Before I start, I should add that I don’t share this news lightly. It’s something I’ve considered for many years, watching the days on the calendar, watching the years, all the while knowing the possibilities on the horizon…
I have a breast cancer gene. One that my mother most likely had, one that I carry with her memory. It’s not the most common one, the one that we’ve heard about – made famous by Angelina Jolie and her decisions to remove her breasts. But it’s not great. It’s called chek2. That, paired with the high family risk, leaves me with a “high risk” or 50/50 chance of getting breast cancer. The average woman’s risk is between 10-13% Nationwide. The risk of a person getting breast cancer before the age of 45 is below 3%, and yet my mother got it at 37.
I met with a geneticist last summer, who administered a 9 panel genetic test. (I had postponed it for insurance reasons and because I feared that I would have it and this would have the pre-existing condition on my report.) Two weeks later, we found out what we had suspected. It was t a fluke that my mother had cancer. It was predestined. Written in the stars, or in her genes, however you want to look at it.
I was assigned to the top doctors at the Carbone Clinic here in town, specifically to a team of women that are at the top of the field, know their stuff, and are funny as hell. (I don’t know how they do it, deal with cancer and somehow leave me smiling. I feel lucky to have them.)
They told me my chances. Told me that I need to alternate 3d mammograms and MRI’s every six months until I decided, when the time was right, to perhaps have a prophlactic double mastectomy. In time, I should also remove my ovaries, as this particular gene also raises my chances for ovarian cancer to high risk levels. They cannot screen for ovarian cancer as easily, and with the risk being so high, they fear they wouldn’t be able to find anything until it was too late.
So, today I went in for another mammogram. It’s fine, and I’m getting used to it, I suppose. Another test, learning the hospital like the back of my hand, another round of waiting, another appointment.
I consider myself so lucky that I CAN explore these options. That I have health insurance, that they cover these appointments. I’ve seen the pre-insurance bills, and the genetic test was nearly nine thousand dollars alone. I haven’t paid a dime. I consider myself lucky that I have the privilege of learning the hospital floor, able to read pamplets of new information, walk the halls to the next appointment, and barely look up. I know many women carry fears of cancers growing, but are unable to confront these due to insurance or money issues. As awful as it all is, I am so lucky.
I see this. I know this. Every six months, I wear this fear on my back, holding my breath that they will have news. I know what this waiting is. I know what that world looks like. One year ago, they found three tumors in my left breast and told me to wait six months for another MRI. I waited, trusting my doctors, but waited knowing that the tumors could grow inside me. Knowing that the next appointment could change everything. Thankfully, two tumors developed into cysts and the other is one that we can still watch.
I watched this fear in my mother as she waited. Watched as we waited for the results, every six months. Every three months. Blood tests, cat scans, MRI’s. Watching, waiting, watching, all the while swallowing the inevitable fact that it was only a matter of time.
I cannot do that. I don’t want to live like that. Watching, waiting, watching.
The team of doctors have told me that it’s my choice. You have a 50/50 shot, they say. We have you on close watch, they say. If it comes, we’ll remove it right away, they say. But I worry that, like my mother, they will catch it early and it will rear it’s head again. Bigger, stronger, harder, and it will take me away.
The reality of my situation is this: in one years time, I will have my breasts cut off. I will have reconstructive surgery. I will reduce my chances of breast cancer to 5%. I will turn 34.
It’s a major surgery. It’s a major healing time.
But it’s better than this fear that I carry. It’s better than thinking I only have a few years left, which is what I’ve been thinking for the past fifteen years. I’ll get cancer in my thirties and that’ll be it. This is scary, but this is hope.
As we go forward, scheduling the surgery and heading into the OR, I know that there will be a lot of opinions. A lot of thoughts shared. I know that we’ll have love (for which I also consider myself lucky). Please know that I’ve done research, considered the pros and cons for many years now, and will take this next step with confidence and hope for the future. We need support and love, listening ears, shoulders to cry on, playdates for Liam, the occasional meal, and gentle hugs (it will hurt for a while). We don’t need theories on alternative medicines, ideas on foods or recipes that cure cancer, or stories from NPR that shared an anecdotal story about a woman who beat cancer/Alzheimer’s/Parkinson’s with positive thinking. Just love, listening, and lots of support.
Not easy to share this. But it will be a big part of our life in the next couple years here. Thanks for reading and for loving us.