Growing up I never knew that much about cancer and I certainly had no idea that breast and ovarian cancer ran in my Dad’s side of the family. When I was a little girl, I remember making weekly visits to see my grandma. She was gravely ill. Little did I know cancer would take her life. She was a two-time breast cancer survivor. But, it was the silent killer, ovarian cancer, which would kill her.
When my aunt was 38, cancer struck again. She was diagnosed with cancer; and the genetic testing came back. BRCA1 Positive. She went through chemo and treatments, had a bilateral mastectomy and has been cancer free for quite some time now. As I got older, I understood what cancer was and knew the gene ran in the family, and it’s always been in the back of my mind to get the genetic testing done.
Fast forward to 2014.
I was out for a jog on cool day in March and my phone vibrated. A text from Sarah, my older sister (but not by much). Her biopsy came back and she had breast cancer. I struggled the rest of my run and tried to keep the tears from rolling down my cheeks. How could my sister be diagnosed at 29? What does that mean for me being 26? Will I be in her shoes in a few years? Is it BRCA1 related? Is she okay?
We didn’t know much at the time and had to play the waiting game. My sister lives in South Carolina. Some of my siblings went down to see her, but I wasn’t quite ready. A few weeks later, I went to my mom with urgency that I HAD to go see her and the time was now. We booked a flight and less than 24 hours later, Liz and I were on an airplane. Little did I know, that same day Sarah called my mom and told her the genetic testing results came back but they wouldn’t tell her over the phone.
I got to South Carolina and was able to be at her port “installation” surgery and geneticist appointment where the results were read. It was indeed BRCA1. We all were crying as the sweet doctor read the outcome and what it meant. She gave us all papers and a copy of Sarah’s results so I could get tested when I got home. In fact, the doctor offered to move the schedule around and test me right then and there. I told her no. I wanted to go home and get my ducks in a row before doing such a huge, high risk test that could ultimately affect my life-insurance policy and a few other things.
If you don’t have life insurance or do have it and want to make changes, you cannot do the genetic testing until the insurance policy is approved. You cannot have future appointments either, because they’ll wait for the appointment dates/results and then approve or deny your policy. I already had a policy but wanted to modify it and make sure everything was to my liking should I be stuck with a positive test result. When you test positive, it’s extremely difficult to up your policy. Life insurance policy differs from health insurance whereas it can abide by its own rules and can “discriminate” against you for preexisting conditions or high risk things. Sidenote: if you want to get the genetic testing done, get alllll your ducks in a row first.
Before long I, too, was sitting in a lab getting blood drawn. My younger sister, Liz, set up an appointment at the same time. We both saw the genetic counselor the same day and I can’t tell you how awesome it was for her to be there too. The counselor was very kind and sweet, but I didn’t want to talk about “what-if’s”. I knew what I would do if my test came out positive. Besides, there was no need to discuss a positive test result because I was seeing breast cancer first hand. What was there to discuss?
Thank goodness our genetic counselor was amazing and even had us laughing. We came prepared with all of the family test results, including my aunt’s, and had my dad’s family tree completed. I took a lot of notes and remembered things quite well. The one thing that stuck out in my mind was, “what if Liz had the gene and I didn’t or vice versa? What if neither one of us had the gene and Sarah was the only girl in the family to test positive?” The counselor was concerned about that, and spent some time going over that to make sure we both were psychologically prepared and equipped with how we’d move forward.
We left her office, May 8th, and I was at peace. There was nothing I could do. Everything was out of my control. There was nothing I could do to my DNA to change it.
My life changed May 20th, 2014. My phone rang and my worst nightmare was reality. I tested positive for the gene mutation.
When you’re a carrier for BRCA1, you have an 87% chance of developing breast cancer in your lifetime and a 44% chance of ovarian cancer. That’s extremely high risks. I felt my breasts were a ticking time bomb and I was playing Russian Roulette.
I was 26 when I got the news. Called my parents, told my siblings, and checked out. The gentleman on the phone told me about my 4 options, which was also discussed in the genetic counseling appointment. I already knew and had been doing research since my sister’s diagnosis.
