Tuesday, February 19, 2013

And May The Odds Be Ever In Your Favour



Six months ago I had blood drawn to do a genetic test to determine if it was a gene that resulted in me getting breast cancer. The call came today that the results were in. And in typical Canadian medical system fashion – I have to wait to find out they are positive or negative.

For the month of February, every time I've see "BC Cancer Agency" on my call display I have felt a little sick and started to shake when answering the phone. Not because it reminds me of appointments, chemo or cancer in general... but because it could be THE CALL. The one I got today. Where the person on the other end of the line knows whether I am positive or negative for the breast cancer gene.

This morning I literally trembled as the woman told me that the results were in and that it was up to me if I wanted to know over the phone or in person. I thought it was gonna happen right then and there. But then the woman proceeded to tell me that it will be the Genetic Counsellor who gives me the results and she isn't available to speak to me until Friday, February 22 at 10am.

Awesome.

I've known since diagnosis that I was getting this test. I've been well aware of it but I didn't realize until this month how much anxiety and stress it brings at the thought of it being told it is positive. To me being positive for the gene would be like having another diagnosis. It would be another horrible blow.

For most woman, they find out this bit of news quite early in their cancer journey... they don't have to wait as long as we do in Canada. I think the build up of it has made it that much more upsetting for me and adds that much more anxiety. It truly feels like I am on the edge of my seat waiting to find out if I  have more horrible news to accept.

So there is a 12% chance I have this breast cancer gene. (Known as either BRCA1 or BRCA2.) The chances of it being positive are slim. But it's not impossible. I have encountered many woman under 35 who were told that it was very unlikely to be genetic, but it ended up that it was. I could be one of the 120 in 1000. Heck, I was one of the 2% that got breast cancer under 30. It's hard for me to be optimistic.

I guess I am just trying not to get my hopes up.

For those who don't know about the gene: Being BRCA positive means you have up to an 80% risk of developing breast cancer in your lifetime. It also means that the risk for ovarian cancer is high as well. Being positive would give me an answer to the question: "Why did I get breast cancer?" But I'd take the not knowing what caused it over it being genetic hands down.

If it is positive the following would be recommended and done:
  • A blood test would be done on my Dad to see if it came from my Mamka (since she is the only one in my family history who has had breast cancer)
  • Another mastectomy would be done
  • A hysterectomy would be highly recommended (according to my oncologist and surgeon)
Read – it would mean a future with no biological children.

You can see why this news, if it is positive, would be so devastating to me.

A side-note that I will mention cause I can imagine some people might be shaking their heads at me: Many woman who are BRCA+ have had and do continue to have children of their own. It doesn't mean we can't have children. The choice is ours. But Mike and I have talked this over and decided that if ends up that I am BRCA+ we wouldn't want to take the risk of passing the gene onto our children. (There is a 50/50 chance of this) I could never knowingly put my child a risk.

So... we wait for Friday's results. Once again with the waiting...

I know I can't change the outcome. I know that no amount of me being positive is going to change the results if it is BRCA+... but I can try to put it out of my mind this week. And I can try to not worry about what is not in my control.

Easier said than done.


5 comments:

  1. Hey Ashley, I can't believe they will make you wait for the results. That is insane. I also didn't realize it would mean another mastectomy and possible hysterectomy. I will be thinking of you constantly and praying that it is negative with a big fat N! No gene for you, no more hell for you.
    Hugs,
    Michelle

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  2. Hi Ashley, I tried to comment on this earlier but couldn't from either my mobile or ipad... mobile devices are so frustrating when it comes to commenting on blogs!
    Anyway, I just wanted to say that my geneticist told me if I tested positive I wouldn't have to have a hysterectomy until I was in my 40s. I know it doesn't alter whether you would have children or not because I agree with you - I had decided I wouldn't have children either because of the risk of passing it on to the kids. But it does mean that you wouldn't have to have that particular operation immediately and you'd have another decade to think about it!
    My chance of having the gene mutation was 20% and I tested negative... yours is 12% so I have my fingers mentally crossed for you that it'll be a big fat negative!
    And in the worst case scenario, you will have found out something that you have the power to control from that point on - i.e. you'd have the operations and you'd be in control of it. I think having that control is super important, whichever way it goes, because choosing not to find out would leave you in a much more vulnerable position.
    Anyway, enough rambling, sorry! Roll on Friday and positive thinking! xxx

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  3. My dear friend, I'm so sorry that you have to actually wait that long! I agree with the comments above.. you did this test so you would be in control again. No matter the outcome. You will be in control, making the right decisions and you can do this. I'm always here for you if you want to talk to somebody living uhm well not so nearby ;) I am thinking of you and keeping my fingers crossed!!

    I haven't even done the test myself yet, but I think we have to wait for about three months over here. I decided to wait because I have such a long year ahead of me with the Herceptin etc. Maybe when that is all over I will take the test. I don't know. But I agree with you on being BRCA+ and not taking the risk of passing the gene onto your children. I could never take a risk like that!

    Friday is my next chemo day (guess we're both having a nerve wrecking day) but I'll be thinking of you! XX HUGS

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  4. Good luck to you, Ashley. I hope the test shows no genetic link. ~Catherine

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  5. Hi Ashley thinking of you today and praying for good news!

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