This morning I found out that I tested positive for the BRCA 1 gene mutation.
I am devastated.
Nothing else really matters now. None of the MRI biopsies, at least. I have a lot more to find out, but I *do* know that I will likely be getting a double mastectomy at some point in my life...SOON...and that I will likely need to get my ovaries removed in my 40s.
Immediately after I found out I called Joe, sobbing. He asked me what I wanted to do and where he could meet me. It was 10:30am -- I was on a conference call when I got the call on my mobile. I told him, "Let's get together at lunch." After I hung up with him, called my mother, and then realized the reality of all of this, I just left work for the day. Picked him up and had him drive me home.
I have never cried more than I cried this morning. I'm still full of tears.
The reality is this:
I will still get a lumpectomy this Wednesday. They will still check my lymph node status at that time. I will still go through IVF and, according to Virginia, will go through "as many cycles as I need" to get enough samples to make sure that they can do the genetic testing on those samples to make sure I don't have children with this mutation.
Then I will have chemo.
After chemo, I have a choice to make.
Do I get a double mastectomy and reconstruction then (as prevention) or have radiation therapy. I will likely choose the double mastectomy and reconstruction, but emotionally, it's hard for me to put that in writing. I can't accept that reality just yet.
That will be in March or April or May or June.
Today was the worst day of my life so far.
March, April, May or June will likely contain the worst day of my life in the future.
After those horrible days have passed, we will hopefully get pregnant in a couple of years. And then, if we are lucky, get pregnant again.
Then, in my early 40s, I will need my ovaries removed. The BRCA 1 mutation accounts for virtually all ovarian cancer risk. I am at high risk unless those get removed. I will comply, but with significant emotional remorse. I will have a private funeral for all that is feminine and womanly about me. I will cry. And cry. And cry.
I hate this disease.
I will be on hormone therapy for 10 years and then experience true menopause.
I am heartbroken.
Some more details:
BRCA 1 mutation cancer doesn't typically spread through the lymph nodes. It spreads through the blood. That sucks because it's harder to figure out if it is floating around my body. That's what chemo is for, I guess. So, I am assuming that even if my lymph node status is negative, they are going to chemo the hell out of me. Which is fine, but not fine at the same time. I hope to hell it's not in my bones. Pray that it is not in my bones. Or my liver.
Who did I get this mutation from?
The genetic counselor is indicating that they think I got this mutation from my father's side.
Mom's Side (Probably Not)
Even though my mother's mother (maternal grandmother) died from breast cancer, she was 65 when she was diagnosed and 67 when she died from it. That was in 1967. There was no real treatment for it then. Apparently *her* mother also died from breast cancer, but not until she was 90. And, my mother has had no signs of breast cancer her entire life. So, given the age of the women on my mother's side prior to cancer diagnoses / death, it is likely not from their side
Father's Side (That's Their Guess)
Since my father is one of three boys and no girls, the doctors feel that there was enough "suspicion" on that side to warrant some concern of "above 10%" chance of this mutation on my end. My dad is the oldest of three brothers. He is currently 73. Both of his brothers are still living. Each of my father's brothers have one daughter and one son. One of the daughters (my cousin) has two daughters. But my dad's mother lived until 72 and died of bladder cancer. In addition, she was a serious smoker. But my father's father also had no female siblings. So there is more suspicion there as well, because there is just not a lot of "female information" on that side.
So, if you haven't already picked this up, men can carry the mutation.
The next step for my family is for all my siblings and my mother to get tested for the BRCA 1 mutation as soon as possible. I really hope they are ALL negative. If that is the case, by process of elimination, it is coming from my father's side and my father is positive. If he is positive, his brothers should also be tested.
This mutation does not skip generations. You need to have it in order to pass it down. There is a 50% chance it gets passed down from a carrier. I just love how I am the evolutionary reject here. Please, Science, help me *not* to be the runt of the evolutionary litter.
I really, really hope I am the outlier, here. I hate to think of my siblings or cousins having to deal with this...not to mention all their beautiful children (all girls). If there is ever a time to pray for the children, it is now.
I believe in the power of science and the wonders that it has brought to us.
I am lucky to live in a time where this mutation can be detected and I can take swift action to lower my risk of dying from this disease and preventing it for my relatives and, if I am lucky, for my children.
I have faith in medicine. But I still believe that this is so, so much more we don't know yet.
Your thoughts and prayers are appreciated -- not just for me -- but for my entire family.
Peace, love, joy, and health.
Bonnie