"Cancer has been in my family for so many years; too many aunts and cousins to count, many BRCA positive. To be honest, I wasn’t shocked when I tested positive for “the gene”. It’s been mostly breast, and ovarian in my family. "
Every Tuesday in October, we’ll be highlighting the story of a survivor for Breast Cancer Awareness Month. This week we asked Samantha to share her story of getting a double mastectomy after testing confirmed the presence of cancer-causing BRCA1 gene.
My name is Samantha, I am 32 years old, I have two young boys, a dog, a cat, and a huge Italian family. Oh, and I am BRCA1 positive which is an abbreviation for "Breast Cancer Gene". It is exactly how it sounds; I have a breast cancer gene. It's not just breast cancer though. It’s ovarian, cervical, fallopian tube, pancreatic, and probably a few others I failed to mention. Being BRCA1 positive means I am at a much higher risk of developing breast or ovarian cancer compared to someone who doesn’t have this mutation. A positive result doesn’t mean you're certain to develop cancer but your chances are significantly higher.
About 13% of women in the general population will develop breast cancer at some point in their life. By contrast, 55%-72% of women who inherit a BRCA1 mutation will develop breast cancer. About 1.2% of women in the general population will develop ovarian cancer sometime during their lives. By contrast, 39%-44% of women who inherit this mutation will develop ovarian cancer. So as you can see based on data, my odds weren’t the greatest.
Cancer has been in my family for so many years; too many aunts and cousins to count, many BRCA positive. To be honest, I wasn’t shocked when I tested positive for “the gene”. It’s been mostly breast, and ovarian in my family. My mom (Mary) was diagnosed with ovarian cancer when she was 42 years old.
During her total hysterectomy, which is an operation where they remove the uterus, cervix, ovaries and fallopian tubes they found a second cancer in her fallopian tubes. If she hadn’t had ovarian cancer, they would never have had to give her a hysterectomy, which would mean we may never have found her fallopian tube cancer. In a weird way, it was almost a blessing. After months of chemotherapy and radiation, our family got the news that her cancer was gone. She has been cancer-free ever since and we are so grateful because quite simply, our world wouldn’t be the same.
After this, I had begun my regular testing with the women’s clinic (I was about 20 years old). Annual mammograms, breast exams, ultrasounds and MRIs. The medical team encouraged me to get the BRCA testing when I was ready so in the event I was positive (which I am) I could take the necessary preventative measures if I chose to do so. I wanted to have kids before I got the testing. I don’t know why exactly but part of me thought that if I tested positive it would hinder my decision when choosing to have kids because this gene is of course hereditary.
Fast forward a few years, I got married and had two beautiful boys; Rome (4) and Sonny (2). After I had Sonny I knew it was time to get my testing done. Everything in life shifted and it was all about my boys. What could I do to make sure that I am the healthiest person that I can be so I am able to be here with my babies for as long as possible?
So I booked the test; went for bloodwork and 3 weeks later I got a call from the Genetics Clinic providing me with my test results. I will never forget that moment. I was sitting on the floor in the dining room and the kids were running (one was running the other was crawling at the time) towards me to catch them.
The phone rang and I thought WELL THIS IS IT. My counsellor said, “I am so sorry Sam, but I have bad news”. My heart sunk, and I said, “Well I know what that means”. After this call I spent months meeting with different doctors to navigate my next steps. I knew the moment I got off that phone call I would need to get a total hysterectomy and a double mastectomy. These would be two surgeries that would significantly reduce my chances of getting ovarian and breast cancer. And to be honest I would do anything to potentially give me extra time with my family. Especially my kids, like I said everything I do in life is ultimately for them and right now, they need their mom.
I decided to have the hysterectomy first (October 2020) because the ovaries scared me more than my breasts.. They call it “the silent killer” because by the time you realize you have ovarian cancer, it's likely spread, and at times, rapidly. Because I had my ovaries removed in this process, I immediately went into menopause as a 31 year old woman. Your ovaries produce estrogen, and the moment they are removed you will go into menopause. Let me just say it’s not a great feeling. The night sweats, constant hot flashes, mood swings, and just overall not feeling like myself was all incredibly challenging, especially while recovering from surgery.
Luckily a few weeks following my surgery I was able to get started on my hormone replacement therapy. It’s a clear patch that I wear every day and change twice a week. It’s as simple as that, and I feel significantly more like my pre-menopause self.
One surgery down, one to go. In August of 2021, I had a bilateral prophylactic nipple sparring double mastectomy with immediate reconstruction. Try saying that 3 times. It’s a mouthful, and in short, it’s basically where the breasts and the breast tissue is removed but the nipples are left in place. My surgery did follow with immediate breast reconstruction where my surgeon used a tissue expander.
A tissue expander is an empty breast implant that gets filled with normal saline over about 6 to 8 weeks post operation until you reach your desired breast size that you discussed beforehand. I have chosen to get an “exchange” which means my surgeon will swap out my saline implants and exchange them with a 100% silicone-based implant and my journey will slowly come to an end.
Having my prophylactic bilateral double mastectomy has reduced my risk of getting breast cancer by up to 100% and my risk of developing ovarian cancer is under 5%. Every woman who goes through this journey will experience it differently, have a different outlook and be affected emotionally in a different way.
Shout out to all the women who have been affected by cancer in some way. Whether they have had it, or lost someone because of it, or are undergoing treatment, taking preventative measure, or who have lost the hard battle. I see you and I love you.