Wednesday, October 21, 2015

BRCA Genetic Testing: My Experience with the Ups and Downs of Waiting for Results

As a note up front: I eventually found out that I tested negative. I am posting this because while I went through this, I wanted as much information as I could find about the testing process. Not all testing is done in the same way, but I give you my experience in case you are interested. If you do test positive, search around and you will find some great blogs that detail everything certain women have been through. Information is power.

This is one of those posts you debate with yourself about putting out there, but today I decided that I would go ahead and share my experience with you simply because I was desperate for information when my doctor told me I needed to have the BRCA genetic test.

Back in August, I went for my usual yearly exam, and while filling out the usual paperwork, I noticed that my doctor's office had added a new information gathering sheet. The form asked for information about family history of cancer, and some of the questions were really specific--especially when it came to cancers like ovarian, breast, colon, and others. I had an idea that this was probably a way to find people who qualified for genetic testing, but I didn't think too much about it all.

I do have family members who have died of cancer. My paternal great grandmother had ovarian cancer and died before the age of 40. A great aunt on my mother's side had breast cancer, and another cousin on my mother's side had colon cancer. I assume there are probably other family members out there who had cancer, but I don't know who they are.

Anyway, my doctor came into the room. He had already gone through the sheet's information, and he told me he wanted me to be tested for the BRCA mutation. He explained about what would happen (a simple blood test), insurance would cover it because I qualify, and what would happen depending upon my results.

For those of you who don't know what BRCA testing is or what it tests for, you can get more information here: BRCA 1 and BRCA 2

Results are never universally simple if you have the mutation, and there are all kinds of options depending upon what they find, but my doctor told me that the results, if positive, could lead to me needing significant surgeries to prevent cancer--and I would need to have these sooner rather than later, because I am pushing 40.

Anyway, not sure that I would recommend that a doctor go into all of this with every patient, because it can seriously freak you out. I, on the other hand, am big into doing anything to prevent such outcomes, so hearing all of this actually made me feel better. I kind of went into the test by looking at it as a win-win situation: If I have the mutation, great--I can do something. If I don't, great--I can keep my schedule open for things other than surgery.

If this sounds all peaceful and calm to you...well, it was. I felt that way for a good 48 hours. Then, I started to panic with all of the "what if" questions. What if I had it? Would I be able to cope with all of this? I would do what I had to do, but how would we deal with it? (Those of you who know me well know that I have an unusual family situation...and dealing with two sick people would not be a good thing.) I wasn't afraid of surgery, but I was afraid of how I would cope with getting it all done (which might sound really odd, I guess).

The doctor told me all of this on a Monday. I came back to the office on a Thursday for the "simple blood test." My test was done through Myriad Genetics, and I don't know how other tests go, but this one took quite a bit of blood. I was thinking they would take a vial like they do when you have your blood drawn as usual, but I want to tell you (in case you are having this done) that the vial is much larger. I am fine with needles, and the test didn't hurt at all. But I wasn't prepared for the length of time it took. I keep waiting for it to be over, and finally I looked down (as I was starting to feel a little woozy) and realized what a big vial it was! Anyway, just be prepared. You don't feel it, but it is odd.

This was the same day, I might add, that I started feeling panicked. I wasn't at ease at all, and I just wanted out of there. I had a meltdown that night (my poor mom...ugh...bless her), and finally just resolved myself to being a nervous wreck.

Anyway, the nurse told me it would be about ten days before they got the results back. In the meantime, if the folks at Myriad saw that my insurance wouldn't cover the test or if I would have to pay more than around $350 for the test, they would call before processing the sample.

So, I waited. Almost a week later, as I was driving out of town for a meeting, I got a call from a number I didn't recognize. I didn't answer, but listened to the voicemail. It was a lady at Myriad asking me to call her. When I did, she told me that she didn't think I would qualify for insurance coverage because no one who had cancer was a first or second degree relative.

And this is where I come to my most problematic reactions to this whole testing thing: I've been told I need the test. I've been told outcomes. I've been nervous. And now I'm told I probably don't qualify.

Out of pocket expense for the test if I wanted to pay for it? 

Nearly $4000. 

Yep. People. I work for a nonprofit and have student loan debt. What the what? The problem is, I now had the question: "Well, if I don't take the test, and I do have the mutation, and I never did anything to stop me from getting cancer and I did get cancer...how would I feel about that?" I felt confused and trapped and without a lot of information. Did I really need the test? I don't know about you, but $4000 is a lot of money for me.

So, the very nice lady at Myriad (she was awesome) told me she would process the request for payment to the insurance provider, just to see what would happen, but it would take about 10 days to get a response. She also told me that if I decided to take the test even if the insurance didn't cover it, Myriad would work with me to get a payment plan I could live with. But I was still confused and gradually became a bit angry about all of it.

So, another ten days passed. My nervousness lessened. I looked at the situation logically: Usually you see patterns of cancer, and we don't really have that in the family. My grandmother and her daughters are fine. Most ovarian cancers are caused by unknown reasons. And, most importantly (and I can't stress this enough), I went back to my "This test is a win-win" attitude again. Because it really is, when you think about it. And, yes, in spite of all of this, I had decided to pay for the test, because I can't deal with the idea that I "might" have a ticking time bomb that I could deactivate in some way.

Well, ten days came and went. Nothing.

Twenty days. Nothing.

I actually started to forget about it.

Sometime in mid-September, I received a note from my insurance company. They were approving the test. I hadn't heard from anyone at Myriad again, so I just assumed this would take place pretty quickly. I guess in the grand scheme of things it did, but it didn't feel that way.

Finally, in early October, I got the news that I am negative for the mutation. Very good news, of course, but what a journey to find that out. I really did dread the phone ringing, because I had to mentally prepare myself for whatever news I got, you know? When I finally did see my doctor's office name pop up on caller ID, I had a moment of panic again, but then I reminded myself (before answering) that regardless of the results, I would get through it and everything would be fine. Because it would have been.

I think my biggest fear was having to put my immediate family and household through all of that. It is hard enough when we have to take the dog in for her vet visits. How would we manage with me in the hospital for extended periods of time and a lengthy recovery? 

Still, I would have faced it somehow, and it would have been fine in the end.

So, I write this post to put another resource out there for anyone who is waiting for their BRCA results. Each situation is unique, and the circumstances under which we test are unique. Results will vary. But we do have to keep in mind that knowing is definitely better than not knowing. And, especially for those of you who have children (boys and girls, by the way...because boys can carry, too), and you qualify for testing, you need to know so that they know too. And so that you can do everything you can to be around those you love for a long time.

Anyway, just putting this out there, because you feel so lost during the process of all of this. In comparison to other things, it feels so little and insignificant, but when you are going through it, it feels like it is the most pressing thing in the world. If this helps someone, great. If not, that's okay, too. :)

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