Part 2: A Decision
[author] [author_image timthumb='on']http://www.periwinklepapillon.com/wp-content/uploads/2011/07/sara_profile_pic.jpg[/author_image] [author_info]This is Part 2 of a series I am writing about my decision to get tested for the BRCA 1 & 2 genes. For Part 1: Girl Parts please click here.
These posts highlight my journey in deciding to get genetic testing for the BRCA 1 and 2 genes, the breast cancer gene markers. It’s personal in nature and I hope also a little bit educational. If anyone has any questions about the process please don’t hesitate to contact me. I’d be happy to chat with anyone about this.[/author_info] [/author]
I consider myself a thorough person as I don’t usually make rash decisions. ‘Usually’ because I can’t say that my decision to get a tattoo at age 16 was all that premeditated. For the most part I will research the crap out of something before making a decision. This was true for my decision to finally get tested for the BRCA 1 & 2 genes, the breast and ovarian cancer markers.
As I mentioned before, when I discovered the sex of my first baby was a little girl, I panicked. Girl parts to me meant trouble. Lots of trouble. Breasts could one day mean cancerand that word had been prominent through out my mom’s own history.
The worst part was now she was gone and aside from confiding in my husband, I carried this guilt-leaden fear in silence. I was supposed to be full of joy and yet I was full of trepidation. I was scared, pissed and angry. My mother’s death and its cause was overshawdoing what should have been one of the happiest moments of my life. At least if she was here I could confide in her or be reassured by her. But the reality was the cells in her girl parts had mutated and killed her. Possibly because of her genetic history.
Breast Cancer Cell - source: Alternative Cancer.net
My only way to take charge of the situation was to find out once and for all if I carried the genes. And so began my research.
I will add here that this was a long journey from research to action. I did not, for reasons I will touch upon, actually get the test done for another 4 years. See what I mean by thorough? I took my time and carefully weighed what getting the test would mean for me.
Having a baby wasn’t the first time I had thought about getting genetic testing, at least it was not the first time I had heard about it.
I had gone to almost all of my mother’s doctor’s appointments. I grew attached to all of her “teams” and because she was so friendly their affection for her usually spilled over onto me. This is how annoyingly popular she was: when she was admitted for pneumonia the Infusion Room nurses hung a sign in the window that said: “Get ‘Em Susan!” because her room faced their view. They looked out for her.
They looked out for me too. I mention this because it was at an appointment to discuss her prognosis that my future health was brought up. After the grim news and my mother’s subsequent jokes about getting her affairs in order and high-tailing it to a beach with a margarita, the doctor asked if my mother would consider get genetic testing.
When he asked her, he was looking directly at me.
Without hesitation my mother said no.
She couldn’t handle that information. And I knew exactly what she meant. She couldn’t handle dealing with her own mortality AND potentially knowing she had passed it on to her kids. That would be too much.
We never mentioned it again.
For years when I would meet with my own team of doctors and they would ask me if I would consider getting tested for the breast cancer genes, my answer was always the same: “Why? What would I do differently?” Nobody had a good answer for me – nobody said: well for starters you could have a double mastectomy.
Source: The Liberal Heretic
That was until my OBGYN brought it up. She had also been my mother’s gynecologist as well and knew our family history. Her recommendation went something like this: “Have your kids early. Have’em quick and then when you are done, rip it all OUT.”
Your girl parts she meant.
Um ok… That was a little jarring to hear.
[Side note: I loved my OB. I think she was probably a little softer spoken than what I quoted above but she was no bullshit and extremely thorough. She insisted my mom get a second test and that's how we discovered she had endometrial cancer. Oh yeah did I tell you my mom had cancer 4 times? Who gets cancer four times?!?]
This suggestion was not completely accepted by all my doctors. Radical was a word some used. Unnecessary was another. Insurance would never cover it others said. The medical community was not on the same page with surgery as a preventive measure against breast cancer unless… Unless… you tested positive for the genes.
If you had the gene then this would all make sense.
Take out the parts before their cells mutate.
{ 3 comments… read them below or add one }
wow, Sara. My mom had breast cancer too. She is 15 years out and doing well. My mom-in-law died from breast cancer. It sucks how many people this has killed. Shouldn’t be. I too am worried about my daughter. She has it on both sides. My mother’s mom died from it and my husband’s maternal grandmother ALSO died from it. It scares the shit out of me for my girl. 2 great grandmothers and two grandmothers. I am apart of a study at John’s Hopkins as well as MACCGEN which is a Maryland based study through Hopkins. My genetic counseling said that I have as high a chance as the next person and that I should be okay. It used to freak me out that I will get it, but now I worry for my daughter. Whatever you decide, I know it will be the best for you! I have a few patients (one was 32 when she was dx with bc) who had a double mastectomy and uterus removed. It just sucks. My aunt had a double mastectomy in her 40′s and she has not gotten cancer. I think in her case, it worked. HAng in there!!!
great post, sara. i don’t know much about this process (though i am familiar with genetic testing for bc and a fe of the options available), so i’m interested to learn about it through your story. thanks for sharing!
Just read part 1, and now this. I know you know the facts, jack. And you will make your own choice. A well thought out choice. I’m just pissed at the world for even having this shit go on – that you have to make this decision, you know? BUT. You know the pictures I sent you? We do what we do for the little girls. For your little girl. And my nieces. And hell, even my boys (as you say, it can affect men, too). Maybe one day they won’t have to hear the words breast cancer. That’s a damn fine goal.