The 4 options were:
- Do nothing! (which is complete foolishness!)
- Do a preventative chemo treatment drug, which would only reduce my odds for up to 5 years.
- Do surveillance – for breasts, I had to do monthly self-exams and mammograms and MRI’s twice a year; and for ovaries, vaginal ultrasounds and CA-125 blood tests twice a year.
- Do prophylactic surgeries.
After getting the call, I set up my mammogram and other appointments with breast surgeons and reconstructive surgeons.
My mammogram appointment was interesting. My friend met me at the hospital, because my mom was in South Carolina. I was anxious after because what if they found something? My surgeon appointments were straight-forward and I was extremely pleased with both of them. They put my mind at ease, spent over two hours with me and explained things in great detail. I didn’t even bother to get a second opinion. I LOVED them.
After meeting with them, I randomly bumped into people who had breast cancer and would ask them who their surgeons were. A lot of them said the same name (which was the doctor I met with). Some people would tell me they wished they went with her. I knew I was making the right decision.
After seeing my gynecologist and telling her the news, she immediately ordered the CA-125 blood test and sent me to the lab. Once again, I found myself getting poked and two tubes of blood taken. She ordered the vaginal ultrasound and within a week I was in another office getting poked and prodded with this uncomfortable probe. All of these visits were extremely stressful. When would I get the call saying they found something? Would this be the time they find something?
Like my aunt, grandma, and sister, I knew breast cancer would be in my future at some point. I decided enough was enough. I couldn’t handle the anxiety of doctor’s appointments on top of how expensive everything was beginning to be…and this was the first year of surveillance! I decided if I was going to lose my breasts, it would be on my terms, not cancer’s.
I had my prophylactic bilateral mastectomy (PBM) September 10, 2014. Making the decision to have the surgery was extremely difficult, but yet, easy. I can’t tell you how many nights I cried myself to sleep, but with the knowledge I faced, the decision was a no-brainer. I wasn’t going to walk around with ticking time bombs or wonder when my body would turn against me. I poured over research, talked to other women who were BRCA1, read blog after blog, emailed several ladies from the blogs, and reached out to those with cancer. I’m very analytical and weighed all my options. I made a pros and cons sheet for the surgery. I made the best decision for me.
From the time I got the call saying BRCA+ to making a decision on surgery it was only a matter of a few weeks. I knew in the back of my mind, surgery was the only way to go (and I knew that when I met with the genetic counselor).
I knew the surgery would be hard, both physically and emotionally. But, if I heard the words you have cancer down the road, I could only be mad and upset with myself. My decision boiled down to three things: being told I would be Sarah in a few years, statistics, and my health right now. Doing the surgery earlier in life, while being young, single and healthy, would make the recovery process somewhat easier (and boy has it made a difference).
I’ve been extremely blessed to have a great deal of support from friends and family. But, I’m also aware not everyone agrees with my decisions. I’ve had some people say some awful things to me and even lost a few friends over it. I’ve felt judged and I would be lying if I said my feelings weren’t hurt from time to time. One guy friend went as far as saying, “I would NEVER date a girl with fake boobs.” One lady looked at me and said, “Well, you get a free boob job and can choose your size now.” Actually, I’m paying thousands of dollars to meet with doctors/surgeons, have tests done…how is this a free boob job? Another person told me they were just boobs and could be replaced. Be replaced? Replaced with fake boob, be carved out like a pumpkin, lose feelings in both breasts and never be able to breastfeed my child should I have one. Oh, and never be able to feel my child/newborn lying on my chest. That’s right, they’re just boobs. Yes, but they’re MY breasts. Another told me I was being ridiculous and only making this decision out of fear. Fear? Perhaps fear played a little part. But don’t tell me you wouldn’t make the decision if your sister was going through hell and you very well could be in that situation in a few short years (to which I was told by numerous doctors that would be me…oh, yes, keep reading. I’ll get into that, too)
No one wants to get cancer.
No one wants to watch a loved one go through anything that could go wrong – go wrong with chemo and biopsies. No one wants to lose their breasts and ovaries.
