I woke up this morning knowing I would be getting the official phone call from my genetic counsellor telling me whether or not I have the mutated
BRCA1 gene.
Up until now I have been told that it is pretty much a for sure thing. So why does it bother me so much? Why did I feel the dread of the call? Why did it wake me up, reminiscent of last December when I was told I had cancer?
I guess it's because it affects my kids and other family members. It takes cancer to that next level in my life. "Go on, fuck with
me cancer, I can take it...but leave my family alone."
So the phone eventually rang.
Straight to the point she went.
"You, as we suspected, have the same genetic mutation as your mother. You are
BRCA1 positive."
Instant tears.
Instant fears.
I did get some interesting things out of the rest of our conversation though.
She began talking to me about my ovaries. I should have them removed because there is a direct link with this gene and ovarian cancer and my risk is greatly increased. I already knew all of this...
I told her I went to see my Gynecologist last week and he mentioned the new study that Ovarian cancer actually may start in the fallopian tubes, and so it may be a possibility I could just have my tubes out, which would spare me from early menopause (which in itself carries a lot of health issues and side effects). To avoid removing my ovaries would be fantastic in my eyes, so I mentioned it to the woman on the phone.
She told me I was in fantastic hands if my
GYN was researching this option for me, and although the study is so new and there hasn't been any long term proof that it will work, it is definitely looking like a possible option.
I will wait until my
GYN doc calls me back after consulting with his colleagues on the issue. If it seems like a realistic solution, I will go for it. I can always have my ovaries out later as well, closer to the time I would naturally go into menopause. that way it could be a win/win situation.
Another good thing I got out of our conversation was that it isn't entirely IMPOSSIBLE for me to test my children for the gene before they are 18.
Initially I was told that if I tested positive, there would be a 50% chance each child could have the gene. I was told however, that I couldn't have them tested. They would grow up not knowing and then they could make that decision on their own when they turn legal age. the more I thought about this, I didn't like it. I asked my genetic counsellor if this was a set in stone thing. Is there ANY way I could have them tested sooner rather than later? She proceed to lightly dance around the question trying to explain that they don't like to do it, that is has been done and has proven to be a negative thing. Either the child grows up and says they didn't want to know and didn't have a say in the matter or the positive results cause the parent to overly control the child's life and so on. I felt I needed to explain my feelings.
I told her that I want to know because I am currently living in sadness. When I look at my children I already feel like they have the gene and I am currently living this way. I stress when they want sugar, I know I will cringe when they want an alcoholic drink and so on. If I KNEW for certain, I would A) either be relieved that they tested negative and can let go a bit, though I would still encourage a healthy lifestyle...or B) if they tested positive, I would educate myself even further and continue to put my energy into surrounding them in a healthy world.
My G.C said to me, "What if Lily grows up and doesn't want to know."
I told her that I wouldn't let either child know the results, I wouldn't even let them know that I have had the testing done. I would let them grow up knowing there is a chance they could have this gene and then when they are old enough they can decide if they want the test. If they came to me and said they wanted to know, I would then tell them, I already have the results and sit them down and tell them.
Then the G.C said, "What if you knew Lily was positive and she was getting to the age where she should have the prophylactic surgery (preventative mastectomy they recommend at age 25-45) and she wasn't wanting to know her results?"
I told her that I respect
every one's choice in knowing the results or not. I would respect my daughter's choice, but I would let her know that she has to always be proactive and have consistent screening,
mamos, ultrasounds and physical exams. I told her that even if she did know she was gene positive, she could choose not to have the surgery and even though I strongly advocate in favor of the surgery, I would respect her choice and do the same thing....push her to have early screenings. I told her even if she was tested and was negative, I would push her to have screenings and be proactive.
The conversation ended with my G.C telling me she will move my request to have my kids tested further to the board of
geneticists. They will have to grill me and play a game of ethics and then they will make a decision whether they will test them or not.
It is definitely an interesting topic for debate.
I know she doesn't know me, and this info in the wrong parents hands could be a disaster and essentially traumatize a child. But I am confident with the situation and what I would do with the info. I know that I would be respectful and responsible with the information.
I believe the information would benefit me and my children in helping us live the healthiest lifestyles possible.
So today was the official call.
The snow is falling, just like it was a year ago when this whirlwind began. Saturday is the one year anniversary of my first lumpectomy...the unknown surgery, not knowing if I had cancer or not.
I don't forget the feelings I had.
They are as clear to me today as they were then.
All senses fired. Crystal clear and defined.
And though I am grateful for my health one year later, I can't help but wince when something like a song, a Christmas ornament or a snowflake triggers those memories.
(this was my song last year)
