I did not get the Angelina Jolie gene! Woo hoo!

April 18, 2015 5:13 PM

Three of my cousins have tested positive for BRCA1 gene mutation, all in the last year. After a 3-month wait, I finally got the good news from the lab - I am negative! I need to tell my cousins... but how? I am elated but the last thing I want to do is add to their pain with my ill-timed, poorly delivered giddiness.

My cousins' status:

1) ovarian cancer, was given 2-5 years
2) completed preventative mastectomy, awaiting ovary removal
3) opted against mastectomy, awaiting ovary removal

The whole situation is well past my level of emotional literacy so I am at a loss for words. Both general advice and specific scripts are much appreciated.

posted by anonymous to Health & Fitness (16 answers total)

Is it strictly necessary to share the news? Or even if you do sometime share it, is there any reason you need to do it now? In this case I'd celebrate privately with my immediate family/partner and concentrate on being supportive of the others and what they are going through. If it came up somehow, I'd acknowledge it as a blessing, but return the focus to how you can help them (not that you feel bad for them, or that their struggle makes your good news all the more meaningful to you - not that you'd say it that badly, but it's like telling a parent who lost a child that you're hugging your own children more tightly tonight. Focus on what you can do to support them).
posted by handful of rain at 5:18 PM on April 18, 2015 [24 favorites]

Are they pestering you for the rest results? If not, don't mention it. If they do ask, a simple "it came back negative, thank goodness" is all you need. No giddiness.
posted by Johnny Wallflower at 5:21 PM on April 18, 2015 [14 favorites]

I don't think anything good can come out of telling them. I understand you feel giddy and relieved, but find other ways to get that out of your system while keeping this news to yourself.
posted by bleep at 5:35 PM on April 18, 2015 [3 favorites]

Ask yourself this: exactly what is it that you want to accomplish by telling them the news?
posted by un petit cadeau at 5:36 PM on April 18, 2015 [3 favorites]

How close are you to the cousins? If you are friends with them they might be relieved to know your news. In that case just an informational, "I got tested and the results were negative," is fine.
posted by fluffy battle kitten at 5:39 PM on April 18, 2015 [3 favorites]

I assume they know that you're waiting for your results and they will at some point ask you, which is what you're trying to prepare for. As to how to do that, I'm afraid my best guess would be to minimize the whole thing as much as possible without dismissing it as unimportant, as Johnny Wallflower suggested; don't show them survivor's guilt or anything, even if you feel it during the conversation, because one way or another their emotional state is the priority here, and you can deal with your elation and sadness and other complicated emotions through the rest of your support network. It sounds like you care a lot about handling this with grace and kindness, so honestly you're starting from the right place.
posted by you're a kitty! at 5:41 PM on April 18, 2015 [3 favorites]

Agreed that you need not say anything unless specifically asked. If they do ask you directly, I would just share the news briefly (and definitely leave out any giddiness!!). This isn't something like a pregnancy where you cannot avoid knowledge getting out to your infertile friend. When asked, I would phrase it as "Yes, I did get tested and the test came back negative." There is no need to add commentary like "and I'm so relieved and happy and lucky and blessed!" Obviously you feel those things and you can and should share them with your partner, friends, and parents. No need to rub it in with people who are actively undergoing cancer treatment and surgeries!
posted by rainbowbrite at 5:44 PM on April 18, 2015

Agree, don't tell them unless they ask.
posted by Huck500 at 5:56 PM on April 18, 2015 [1 favorite]

I have a (frequently) deadly genetic condition as does one of my sisters. Our other sister doesn't have it. We pestered her to find out what her results were and were delighted when she tested negative. She would never have gloated but promised eternal support and compassion for us and our own families when she told us. I appreciated that response.
posted by taff at 6:14 PM on April 18, 2015 [6 favorites]

If they are waiting to hear back from you, I think the appropriate sentiment is, "Obviously this is a serious mixed-feelings situation, but I tested negative."
posted by Lyn Never at 6:29 PM on April 18, 2015 [3 favorites]

I should add that years on as she's processed it and my other sister and I have had lots of surgeries, emergencies , treatments, drugs and our own mother's death...our genetically unaffected sister has had complex feelings of guilt, and lack of connection from time to time. This may happen to you, so be aware of it. We are so pleased for her but sometimes I think part of her wishes she had it to bond is all together. If it helps you some time in your future, I'll tell you that this gene has done anything but bond my family together. So never slip in to thinking that in an irrational moment.
posted by taff at 6:30 PM on April 18, 2015 [3 favorites]

I would probably let them know if it came up in conversation, like if they asked you have you been tested or if it came up somehow. I probably wouldn't just volunteer it or bring it up directly because it could easily seem problematic.

I wasn't tested for BRCA1 until I actually got cancer, but based on my mom's and grandmother's history I was pretty sure I had it. I haven't urged other people in my family to get tested, but it's also likely that my mom's two sisters don't have the gene.
posted by kendrak at 6:30 PM on April 18, 2015

My mother and sister were positive for a BRCA1 mutation, and bugged me for years to get the test. When I finally did, and was negative, my sister was elated. Because of course she was. I think you are not giving your cousins enough credit if you think they would be anything but overjoyed that you dodged that bullet.
posted by pH Indicating Socks at 6:37 PM on April 18, 2015 [6 favorites]

That's great for you. You're very fortunate.

If your cousins ask or anyone in your family asks, say you are negative and leave it at that.
posted by charlielxxv at 2:46 PM on April 19, 2015

There's a really interesting This American Life segment on this topic, which you can listen to online. The short version is that a group of siblings and cousins were all being tested for Huntington's Disease and it covers the ethics and emotions around sharing the results with one another. It may help you tease out your feelings, and feel mor confident about whether to or how to share the news with your relatives.
posted by cior at 10:45 AM on April 20, 2015

All's I can tell you is, when I found out I'd tested positive for a super shitty cancer gene, finding out the rest of my family didn't have it brought me comfort. I can't think of a circumstance where I'd resent them for testing negative.
posted by Ursula Hitler at 7:09 PM on April 20, 2015