Five Stages of BRCA Diagnosis

If you have made your way to my blog, chances are you are either friends/family clicking on my link from Facebook (Hi guys) or you Googled “Is _____ normal after BRCA diagnosis?” and my blog somehow popped up in your results.  That “blank” can be any number of things, but today we are going to talk about all the feelings that go along with being told you have this mutation. There are quite a few and there is no linear schedule in which you will feel one at a time, always one emotion before the other.  One morning you will wake up refusing to believe it and another you will wake up and not get out of bed because you just want to cry.  We have been taught that there are five stages of grief (denial, anger, bargaining, depression and acceptance) so I have broken it down into five as well.

  1. Shock – This one, much like denial when you are grieving (because let’s face it, you are kind of grieving here), will always hit you first.  I remember I was sitting at my desk when I got the call from my PCP telling me I tested positive for the BRCA1 mutation.  Her next words to me were, “Sam… Are you there?” because I was rendered speechless and literally had no words to respond with.  She took me through the different options going forward; surgical, heavy monitoring, etc and I just sat there listening in a half conscious haze.  Before I even took the test, my husband and I decided together that I would go ahead with surgery should the test come back positive, but when my doctor mentioned monitoring I remember my brain thinking, “Well, monitoring isn’t so bad, we will be fine with that” because I just couldn’t accept that I actually had to go through with it.  Monitoring is a good option for some, but it wasn’t the right one for me considering my history and I had no updated medical information on my family members that did have cancer.  I am a “better safe than sorry” kinda girl.
  2. Guilt – Yes, you will feel guilt if you have caught this mutation before it can unleash cancer upon you.  Whenever you read about a horrible car accident or tragedy and there is only one survivor, that person will talk about “survivor’s guilt”.  In this instance, you are the survivor and cancer is the horrible car accident and you feel guilty for being able to save yourself from it when so many people before you have had to suffer the consequences of this insidious disease.  If you have children, you will feel a soul crushing, heavy as lead sense of guilt because, sadly, there is a 50/50 chance that you have passed this mutation onto them.  I have two daughters too. So yeah… that was fun to go through.  Finally, once you make this news public, you will get a lot of sympathy and support and you will even feel guilty about accepting it because you don’t actually have cancer and all this energy should be spent on someone who really needs it.  You need to put that out of your head because if you are like me and taking the surgical route, you WILL need the support.
  3. Fear – “Fear is the path to the dark side.”  Yoda said it best.  Fear is a sneaky little bastard that creeps up on you when you are doing the most mundane of tasks and takes your breath away.  I have never been through major surgery.  I remember walking into my bathroom and stopping dead in my tracks at the idea of being put under general anesthesia.  The idea that I might not be around to dance with my husband at my daughters’ weddings if I didn’t act on this new information crippled me.  With fear, the only real thing you can do is act on your diagnosis and tell yourself that you are reducing your risk by having the surgeries and that you don’t have to be afraid.
  4. Anger – You will feel just plain pissed off that this is happening to you.  I remember thinking, “I am a good person and there are horrible people out there that are perfectly healthy, why the hell is this happening to me?”  Anger is perfectly normal, but you have to keep it in check because it can affect relationships, even with people who are doing everything to help you through this.  For me, I get over the anger by reminding myself that this information is a gift and it is now allowing me to take my risk below a person with no genetic mutation when it comes to breast and ovarian cancer.  It might take a couple surgeries to get there but hey, I’ll get new boobs and no more periods in the process.
  5. Action – Once you finish the pity party that you will inevitably have for yourself (Ben and Jerry’s, party of one?) and pull yourself up by the boot straps, you will be driven with a new found motivation to act.  Even 20 years ago, people did not have this information and we were told that cancer was not genetic.  It sucks that our bodies were made differently than others, but this information is a gift.  Do something with it.  Whether you are going in for surgery or just closely monitoring, you have to choose to do something with your test results.  Sticking your head in the sand simply doesn’t do anything productive.

Are there a lot more emotions you could be feeling right now? Sure, but we would be here all day.  My point is that you will go through a lot in your head and it is all perfectly normal and you are not alone.  Check out the FORCE website for resources and even make an appointment with your local genetic counselor who has a lot of experience dealing with cases like ours.  At the end of the day, you just have to keep on keeping on.  One positive feeling that comes from this mess:  You appreciate everything in your life a little more.  You hug your kids tighter and savor that cup of coffee in the morning and take a minute to watch the sunset at the end of the day.  Hold on to that, because that feeling of gratitude will get you to the other side of this with your sanity intact… At least I hope.  Stay tuned for that.


3 thoughts on “Five Stages of BRCA Diagnosis

  1. Sam I have been reading and following your blog. You and your precious family are in my prayers. My prayers are wrapped in Big Hugs! You are a very strong woman and an inspiration to many. GOD will see you through this and I’m believing as well as many others for a complete miracle.
    Sally Yaeger
    from Warsaw, MO
    (I was known to your husband as Miss Snyder. I was his 1st grade teacher and very dear friends with the Sunderwirth’s in Osceola. I always also friends with George and Brenda.)

    Liked by 1 person

  2. I’ve been following along, reading your posts, and I think what you are doing is brave. One of my favorite artists, Keith Haring, did a painting in the late 80s/early 90s. It says, Ignorance equals Fear. Silence equals Death. I’ve had a lithograph of it since 1992. And whatever you struggle with, it’s true. Education and enlightenment are key. And then you put on your armor and kick the shit out of it. Otherwise, it kicks you.

    Your blog is definitely a reminder of Haring’s piece. Thank you for creating awareness and starting the conversation. Hopefully more people will let go of fear and get tested.

    Liked by 1 person

  3. Pingback: More… | An Unfortunate Inheritance

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