When to test


I am still thinking about when to test. I had a conversation the other day with my mother. I told her that the chances of ever getting a response on the genetic discrimination question seem slim. But I also acknowledged that it seemed unlikely my fear of genetic discrimination on an immigration application would really be realized. She agreed and asked me why I am not getting tested right now then. I hemmed and hawed about it not being a good time. “But there is never a good time,” she said. She urged me to test as soon as possible and told me her regret at not doing it herself. It was sound advice. It was actually what I wanted to hear too. I wanted someone to try and push me a little.

But I haven’t made any phone calls since then. And I am still not planning to make any calls. Although I really understand what my mother is saying, I still feel this is not a good time. I feel too emotionally weak right now. Not necessarily because of what my mother is going through (if anything seeing her strength inspires me). I think it is mostly due to my current work situation. I am at the end of one job, trying to find another. And my job search is not going at all like I expected. It’s really trying on my self-esteem, in fact.

I feel strange to give this as my reason. Like it’s a petty excuse. Or maybe I just feel uncomfortable to acknowledge my weakness. My emotional health is one my weaknesses. I have gone through depression and anxiety issues in the past. I used to believe I was a sort of superhuman who could take on anything. But going through those times has made me realize that I am not superhuman. Sometimes I really have to cut myself some slack.

My worry is that finding out I have the mutation while I already having low self-esteem from this job hunt would be just too much for me to handle. So the alternative is to wait, until I feel like I am in better shape mentally to cope with the possible bad news. I don’t believe that there is much harm in waiting a little longer. If I was to test positive, I wouldn’t make any plans for surgery right away. I think—unless screening results suggest otherwise—that I would wait at least until I was 35 before I seriously consider any of the preventive surgeries. So I don’t think a few months will make much impact on my physical health, but it may make a big difference in my mental health.

As I was writing this blog post, I coincidently got a phone call from the screening clinic. It turns out they can get in my earlier than expected. I will have my first appointment next week. So I think this helps me rest easier. Not testing does not mean I am sticking my head in the sand. I can still be proactive. I admit, however, that I deliberately prolonging wishful thinking. Is this bad? I am actually somewhat curious what people who have been there think about this plan. Did you wait on testing? Did you wish you had? Did you wish you hadn’t?


5 Responses to “When to test”

  1. The moment I learned my father carried the BRCA2 mutation — and the moment I knew I had a fifty percent chance of inheriting it — I knew I needed to test. It still took me a few months to get up the nerve to call to speak with a genetic counselor, but I was thinking about testing constantly. It would have driven me nuts not knowing. Long story short, I’m also BRCA2+ and obviously went through with the PBM late last year. I didn’t realize how much my BRCA year (as I like to think of 2009) started with my Dad’s positive test until very recently. My husband and I went to go see one of our favorite bands, and the last time we’d seen them was on New Year’s Eve going into 2009. When we saw them then, just a week after my Dad’s positive results, BRCA was all I could think about (it probably didn’t help that it was NYE and we were looking ahead towards a new — and possibly shitty — year). I had forgotten about all of that until we went see them again this month. During their first set, I found myself thinking about BRCA more than I had in a long time; it was like I was having residual pangs of anxiety about it all (when, in truth, I don’t have much to worry about any more — except my ovaries, which I’m not going to start driving myself crazy over yet). I realized I was sort of having a flashback to how awful I felt, how burdened I was by the news of my Dad’s positive test and the journey into the unknown I faced; the difference was, this time, I could shake it off. Have of my happiness that night was from the music; the other half came from the great distance I’d traveled to be free from all that worry.

    Ok. Just realized I rambled a lot there. Please forgive.

    • I don’t think it was rambling, actually. I like hearing the description of your feelings. I also see your point that there is also some peace of mind that comes with testing. You know where you stand and you have done your best to counteract the risks of the mutation. And that makes the news easier to handle than living in the uncertainty and fear of “what ifs.” Thanks for sharing your story.

  2. While I agree that there’s no right time to test, I also totally see your point about your emotional wellbeing. That’s something I’ve always struggled with as well, and 2009 was a TERRIBLE year for me emotionally. When I came out of that, I remember thinking that perhaps now would be a good time to do the BRCA test – I felt stable and mentally strong and like I could handle it. I’d spent the past four years knowing I’d test positive, but had decided to put it off until I was about 25 (because I’d been told they won’t do any surveillance before 25, anyway).

    And I won’t lie – getting positive results was HARD. I’d expected I’d just shrug it off, because I’d “known” for years that I’d be positive. But it was emotionally very, very difficult, and still is (it’s only been about two months since I got my results). I wasn’t prepared for the emotional loop it would throw me for, but I also hadn’t read blogs or connected with any other BRCA+ people (other than my mom, but she got her positive results because she already had cancer, so it wasn’t quite the same thing). It sounds like you know it can be hard emotionally & are prepared for that. But I’m glad I felt emotionally/mentally healthy BEFORE testing, because if I hadn’t… positive results would’ve been a lot harder to take.

    Also, to add to my extremely long, rambling comment – you mentioned waiting until 35 for any surgery. I don’t know how old you are, but I’m almost 25 and, before testing, kept saying I’d wait until at least 30. Once I had actual, tangible results, I was like, “No, there’s NO WAY I can wait five more years and go through MRIs and mammograms and false positives for FIVE YEARS.” It really instilled a sense of urgency – and I’m not sure that’s really a good thing. Personally, I wish I’d done more research beforehand – I knew what a positive result meant, I knew all the options, I knew the choices I’d make, but I didn’t know how it would make me feel. And I wish I’d thought more about that, talked to people, etc., and I think I wish I had waited a few more years. Not because “ignorance is bliss,” necessarily… but because now it’s hanging over my head. Now waiting for surgery feels like playing with fire, even though realistically I know I probably could wait until even 35 or so.

    • I really relate to your feelings. I find it ironic that your “magic number” is also five years away. I’m 29 right now, and so I look towards 35. I’m also just starting to think about the “feeling” part of all this. Late last year I was researching BRCA like crazy, documenting every single case I could find with my mutation (not a lot actually). It was all a numbers game then. Now I am realizing that this is also a mind game.

  3. 5 Janine

    I wasn’t in the same shoes as you because I didn’t learn about brca until my cancer diagnosis so the decision to test was pretty easy. I assumed I was positive and I was. I guess I would ask myself, if I were in your shoes, if I were to wait and test and it turns out negative, did I wish I had tested earlier and not spent all that time stressing about it? If you were to test now and if it is positive, are things really going to be that much different then not knowing?
    Good luck with the job hunt, I certainly know how that feels.

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