Anyway, when you find out you have BRCA1 or 2 you go through many phases (at least I did) - fear, grief, and then a desperate need to understand & know everything about it. You suddenly have a team of doctors, you are placed on a prevention plan - though I swear to God my doctor called it my list of problems yesterday - which involves bi-annual screenings: ultrasounds, mammograms, MRIs, skin checks, blood tests. Let me tell you as someone who has never (knock on wood) had health issues it is terrifying. You go in for these tests and then you wait, wondering - is this the time they are going to call me? Is my time coming?
The other thing that happens is that your doctors give you lots of advice, advice based on sound science, but not personal experience. And if, like me, you do not live in a major metropolitan city, none of these doctors are BRCA experts. They all advise you to do the following: cut of your boobs, get new boobs, cut out your ovaries and tubes, go into immediate surgically induced menopause at 35. Does this sound appealing to anyone?! Now, let me be clear - I am terrified of getting cancer, especially ovarian cancer (there is no accurate screening for ovarian cancer, the research is not as well funded, the mortality rate is not pretty). I am terrified of my kids having to watch me go through radiation, surgery, chemo, and God forbid, death. But I can’t help but find myself being frustrated that my only option is to do all of this surgery - which I will inform you the recovery is up to 18 months. Not only that, but if you have ever seen reconstructed breasts - let me assure you, they are NOTHING like breasts after a boob job. And furthermore - what if I do all this, cut my breasts off, cut out my ovaries and tubes, and then get some other form of cancer, get hit by a bus tomorrow, whatever? We all die eventually...right?
So what do you do? What would you do? Well, I have chosen surveillance - I get it's the riskiest course of action. No one in my family has gotten breast cancer before 50, no one in my family has gotten ovarian cancer (that we know of - granted most have had hysterectomy). The cure rate for breast cancer is over 75% right now. Neither my aunt or my mum died of cancer, both are in remission. This is my course of action until 40, and I am at peace with it...mostly….My sister has chosen the same path.
When I say I am mostly at peace with it, it's time for my 6 month tests. Last time I had to do my ultrasound twice because they saw a tiny cyst which they knew was nothing but because of my BRCA status they had to watch it. I hate these tests - they are uncomfortable, they are cold, they are scary. I am at peace with my choice until they back me into that MRI tube, at which point it takes all of my strength (and knowledge that if I move I have to go back in the damn tube again!) not to break down and sob.
But I am so lucky - so lucky I know, so lucky I have a fantastic team of doctors that really care about me (plug for Kaiser here - especially my Dr. Ring!). I know that they are watching me like a hawk, they are making sure I do my testing, that they are advising me, being compassionate and impartial. I am lucky, I know my family history, I was given the opportunity to take this test, I know my risk, I make choices equipped with the latest and greatest information. I am lucky.
So as I prepare for this round of tests, that is what I take with me - and a positive mental attitude!
I am open to any and all BRCA related questions - Ask away!