No one wants cancer, and most people don’t have to deal with it until they are actually diagnosed. Unless you’re like me and are considered to be high-risk. Both my mother and my grandmother had breast cancer. My grandmother’s metastasized and she died at forty-four, which is my age now. My mom also had stage four colon cancer. Miraculously, she is a survivor. My maternal uncle has had esophageal cancer and currently has a very slow growing kidney cancer. We’ve always thought there was some kind of genetic predisposition for cancer in our family. For me there was just no proof since I had tested negative for the genes commonly associated with breast cancer (BRCA1 and BRCA2).
My family’s high risk was enough to require mammograms and colonoscopies 10 years earlier than the general population. One time the doctor saw something suspicious in one of my mammograms and I had to go back to have it redone. As I sat in the office waiting for the results, I started to panic thinking “what if it’s bad news and I am here alone?” I was terrified and the fear began to overwhelm me. I tried not to think about my kids because I knew I would have surely broken down. It wasn't too long before the doctor came out and luckily, the results were negative. I made a mental note to NEVER go, or let anyone I care about go to an important medical appointment alone.
A cancer diagnosis changes your life forever. Even though my mom is a survivor for 15 years, there is a little cloud of worry that lingers in the background following all of us who love her. We forget about it most of the time because we want to enjoy the beauty in life, but we are forced to remember every time she goes for cancer screenings or if she is not feeling well. The nerves resurface and we keep our fingers crossed until we get an all clear from the doctor. I think these feelings are the norm after experiencing cancer because you’re so fearful that it will return.
Halfway through my life, I have witnessed many people suffer and lose the battle to this dreaded disease. When the casualties are the generation ahead of you it’s terrible. You and your friends lose parents, aunts and uncles. If the patient is someone you are close with, you know the misery involved firsthand. You listen to the horror stories of spreading cancer, massive surgeries and chemotherapy. As you try to support the victim’s loved ones during some of the most difficult times in their lives, it's gut wrenching. The toll the mental stress takes on the family and friends is unbearable.
When you find out the cancer patient is within your generation the situation becomes relatable. The first time that happened was when my oldest son was in kindergarten. The mom of a child in his class passed away after her breast cancer metastasized and brain cancer eventually killed her. As I sat in the church at her funeral mass and read the program, I noticed that she was a week younger than me. I was thirty-six at the time. She left two small children and devastated family behind. Unless you have been jolted by such a tragedy, your mid-thirties seem too young to think about your days being numbered. That day at the funeral was the first time I felt a looming sense of mortality. Although dying of cancer at 36 is not the norm, I felt an uncomfortable twinge that made me a lot more grateful for my good health.
As time goes on, although I still consider myself to be young at 44, there are more instances of moms that are my age being diagnosed. I have had two friends recently diagnosed. Both, like me, are mom’s to three children. Their grace and strength in handling the diagnosis, surgeries and chemo have been inspiring. I only hope if I am in their situation, I can handle the process that well. I tried to have compassion and remain positive when I saw them. On the other hand, my heart broke considering what must go through their heads during idle time.
My two greatest fears as a mother are losing a child or dying myself and leaving them to navigate this often cruel world without my guidance and love. Some people have had wonderful childhoods and have tight-knit families, but not me. I feel like I have been blessed with giving my children the happy and stable childhood that I never had. It’s as if I have been healed because I know that I have stopped what could have been a vicious cycle. My children are my life’s greatest gift. The thought of a sickness ripping through what I have worked so hard to create, makes me both furious and sick to my stomach. Unfortunately, with cancer, you can have a strong will and be the most valiant fighter, yet still lose the battle.
Another precautionary measure I have taken to reduce my risk of cancer is getting tested for genetic mutations linked to higher risks. My first round of testing for the BRCA1 and the BRCA2 thankfully came back negative. Despite this result, I was still considered high risk due to my family history. A few weeks ago, I received a call from my maternal uncle. He went for genetic testing and was positive for a new gene that is related to ALL of the cancers that he, my mother and grandmother have had, with breast cancer being number one on the list. He sent me his paperwork so that I could bring it to my genetic counselor.
I am a person who tries not to worry until there is good reason because, in my opinion, it is not productive. I went for the genetic testing and waited for the results. I really didn’t put much thought into it until I received the phone call. The genetic counselor asked me how my weekend was, we shared some small talk and then she said, "Mrs. Wood, you have tested positive for the CHEK2 mutation and your lifetime risk of getting cancer is now at 48%." I first thought of my kids as I tried to listen to her tell me that I was already taking all of the precautions with the exception of a preventative double mastectomy. I always said that if I had breast cancer there would be no doubt that I would remove both of my breasts. However, as it stands now I have a very high risk, but no actual cancer, so I am facing the difficult decision of whether or not to get a preventative double mastectomy.
This new journey awaits me and I am so very frightened of getting cancer, and of having a major surgery to remove my breasts. Regardless of those fears, I am inclined to take the most drastic measures to greatly reduce my risk because I DON’T WANT CANCER! I want to see my children graduate, go to college, and get married. I want to have the opportunity to be the best grandma ever! I want to live long and healthy so that I can celebrate all of the important moments with my family. And having lost a parent, I don’t want my children to go through such pain too early if I can help it.
I am not shocked at the genetic tests positive results, and it is now proven that my risk is much higher than the rest of the world. This is surreal, empowering, scary and a blessing. Just a few years ago, I would have taken my chances because no one even knew about the CHEK2 mutation. Now I have options and although some might seem extreme, my risk goes from 48% to about 4% if i have a double mastectomy. That is significant, especially since the average woman’s chance of getting breast cancer in a lifetime is between 8 and 12%. If I take every measure to lower my risk, I will have peace knowing that I did everything I could to be around for my children as long as possible. And...if the worst happens, I will know that the power higher than me had other plans.