Wednesday, July 5, 2017

Waiting and hoping and wishing and praying



Tom Petty didn't lie when he said the waiting is the hardest part.  On June 8th I had my yearly exam. We all know that is about a 2 on the fun scale.  Oh, and I got the bonus of a bum exam and she didn't even buy me dinner first which I require if you're going to attempt to be in the area.  She said everything looked good on all fronts (err... and backs) including my blood pressure which I was worried about because I was stressed trying to find the new office and flustered filling out paperwork I didn't have time to complete.  120/80 which is elevated for me but right on target according to the nurse.

One thing that came up afterward was she mentioned about my family history including ovarian and pancreatic cancer.  She asked if the living relative that survived the OC had the BRCA testing done we discussed last year because it's way more accurate from the person who had cancer.  Well, I mentioned it twice and never heard anything so I assume she didn't get it done despite her intention to do so.  She seemed to think that it was important for me to do because the two of those are such oddball cancers to get in one family so close in relation and it could help the women in my family to know whether they should get tested as well.  It's a simple spit test that they send in and insurance usually covers it.  (Though I didn't expect mine to cover because they suck but even out of pocket, it's $250 which is much better than $1500-3000 it was a few years ago!)  Obviously, I was praying for a negative on that especially after doing so much research on what a positive result could mean.

The ones that scare me the most are pancreatic because once you have that, it's pretty much over. Ovarian cancer is a close second because there are no screenings in place that can detect it early so by the time you have symptoms, you can be further along.  So I got to hang out for a month imagining the worst and if I need to be scheduling ovary removal surgery as a preventative which can also reduce the risk of breast cancer.  (We don't have breast cancer in our family but still.)  Given the Mr and I have chosen not to have kids this shouldn't be a big deal but being catapulted into menopause at least 8 years earlier isn't high on my to do list because I've heard the horror stories.  So to say I have been a little terrified is an understatement.  I tried not to read too much but I read enough from reputable sources.

There is this part of me that says "you shouldn't have done this test because there's not much more you can do than you're already doing" and another part says "well, preventative chemo or surgery could be in your future" and just typing those words brought me to tears.  Look, I know people are going through much worse and I know that just because my risk may be higher that it doesn't necessarily mean it'll turn into cancer but the numbers get scarily higher with a positive.  So I felt a little paralyzed by the unknown and praying I didn't have to have an "options" talk with the gynie upon getting the results.  All kinds of thoughts swirling and I tried not to think about it but it's hard because it was just like that 2-week wait with the callback mammogram.  I didn't think that with those in our family that it was out of scope for me and figured I could be at higher risk for those but cripes talk about the two worst and most silent cancers to have in your family tree!

Last Friday I got my results.

When the actual doctor takes the time out to make the phone call, that gives you quite the pit in your stomach which is what the Mr got when he answered the phone and what I got when I realized it was her and not her staff.  I was thankful she happily uttered the word: Negative.  I shed some tears and all of my genetic marker for breast, ovarian or pancreatic cancers were negative which is obviously very positive in the scheme of things.  I breathed quite a sigh of relief because I was beginning to prepare myself for the possibilities of prevention even figuring out when I would try to schedule my surgery to be recovered for the holidays.  There is still a chance that my mom could have it because I could've just lucked out and not gotten it from her in that 50% roll of the dice.  I have encouraged her to get tested.

If you have two or more uncommon cancers in your family, you will likely qualify to have insurance cover your BRCA testing.  You literally spit in a tube so it's non-invasive.  It is important to know that the insurance company will not receive your results and they cannot discriminate against health care for you because of predisposition because it's not a pre-existing condition.  It's also important to remember that if you are BRCA positive, this does not mean you will get cancer!  It means that your risk goes up significantly compared to the general population and there are many different courses of action you can take from just more aggressive monitoring to surgery to greatly reduce your risk.  Don't let the fear of being BRCA positive stop you from taking the test especially if you're younger and can have more options where children are concerned.  Your gynecologist can explain more and there are genetic counselors that can answer questions as well depending on the company that performs the testing.

For more information about what a BRCA positive diagnosis means in terms of percentages vs the general population, click here.

Have you had BRCA testing done?

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12 comments:

  1. I am so thankful that it's negative of course. As with most things, the waiting is the hardest part. It was nice of her to call you and take the time to talk about it though as that is so hard to find these days. Now if we can just get the rest of your family to get their tests done. I think it is best to at least know where you stand on these types of things so that you can lay out your best options from there, which is exactly what you were doing had the results been different.

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    1. It was very nice of her to call personally and shows to her bedside manner. Thank you for your support and concern especially that first weekend when I was a heap. I love you!

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  2. So glad to see the word negative!
    Held my breath reading this.
    Have a fabulous day!

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    1. Thanks Dawn! I held my breath for about 23 days! LOL

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  3. I'm so glad for you that it came back negative. I have breast cancer in my family so I was encouraged to get testing, but so far I have chosen not to. Being positive doesn't mean that I am for sure going to get cancer, and being negative doesn't meant that I am for sure not going to. The testing doesn't change my actual chances at all. I may change my mind and get the testing, but so far I have not.

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    1. The way it was explained to me was the only thing it changes is your knowledge and therefore the potential to greatly reduce the risk through various means. It's a personal preference for sure.

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  4. So glad to hear you are negative! These health issues as we get older are no joke and have raised my blood pressure for sure.

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    1. Thanks! Yes, it really sucks to have to worry about these issues. Ignorance was bliss in the teens and twenties!

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  5. Super happy for you. I haven't been tested but you have encouraged me to get it done:). Have a blessed day. P.S. love the quote at the top.

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    1. I'm so happy to hear that! It really is about being proactive and being able to make decisions to greatly reduce the risk by as much as 90% in some cases!

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  6. I had the blood test (not spit) kind done because of family history of breast and ovarian. (And I have two daughters. And there is also ovarian on my husband's side.) And all that came back normal. )My daughters will also be tested.)

    But I tested positive for GI cancer risk. Which we do not know of any past family history. (It is possible family members died undiagnosed. Or they died of something else first.) But one of my daughters has GI issues and one of the questions they always ask is family history. Previously we said no, now it is yes. Both my other kids had colon scopes after her diagnosis just to be safe. They are fine.

    And we have written a health family tree. It looks like a genealogy tree, but has any diagnosis and cause of death noted with each name. And I encourage every family to make one.

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    1. That is exactly a good reason to have the test done. Now you have an awareness and they can actually do endoscopies for screenings now that they are aware of your genetic testing. Also good for your daughter's doc to be aware of that test result for her future care. That family tree is a great idea. I will have to do work on my dad's side for sure since I have very little knowledge about that side. Thanks for sharing that!

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