Dealing With My Breast Cancer Gene
Eighteen months ago I had a feeling. I read about the free genetic cancer screenings being offered through the Healthy Oregon Project (HOP) and felt strongly that I should do it.
I didn’t have a particular reason for getting genetic testing—I knew I had some family history of cancer but nothing super worrisome—but I felt compelled. When my test kit arrived, I spit into the two provided tubes and dropped them in the return mail.
Several months later, I had a dream. A quick caveat: I’m not generally a big “dream” person… it’s just not something that’s been a big thing in my life. But this dream was different. The most vivid dream I’ve ever experienced and it felt weirdly important.
In the dream, I was having a double mastectomy and the doctor was scooping out my breast tissue—scraping out every last bit from the inside of my skin. I woke abruptly. My eyes shot open and I immediately woke Gary up to tell him about the dream because it was just so real and had such a strange quality.
Three hours later, I received a request for a second saliva sample from the genetic testing company. A request they only make if A) there was a problem with the first sample or B) they need to confirm a positive result. I burst into tears when the second test kit landed on my doorstep. I just knew right then I had some kind of cancer gene.
After I dropped off the second sample, I called Gary from the parking lot of the mail place in a panic.
“This is something but I don’t know what or how to deal with it. What if I have cancer? What if I get cancer?” I was free-falling into a deep anxiety spiral.
“Whatever it is, we’ll get through it,” he told me.
A few weeks later I had my answer: I tested positive for a gene mutation called PALB2. It’s closely related to a more widely known gene called BRCA2 which was made famous when Angelina Jolie tested positive for it and decided to undergo a preventative mastectomy as a result.
My gene mutation means I have a 40-60% chance of developing breast cancer in my lifetime. But not just any breast cancer. I’m 17x more likely than the average person to develop triple-negative breast cancer which is both more aggressive and harder to treat. As a result, when people with this gene do develop breast cancer, our expected survival rate is less than 50%. It also carries an increased chance of ovarian cancer and pancreatic cancer, both of which are nearly impossible to find until it’s too late.
I also discovered my family history of cancer is more extensive than I knew. My grandmother and great-grandmother both had breast cancer and my uncle died a few years ago of a cancer caused by this gene mutation. It seems that every one of my relatives with this gene mutation has developed cancer (with the notable exception of the parent who passed it down.)
Obviously, this news was upsetting. I cried, grieved, and researched furiously. With help from a team of high-risk breast specialists and my genetic counselor (provided by HOP), I figured out I had three options: I could screen carefully for the rest of my life with yearly mammograms and MRIs. I could take medication that would lower my risk significantly. Or I could have preventative surgery.
I started with the screenings. Over the course of 3 weeks last fall, I had my very first mammogram (such a treat) followed a few days later by my second mammogram because they found several suspicious masses, followed by an ultrasound, followed by an MRI (because they found more suspicious masses), followed a few days later by another ultrasound.
My anxiety was out of control, the MRI contrast made me feel like shit, my boobs were poked, prodded, and smashed by a dozen different people, and I spent a lot of time crying in the radiologist’s parking lot. They eventually decided the masses were “probably benign” and sent me home with orders for twice-yearly mammograms and MRIs for the next few years.
Around that time, I had another dream. In this one, I was hacking off my hair with a pair of scissors. Just hacking away and watching it fall to the floor. I could feel the hair in my fingers, see the jagged edges, and hear the scissors snipping.
I woke up and decided I couldn’t do it. I couldn’t risk getting sick and dying and leaving my children without their mother. I didn’t want to fight cancer and I didn’t want my kids to watch me fight cancer. And I also didn’t want to put myself through the mental agony (and physical discomfort) of twice-yearly MRIs, mammograms, and ultrasounds.
Surgery, I’ve decided, is my best option. Not a great option, mind you, but the best option given the circumstances.
I found a surgeon in San Francisco who specializes in “sensation-sparing” mastectomies so unlike most mastectomy patients, I will still have feeling in my chest and upper torso after surgery. Gary and I went to San Francisco last month for my initial consultation.
My double mastectomy is now scheduled for mid-October.
I hadn’t planned to share this information publicly and until recently I’d only told about a dozen people. But out of those dozen people, one was inspired by my situation to get the mammogram she’d been putting off and discovered she had breast cancer (she’s now completed treatment and is thankfully fine because they caught it so early). Another was inspired to get genetic testing and discovered she has BRCA2 so she is now taking her own steps to prevent cancer.
If sharing my story publicly can save another couple of lives, it will be more than worth it.
This is not a road I would’ve chosen to walk. Frankly, I hate that this is my journey—but I’m glad I know I’m on it. I realize not everyone wants to know these types of health things and that’s fine, but to me, this knowledge is empowering. It gives me the option to prevent cancer rather than being unexpectedly thrown into the ring with it.
So while genetic cancer screening is not for everyone, if you have a feeling about it, consider this your nudge to take the first step to look into it.
And if you’re overdue for a mammogram, please, for the love of God, go get it done.
I’ll bring y’all along on this journey with me in case it’s helpful for any of you and if you have questions, please ask. I’m an open book and I feel confident in my decision so I’m *happy to discuss any piece of it that might be encouraging or helpful.
*I am not, however, open to your opinion about my decision or recommendations for alternatives. I promise I’ve considered every single freaking option both on my own and with my many doctors and specialists. I’ve considered the risks and made my choice. Please respect my decision.