I've been trying for months to get the results of my genetic testing to see if I am a carrier of the BRAC1 or BRAC2 genetic mutation, i.e., the "breast cancer gene".
The test is $4,075 and I received news that I have an avenue that will allow me to get the results of the test. The very idea that there is a test out there that's results could help save my life and they won't tell me because of money? Drives me up a wall. But that is for another post. In as little as 7-10 days, I will know. This has been weighing heavily on me for many years. In fact, years ago, I went through the genetic counseling at UAMS that is recommended prior to this testing because of its emotional risks of "knowing the results" and then decided to bow out of taking the test.
At that time....my fears were that it was so new, I worried that insurance companies would discriminate (it is illegal now....but who knows what Obama may change!) or if I had the knowledge....would it worry me endlessly? Would I sit around and "wait to get cancer?" Would I rush out and have a double mastectomy to prevent cancer? I decided to live by faith and not have the test. That, and it was so pricey I just didn't move forward. You all know the rest of my story. Yes, I got cancer. But if I had known I had the gene, I can't tell you if I would have lived my life any differently. Hard to say.
Testing positive for the gene means having a lot of knowledge. The best most easy-to-read article that I've found is at the link below:
http://www.myriad.com/treating-diseases/hereditary-breast-cancer/
I learned a lot in researching this. Testing positive means that not only are you at a 50% higher risk than the general population of women of getting Breast cancer by the age of 50, and an 87% higher risk of getting it by age 70.....it also raises your risks of all female cancers by 44%. That is a pretty scary thing. In fact, if I test positively, I most likely will have to think about a hysterectomy soon. Those are odds I can't take the risk on. Also, you can be carriers without getting cancer. AND, males can be carriers too. It's not just a girl thing.
If I test negatively, its is certain that my children will NOT have the mutation. That is my hope. That is my prayer. But....if I test positively....there is a chance they will, as well as my brother, his children and my first cousins on my mom's side, and their children, etc......and that is knowledge that they may or may not want.
Because of my history....Nanny, Mamaw, Mom, and now me (two of us diagnosed before age 50). And the fact that my cancer was considered "triple negative" (tested negative for feeding from any of the female hormones....meaning no preventative therapies to date) my chances of having the gene are pretty high.
I've been pretty public about my medical journey. But it has been weighing on me that I need to consult with those close to me first before I just put it "out there" the results of my test should I test positively. As it affects many members of my family. And their children. Its just not fair to them for me to force my results on them. I have a choice to know. And I want to make sure that they, too, have the choice.
I've had years to prepare for this. They, have not. I recently reached out to them to please think about it. Pray about it. Asking for their thoughts. I so want to be an advocate for early detection. But I care more about them and wanted their blessings first. I wanted to approach them before I even knew the results myself. And I will be in full respect of their thoughts either way.
Many may not understand the emotional ties to having this kind of knowledge. To those I've approached -- two did not want to know the results. At least now. One of them was my own child. So that said, I will not be sharing my test results publically. I wanted to share this.....so that all women who have this history....anywhere within your family or close to you, to pray, research, and be aware of your feelings about knowing what's going on in your body.
I love my family so very much. And I hope this ugly disease is gone from us forever. This may give us a leg up in the fight! However, emotionally.....we all have to be ready.
Psalm 46:10 "Be still and know that I am God."
In Him,
Terri
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