I read Angelina Jolie’s story today about her decision to undergo a preventative mastectomy after testing positive for the BRCA1 gene mutation. I was near tears as I read; this very public woman had to face the same decision I was struggling with in private. I was very inspired by her willingness to share her story, especially given all the controversy it was likely to create in the already heated debate over preventative surgeries such as this. Once you receive news that you are at a significantly increased risk of cancer, what do you do with this information? That is the question I am currently working through myself.
I was very young when my maternal grandmother had her double mastectomy after her diagnosis with breast cancer, and my dad was merely eight years old when his mother died from the disease. It wasn’t until my sister was diagnosed with breast cancer at 32 years old that I truly learned the magnitude of the disease. I have never felt the raw, painful, helpless feeling of fear like I felt after my sister’s diagnosis. She is my best friend…I could not fathom losing her. I witnessed the intense recovery process she had to undergo after her double mastectomy surgery — the tubes and drains, the inability to lift her arms, the fatigue and pain. And then there was chemo. I couldn’t believe this was happening to her. Why was this happening to her? It wasn’t until after my sister opted to participate in a medical research study through UW Medicine that we received answers to part of this puzzle. My sister tested positive for the CHEK2 gene mutation, a relatively uncommon mutation that significantly increases the carrier’s chance of contracting breast cancer.
After learning this, I couldn’t help but wonder if I too carried this gene mutation. I knew that if I wasn’t tested, I would forever battle this question. I was fortunate enough to have insurance that covered the cost of the test, and I felt like I was fully prepared to get the results. Within a few weeks, I received the call. I tested positive. I remember getting off the phone and feeling very empowered. I had the knowledge, and I could do something about it! I was ready to deal with this. And then reality set in.
I met with a team of geneticists to discuss my plan. Mammograms and MRIs were to be administered every six months for surveillance. I could choose to take Tamoxifen, a drug that blocks estrogen and might help prevent the development of breast cancer, but has many unpleasant and sometimes life-threatening side effects. And then my genetic doctor broached the idea of undergoing a double mastectomy. This idea hadn’t even occurred to me, especially since I had only heard of this as an option for patients with a BRCA mutation. Why wouldn’t I just have the surgery, I thought? It would reduce my risk of contracting the disease, and I wouldn’t even have to worry about the surveillance testing, waiting in angst for the results every six months. I wouldn’t need to think about taking Tamoxifen. I immediately set up appointments to meet with a surgeon and plastic surgeon and a breast oncologist.
And then one day, as my appointments approached, I actually took a moment to breathe. How would this gene mutation affect my two sons’ health? What about their own children one day? How can I make any sort of decision when so much about this gene mutation is still unknown?
Regardless of the decision I make, it’s difficult not to feel self-conscious and second-guess myself. If I opt for the preventative mastectomy, my recovery could be long and painful. I will need to ask for help, which is hard for me to do, especially considering this surgery will be a choice…I will be having it without actually having a cancer diagnosis. What if I have the surgery and in five or ten years a cure or preventative drug is discovered that renders such extreme surgeries unnecessary? What if I don’t get the surgery, and I end up getting cancer? What if I wait too long to make a decision? How will any of these decisions affect my children? My husband? My life?
I don’t have any answers for these questions yet. I don’t know when I will. And I know I can’t be alone. All I know is that I am armed with extremely powerful information, and I am grateful to have it.
There are heated debates and opinions about the topic of preventative mastectomies. Some feel the procedure is much too drastic, while others question why one would wait to have the procedure when a person’s risk of contracting the disease is high. It is hard to make my decision after reading and hearing all the strong opinions on the topic. But I know I have to get past that. I keep trying to tell myself that whatever decision I make, it is my decision to make. Because this is my life.