I still remember when I first felt the lump in my mom’s breast. We were at the doctor’s office, and the doctor encouraged me to feel it. I am sure she wanted me to understand what I should be searching for in my self-breast exams. I don’t know what I expected, but I felt it and then recoiled. Ultimately, my mother chose to have a lumpectomy and chemo. Later, my mother would be diagnosed with lung cancer, and I asked the doctor if it was from breast cancer. His answer was vague and non-committal as he brushed the question away with no explanation. Eventually, we would lose her. I didn’t know then, but I know now that breast cancer will spread to the lungs, liver, and brain. My mother had cancer in all of those areas when she passed. ~Carla
Several years before this event, we learned that our maternal grandmother and maternal aunt (Aunt 1) had breast cancer. My mother had just two siblings, both girls. We knew this at the same time that we learned our maternal first cousin (Cousin 1), the only daughter of (Aunt 1), now had also been diagnosed with breast cancer. She was just 38 at the time. (Aunt 1) sought treatment and is a survivor today. (Cousin 1) mastectomy/reconstruction and chemotherapy, and more than 20 years later, she is also a successful survivor story.
These events made it clear that careful breast exams and yearly mammograms starting at 30 were a must for the women in our family.
(Aunt 2) had never been diagnosed with breast cancer; however, her daughter and our cousin (Cousin 2), the only daughter of (Aunt 2), was also diagnosed with breast cancer at age 33. With this news came a new heaviness to our need for self-breast exams and (bi)yearly scans. (Cousin 2) chose a bilateral mastectomy and reconstruction, along with chemotherapy, and more than ten years later, she is also a successful survivor story.
I remember when my husband called to say my doctor had left a message to please call him when I could. All I could muster out was a deflated, “Oh crap.” My husband, with a crack in his voice, could only muster a “yea.” A few hours later, we found out indeed there was a new something on my MRI. It was small, and all points indicated it was benign, but the radiologist wanted further testing and a biopsy. This time ended up being the longest month of our lives; I don’t think my husband slept or stopped pacing. He didn’t care what the results showed; the decision to proceed with a (prophylactic) mastectomy was clear. ~Ally
I remember the day I had finally had enough. I was sitting in my doctor’s office nervously waiting for him. He walked in, sat down and looked at me, and said, “we need to do something about this.” For the past two years, they had been watching an area in my left breast. They had always felt it benign, but it was enough to make them do bi-yearly scans. My heart sunk as I was expecting to hear that they had found that the spot had grown. He then said, “every time we do your testing, I am nervous about opening your results, and I can’t imagine what you are feeling. The mass is unchanged, but I’m not too fond of it. We can do things to ensure that we don’t open these results to find a bad report one day. What do you think”? I agreed; it was time to learn about my prophylactic and surgical options. ~Carla
The choice for prophylactic mastectomy and reconstruction is not for everyone. As more data becomes available through intense research, oncologists are finding ways to preserve women’s breasts. For others, there is peace of mind through (prophylactic surgical) prevention.
There is no right or wrong choice.
If you have a strong family history and carry an at-risk gene, such as the BRCA or PALB2, we encourage you to educate yourself and talk with a genetic counselor. When Allyson did her genetic testing, her PALB2 gene showed a variance of unknown significance (PALB2-VUS). Per this article from BreastCancer.org, research into this gene has heightened as it has become increasingly identified in cancer research to carry risk factors related to breast cancer and pancreatic and ovarian cancers. This gene MUTATION is known as a high-risk gene mutation. Again, Allyson tested positive for a variance in this gene, not precisely a mutation. To explain this significance, one has to understand the science: a healthy PALB2 gene interacts with BRCA2 to repair damaged DNA; when the PALB2 gene is mutated, it cannot repair cell DNA which can cause cells to multiply and become cancerous.
Our cousin Jodi tested positive for a gene variance, though it differed from Allyson’s. For her, the CHEK2 gene showed a variance of unknown significance. Again the science: the CHEK2 gene gives your cells instructions to make a protein called CHK2; their work is to suppress tumors, which keeps cells from growing and dividing too quickly. For example, when DNA is damaged, the CHK2 protein works with a host of other proteins to stop cell division. This work is the act of tumor suppression when healthy cells keep cells with broken DNA from dividing. This disruption can cause a mutation that can potentially allow cells to divide and become cancerous.
For Ally and me, prophylactic breast surgery was an answer, especially when we learned that it could reduce our risk of developing breast cancer by as much as 97%. The benefit of prophylactic surgery is counted one year at a time; in relation, the younger you are at the time of surgery, the more significant the potential benefit. The older you are, the less benefit.
Of course, this is different for everyone, and each situation is unique. To start, talk to your doctor: what is your risk and then answer the question, “How do I best manage it”?
Lastly, it is essential to remember that there are no guarantees. No procedure — not even removing healthy tissue can eliminate the risk of cancer. The risk, though very small, remains that cancer can still develop in the areas where the tissue had been. Even after prophylactic surgery, vigil monitoring is necessary. We will leave you with this thought: talk to your doctor about breast cancer, especially if you have a family history. Then decide on a plan of when to begin and how often to continue cancer screenings.