others going through the same thing I was. I needed to connect with others who knew the stress I was feeling. Someone who got it. When dealing with the BRCA mutation, it is very hard to explain to others that it feels like your body is plotting against you. Having a support group of other BRCA mutation carriers who are dealing with the same concerns really helps to not feel alone. Many BRCA mutation carriers feel judged by others who don’t understand why they are making the choices they are making. Not feeling alone and having others to talk to makes the journey much less scary.
5. What should all women with the BRCA gene know?
If you have tested positive for a BRCA mutation it is important to know that you are not alone. Although risk reducing surgeries are options for some, it is not the only way to deal with a BRCA mutation. Screening is an option for some, especially those women who are young and are not ready to make any decisions. There are also chemo prevention drugs which some women chose to take. It’s important for BRCA gene carriers to know that there is no right way to handle things, just what is right for each individual person. I would also suggest that if you have tested positive for the BRCA mutation, reach out, find a support system, no one should feel alone.
The BRCA sisterhood is the largest private group on Facebook with over 4400 members and growing daily. Want to connect with Karen?
Facebook: BRCASisterhood Twitter: @KarenBRCAMTL
Instagram: KarenLazarovitz_BRCA
