Preemptive Strike: My Story
Previvor: "Cancer previvors" are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor.
I am a previvor. My mutation was discovered in 2008. I inherited the BRCA2 gene mutation from my mother.
BRCA: "Everyone has two copies of each gene, one from each parent. Most people are born with two normal copies of each gene. Hereditary cancers occur when a person is born with changes or mutations in one copy of a damage-controlling gene which normally protects against cancer. In the majority of these cases, the changes were inherited from the mother or father."
"In women with a BRCA mutation who have never had a diagnosis of cancer, the lifetime risk for breast cancer is very high. Experts don't agree on the exact risk but estimates range from 55% - 85% lifetime risk for breast cancer for women with a mutation in either gene."
Information from the FORCE website: http://www.facingourrisk.org/
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I thought my story started in 2008 when I was told I have one of two gene mutations to indicated ridiculously high cancer rates. Thinking back, I guess my story really started in 2004 when my mother was first diagnosed. But upon further consideration, my story really starts in 1999 when I was 15 and found my first lump. This is when "cancer" became real to me. However, in reality, my story starts at conception and ultimately birth. See, I inherited the BRCA2 gene mutation from my mother. My story unfolds much like a mystery plot. There are twists and turns and it’s not clean. But nonetheless, here is my story:
When I was 15 years old I was reading a magazine that talked about self breast exams. I decided that I should try this. After a couple months of doing exams, I noticed a lump in my right breast. My heart stopped. All I could think of was is this real? I went into my mother's room hysterical as I tried to explain the situation. She immediately denied any issues, but followed up with my pediatrician the next day. We were sent to a gynecologist to have the lump checked out. She was fairly certain this lump was a cyst. It was rather uncommon for teens to develop breast cysts, but they are fairly harmless and she recommended we have it drained. Crisis averted.
This situation popped up again 2 years later with a lump in my left breast. This time is was a benign tumor called a fibroid. I had it removed as it was growing. Two years after this, I found another lump in my right breast. Again a benign fibroid. It was removed and I became diligent in doing self breast exams for these lumps. It was now 2003 and I was hopeful that this recurrence was over.
A short year later, my true journey began. My mom told me she had found a lump in her breast. I wasn't immediately concerned. I mean we had no cancer in our family and because of my experience I had ignorant bliss with regard to breast lumps. Three days later, my bliss was shattered. It was in fact cancer. 2 years after this, she was diagnosed with ovarian cancer. Between the two diagnoses, cancer spread through our family like wildfire. Two aunts succumbed to breast cancer and another to ovarian and the loss of my grandmother to pancreatic cancer.
On a happy note, I married my husband and we started a family right away. I told my mom I was pregnant just months after moving home to help care for her. Andrea was born November 9th, 2007. While I was pregnant my mom was tested for a gene mutation that predicts high levels of particular cancers (breast and ovarian). She was positive for one mutation called BRCA2. Immediately I was told I needed to get tested as I had a 50% of inheriting the gene. I refused as I was pregnant and felt that it could wait until I was ready. My mother's only sister was also told. As we all waiting in gripping anxiety, her test came back negative for both mutations.
After my daughter was born, I experienced somewhat moderate post-partum depression. I had a hard time adjusting and because of this, I further prolonged testing. However as my mom went into remission for ovarian cancer and then quick it developed again, I knew I needed to have the test and start protecting myself. I was terrified of losing my mother and I was sick at the thought of my daughter losing me. I was tested in April of 2008. It took 4 long weeks before I heard the doctor confirm that I was positive for BRCA2. I immediately called mom.
As we cried together my husband just stared in disbelief. He didn't know what this meant. We went that week to my mom's oncologist who had become as close as family to us. She thoroughly explained BRCA2, the implications and the options. I was 24 and thankfully had plenty of time. We talked through doing nothing, some surgery, and a lot of surgery. We talked through family planning and the new risks that pregnancy presented. With the spike in estrogen when pregnant, I increased my chance of developing breast cancer while pregnant. Couple that with age and it was the perfect storm. So we were told that it was imperative to have our children before I turned thirty. So much for kids 4-5 years a part! I had to start yearly MRIs until 30 then alternate between yearly MRIs and yearly mammograms for screenings every six months. I was told I could take out my ovaries in a procedure called an oophorectomy. This would lessen my chance of breast cancer along with the obvious decrease in risk of ovarian cancer. I could also couple this with a cesarean and my last birth if I chose to. For now, I had what I needed, time.
We quickly got pregnant as it took 2 years to create Andrea. I was only 24 and if we wanted time for a potential third child we thought we had better get started. Thank whatever higher power you believe in, that Jackson was an easier pregnancy. As I was pregnant, my mom started to go downhill, fast. Within 6 months she had gone from" controlling" her cancer to it controlling her. She didn't make it to see Jackson's birth. That was the proudest day of my life, but it was also the hardest. I whaled after his birth because she wasn't there to hold my hand, and meet my son. I had fought so hard to have a natural birth (VBAC) and she would have been so proud of me. I felt all alone and I wanted my mother.
After Jackson was born I resumed my MRIs and yearly visits to the oncologist. As the death of my mother sunk in and my life began to take shape without her, I began to really attach to the words my mother said before her death. She asked me (demanded me) to do whatever I could do to not be sick like she was. When I first told her that we were going to try for a second baby, that we felt we didn't have time, she laughed and said we needed to wait. That we did have time and I was over reacting. That seems ironic coming from a person with cancer. But at the time she was under control. But after declining rapidly and having some persistent setbacks, my mom quickly changed from "don't worry" to, "please don't take your knowledge for granted." I promised my mom, and I meant it.
It became clear that I needed to make a decision. I needed to follow through on the advice from my doctors. In March of 2011, I started to research prophylactic surgery. Prophylactic surgery is a preventative surgery where the most at risk tissue is removed. The impact of this surgery is that a person with BRCA minimizes their risk of breast and ovarian cancer to single statistical digits. While I had always thought I would only have my ovaries removed, I found that my breast cancer risk would only decrease to 50%. I felt that was still too high. I then decided that if I was going to pursue this, I needed to do it. I decided to have my breast and ovaries removed.
In June of 2011, I had the first phase of prophylactic surgery. I had a bilateral mastectomy and bilateral oophorectomy and DIEP flap reconstruction. I was under for 10 hours and spent nine weeks recovering. I had the second phase of reconstruction December 2011. I spent 2 hours under and four weeks recovering. I still have more reconstruction and healing to complete, but day to day I feel at peace with my decision and find security that I will be around to never miss a moment with my family.
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