Sitting alone in a cold exam room, half naked and staring at what looks like a giant, boob-squeezing torture device, I'm starting to freak out a little. I just turned forty, and it's time for my first mammogram. Trying to take deep breaths, all I can think about is my friend Christin and what she is going through. If she can get through the cards life dealt to her, then I can get through a silly little mammogram.
The Picture of Bravery
I met Christin Knight in a local moms Facebook group. She was keeping us updated on her quest to remain cancer free after learning she had inherited the BRCA gene from her family. Every single picture she posted was of her with a big smile on her face. I decided I needed to meet her and see what I could learn about her journey.
Of course Christin was happy to share her story with me, so we decided to get together at a local coffee house face to face. At this point, all I know about breast cancer is that it can run in families and that it usually happens to women over forty. I had no idea how much I had to learn from Christin!
Beautiful Christin (27) and her awesome hubby Jeff. "My husband was the bomb, taking care of me and the kids. I was super impressed."
Christin's grandmother and great grandmother both died from ovarian cancer. Medical technology today can now predict whether a woman is likely to get ovarian, breast or other cancers by testing for the BRCA1 and BRCA2 genes. If you have this gene, you are 69%-72% more likely to develop breast cancer and 17%-44% more likely to develop ovarian cancer later in life*. Christin's mom has the gene and decided to undergo prophylactic surgery (mastectomy and hysterectomy) rather than live with the threat of cancer. When the time came for Christin to get tested for the gene, she knew she might have to go through the same thing.
Christin's grandmother, Joyce Bradley, who passed away from ovarian cancer in 2015. She originally tested positive for BRCA in 2011, but did not undergo preventative surgery.
Question and Answer Time
Jess: You have a family history of ovarian cancer going from your great grandmother to your grandmother to your mom having the BRCA gene. What has that been like?
Christin: Both scary and empowering! Luckily today we have tools like genetic testing, mammography, ultrasound, and prophylactic surgery. Medicine is always advancing, so I feel like if I am able to take charge of my health like this today, there is no telling what treatment for this will be like in twenty years! It does worry me knowing that my children could carry the gene mutation as well, but I am comforted knowing that there are several options and it is not a mandatory death sentence like it would have been in the past.
Jess: Even though you knew it was likely, tell us what it was like the day you found out you had the BRCA gene.
Christin: My kids and I had just returned home from the gym. It had been roughly three weeks since I had the testing done, so I knew it would be any day that the results arrived. I was on edge for at least a week, checking my mailbox ten seconds after the mailman drove off every day. When I finally saw the envelope, my heart was pounding out of my chest – it could go either way – I have the gene mutation with several possible scenarios (BRCA1/BRCA2 or a host of other genetic malformities), or my DNA is “clean.” When I saw the line where it says I was positive, so many things went through my brain. I called my mom, crying, and she talked me through it; she was so patient, kind, caring, and listened to my babbling. When my husband got home that night, the same thing happened – I cried and cried. The next day, I called and made my appointments with my gynecologist who ordered the test, and a genetic counselor, so I could get more information and go over my results. Once the appointments were set, a wave of calm came over me, and I was finally ready to tackle this head on.
"[Seeing the results] took my breath away. Suddenly, it was real." -- Christin, upon opening the letter with her BRCA gene test results.
Christin wanted to make sure to be around for her three kids Wiley (4), Finley (2) and Lucy Sunshine (6).
Jess: You told me the cost of the test without insurance is $6100, but recently you posted about a new over-the-counter way to get tested. Can you tell us about that?
Christin: 23andMe has come out with a product where you take a swab of the inside of your cheek, and they will be able to tell you if you have BRCA mutuations. It is NOT a comprehensive test; instead of looking at all possible variants of the gene – there are over 1,000 known to cause breast cancer alone – instead, this test will only test for the three most common variants. This is more of a beginner step; if this test came back negative and you have a family history of breast or ovarian cancer, you should definitely have a full genetic test panel, and subsequent counseling, completed. However, this is a much more cost-effective way to plan for the future is you suspect you have the genetic mutation.
Jess: Your mom has been through this already, did that influence your decision to move forward with your preventative treatment?
Christin: Absolutely! Her (and my) recovery was short – less than six weeks for both of us. Seeing my grandmother suffer through ups and downs, chemotherapy treatments and the recovery from that, hair loss, and finally the cancer spreading to her brain – that was more than enough ammunition for me to pull the trigger on my preventative treatment. Grandmom suffered for four years before the cancer finally metastasized to her brain and took her life. Nothing is worse than seeing your loved one hurt for so long. The doctors made my recovery as smooth as possible; aside from pain that was controlled by a few painkillers, it was so worth being on bedrest for a few weeks.
Christin's mom, Carole Glenn, has been a great help to Christin during her surgeries and helping her through the process emotionally.
Jess: What was the hardest part about undergoing a double mastectomy?
Christin: Relearning how to use my arms. I was like a T-rex with floppy arms. They had to cut muscles attached to breast tissue. I had weeks of physical therapy exercises at home.
Jess: If there’s one thing you can say to all the moms in the Macaroni Kid community, what would it be?
Christin: I can say with a ton of certainty that the anxiety of waking up every day wondering if that’s the day my body begins to grow cancer would have taken so many years off my life. I am able to live my life calmly without worry, for which I am so grateful. I encourage anyone with a family history of breast or ovarian cancer to test for the mutations as young as possible, because your chance of developing breast cancer begins to rise at age 30. Also, be your own advocate! Only you know your body. Keep those monthly breast checks happening, and talk to your doctor about your risks. Arm yourself with knowledge regarding cancer, and it will make your life so much easier should you ever be diagnosed.
Jess: What local resources have you found to be extremely helpful through this process?
Christin: My local mom group has been my rock! Between delivering meals, helping with childcare, and letting me vent, they have made such a huge impact on my life. There are also lots of local cancer support groups, as well as online. (Not local, but) One of the biggest resources that helped me was the community message board on www.breastcancer.org. Last but not least, Ashley Mac’s freezer section totally saved our dinner issues more than a few times during my recovery!
Jess: You've already undergone a double mastectomy. What is the next step in the process for you?
Christin: My tissue expander/implant exchange surgery was March 23rd at St. Vincent’s hospital downtown. This was a short, 45 minute surgery. They reopened a small part of my original mastectomy incisions and inserted the implants through there, so I won’t have any new scars. When I have healed from that, I will have a full hysterectomy, which will include removing my ovaries; I am planning on doing this over summer 2018. From there, I will have the same, if not lower risk, than any woman without the BRCA gene variations. I will still have a mammogram yearly and regular yearly pap smears.
Moving Forward
Christin still has a ways to go before she can put her own journey behind her. But even then, it won't be over for her. She has three, beautiful children, who all have a 50% chance of inheriting the BRCA gene from her. The good news is that with preventative treatments, having the BRCA gene is no longer completely devastating news. Now those with the gene can choose to curtail the anxiety of the unknown and beat cancer before it has a chance to take hold.
“My mom is safe and I’m safe for my kids. I won’t have to wake up every morning and wonder if I have cancer. Recovering from the surgeries is so much easier than that fear." -- Christin
Christin Knight is mom of three and Director of Youth and Family Ministries at Unity of Birmingham. She lives with her family in Homewood. Thanks so much for sharing your story with us Christin!
Help Christin win Birmingham Mommy's Moms Rock contest! She was nominated by a friend and is one of five finalists. She totally deserves it! Vote HERE, it takes two seconds!
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