I loved my breasts. In fact, it was the one thing I absolutely loved about my body. They were perfect because they were mine. It was an easy decision to do the surgery, but not an easy decision to part with my feminine body parts. How would I explain my lack of boobs to people? Would I be insecure after surgery not having any? (to which I can honestly say now that I am NOT insecure with not having any).
I have grown so much since March when my sister was diagnosed and May when I received the BRCA1+ news. Even though I don’t have breasts right now and have rocks in my chest (expanders), I feel more beautiful, more comfortable with life, more confident, and definitely more feminine. As someone told me a few months ago, “being empowered is a wonderful thing and having peace of mind is priceless.” Knowledge is power. Power to take control and control the outcome.
Well, what about ovarian cancer?
I am choosing to do active surveillance. I am not comfortable or ready to do an oophorectomy or hysterectomy. I am single and don’t have any kids. I would like to get married and maybe have kids of my own, but if that doesn’t happen I’m okay with that too. I will make a decision on a hysterectomy by age 32. 35 is the standard age to consider removing, but why wait when I know it already runs in the family. Until then, I will continue to be faithful to take care of my body and be active with screenings.
My advice for others affected by BRCA1+ is to listen to medical professionals but to do your own research.
I spent hours and months researching the gene to understand all the risks the gene mutation has. I understood the risks of complications and the potential for longer recovery. I also spent countless hours on the phone with doctors, surgeons and other women and listened to their opinions and first-hand stories. I was fully aware of everything and able to make an informed decision.
I made my decision and completely stand by it, nor do I regret it one bit! When my pathology report came back and there were atypical cells found in both breasts and a small lump in my right breast, a sense of relief and joy came rushing through my body. In my case, my cells were already beginning to mutate and change. Being BRCA1, my body allows the cells to grow, divide uncontrollably and eventually forming a tumor. They didn’t get to the point of growing outside the ductal and becoming a lump, but they were well on the way to becoming cancerous.
I made the right decision. Period.
People said I was crazy and extreme. Yep, they can think that, but I don’t believe it. I prevented cancer from taking control of me. I controlled the situation. I controlled the outcome. I’d rather be proactive than reactive.
The hardest part in this process has been the recovery. I woke up after surgery feeling like a MAC truck hit me. Or like I told my mom, “I feel like I have an elephant sitting on my chest just chilling out.” I’d like to think I have a pretty high pain tolerance (thanks to my 6 brothers). The pain hasn’t really been an issue. In fact, I haven’t had any pain meds for the past 5 days (score!). The downtime has me pulling my hair out. I’m a very active person and don’t like sitting still. I’m always on the go and being told I cannot do something is quite frustrating. I just want to put my hair in a ponytail. I’ve had my moments, but I feel I’ve stayed pretty positive this whole time and haven’t complained.
I’m three weeks out, feeling amazing, loving my mosquito bites…but extremely antsy. I’m feisty and ready to get back into my normal. I miss running, biking, strength training, and swimming…wait, did I say swimming?!? I’m going to be going back to work for a few hours here and there throughout the week. I’m not quite ready for an 8-hour, 40-hour work week. I don’t want to rush things and end up a few steps back. I’m learning patience.
Through the struggles, I have learned much about myself, my body and my mind. I did this! I will get through it. I am alive, breathing and healthy. Nothing can stop me now!
I am extremely lucky to have this knowledge that my Grandma didn’t have. I’m lucky to have the choice to be a Previvor instead of a Survivor. I don’t have to worry about the 87% hereditary risk of getting breast cancer. I don’t have to worry about future mammograms/MRI’s or worry about my ticking time bombs.
Knowledge is Power.
So, let me ask you, if you knew your car had faulty brakes, would you still get it in and drive it around?
If you knew you had the BRCA gene mutation, how far would YOU go to avoid breast/ovarian cancer?
PS: Today is National Previvor Day and kicks off Breast Cancer Awareness Month. I’m going to celebrate being a Previvor with a nap and a nice dinner out…Mosquito bites and all…