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The gene test for breast cancer. Would you have it?

(28 Posts)
Stars66 Sat 05-Jul-14 09:29:01

That's it really, would you have the test? I am being referred to a genealogist because of family history, and while I said yes straight away to that referral, I'm now wondering if I should have the test, like the one that Angelina Jolie had. What if it shows that I have the gene?

MrsMaturin Sat 05-Jul-14 09:33:32

I don't have a family history but yes I would - because I have daughters. I want to be around for them and their kids (which was also A Jolie's reason) AND I want to protect their health - because if I had the gene they might too. Breast cancer is treatable and there is also preventative (though radical) surgery. Screening of genes in those circumstances allows you to pro-actively protect your health.
If it was something else - something incurable, like Huntington's for example then I really don't know what I'd do.

Pompatrol Sat 05-Jul-14 09:37:51

I would, so that I could take preventative action if needs be.

lljkk Sat 05-Jul-14 09:40:00

Personally, from what I know today, I would get the test but I think I would act on it differently from some. In that I would delay radical mastectomy until older than all the cases I've heard about & concentrate on healthy lifestyle in meantime. The sci-lit I've seen suggests this is a reasonable strategy.

I know someone in her 50s with big history of ovarian cancer in family but she can't face testing. I would get tested for that, too. I would need to know.

Ledkr Sat 05-Jul-14 09:42:56

I have!
Had it a last year, positive sad not such a biggie for me as I'd already had breast cancer and a double mastectomy when I was 27 so I'd done that bit.
Had my ovaries out in January as I'm high risk of that too.
I'm fine. Sad that my dds will have to go through this crap though.

Tangoandcreditcards Sat 05-Jul-14 09:44:05

Yes. I did.

My mother died of BC at 48 (diagnosed at 38), my maternal aunt was also diagnosed at 38, my sister got BC at 29, so I had the test (I was 25). We knew mum and aunt had the gene (BRCA 2) because they were part of the trial that identified he gene in the 90s. I had a double mastectomy 5 years ago (at 29). I haven't regretted my decision to test or have surgery for a minute.

It's a lot more in the news now due to Angelina and also because you can now test just one person (they used to need 2 positive samples to test so you always needed something to compare it to).

Speak to the genetics person because they will be able to phrase the choices and consequences a lot more articulately (there's more than one gene, and the odds are different, they also increase your risk of ovarian cancer and others depending on which one)

If you want to chat more, happy to answer any questions on thread or PM.

Ledkr Sat 05-Jul-14 09:45:02

And op, I'm very happy to talk to you if you want.

TerribleMother Sat 05-Jul-14 09:46:58

Yes, I definitely would. I have stage 2B grade 3 invasive ductal and dcis breast cancer. If I could have done anything to preempt or prevent this then I would. Losing your breasts is, IMO the easiest part of having cancer at 35. I've advised my sister, and would advise daughters if I had any, to have the test.

douchbag Sat 05-Jul-14 10:37:50

I'm going through the same, my form has just been sent off. If needs be I will find out, not for me but my 3 dd's x

Stars66 Sat 05-Jul-14 13:03:15

Thank you previous posters, for sharing. How scary to find out that you hold the gene, but yes agree, being here for my dd, is definitely the most important thing.
My mum was diagnosed at 35, and died at 40, so I have always felt that I would live my life in full till then, but now I'm a mum, I want to be around a lot longer!!! Although I know that treatment has come on in leaps and bounds since my mum was sick.

I guess I will speak to the genealogist in depth and take it from there. But you've made me think a little more about the worth of testing, and the more I think, there is so much more to life.

MrsMaturin Sat 05-Jul-14 14:23:51

Good luck OP smile

Ledkr Sat 05-Jul-14 15:33:49

You'll be fine whatever. I'm 47 now and reconstruction has given me fab boobs!!

PJ67 Sat 05-Jul-14 23:46:53

I would have the the test if it was me as you at least have options if it's positive.

MegaClutterSlut Sun 06-Jul-14 09:21:34

I absolutely would get tested, especially as I have a daughter but not only that I would want to know

TheOldestCat Tue 08-Jul-14 00:27:58

Yes, I would. DH's sister had the BRCA2 gene (and BC way before the age of 50) so the reading I've done suggests he should be tested - for our DD if not for him. But he refuses to discuss it.

If it was me, I'd have the test. I'd like to have the information first and then think about acting on whatever it shows.

I wish you all the luck in the world, OP.

Stars66 Tue 08-Jul-14 13:54:46

Thank you x

tiredteddy Thu 10-Jul-14 20:11:20

Another one to add that yes, I've had the gene test. Found out I carry the brca1 gene. Have had prophylactic double mastecomy and reconstruction. Like ledkr now have fab boobs smile but seriously, it was scary finding out but knowledge is power. Knowing allows to you to have a choice not to let fate rule your life. My op was nearly three years ago and I'm just normal me. I've had a dd since and it makes me more sure I did the right thing. I'll be here for all my dc with no regrets and no if onlys. Feel free to ask any questions you think might help you.

Princesselsaanna Fri 11-Jul-14 18:14:05

I have done this due to a strong family history of BC. Luckily I am negative but I know without a shadow of doubt that I would have had a preventative mastectomy and oophrectomy. The possibility of breast cancer doesn't frighten me half as much as the possibility of ovarian cancer. Please make sure that people don't just consider the test a test for breast cancer, it's for ovarian cancer too which has really low survival rates. Having your ovaries removed also dramatically reduces the risk of breast cancer. Unfortunately I have met too many women who have had preventative mastectomies without being properly briefed that they are at high risk of ovarian cancer and have later gone on to develop ovarian cancer which in their cases, as they knew they were BRCA positive could have been entirely prevented.

tiredteddy Fri 11-Jul-14 19:05:25

Really good point Princess. I have that op in my future. They've advised me I'm too young to have my ovaries removed yet. But no other screening available. It's a big worry of mine.

loobylou67 Sat 12-Jul-14 22:47:50

Stars66 can I ask is it only your Mum that is your family history? IYSWIM as I have asked about testing, previously spoke to genetics people a little over 5 years ago and despite my Mum and cousin having BC diagnosis before they were 50 (47 & 46 respectively) and my maternal Aunt (cousins mum) at just over 50 I was told I didn't meet the criteria for testing.
I have however just a couple of weeks ago spoken to my GP who has said she will write to genetics again, there are no other female blood relatives in my family (other than much younger 4 & 8 nieces), so no one else is going to get BC which I understood would mean I would then meet criteria for testing.

loobylou67 Sat 12-Jul-14 22:49:17

Oh and like others have said the ovarian cancer element/risk is much more scary to me than the BC

Stars66 Sat 12-Jul-14 23:03:43

Loobylou, my mum was diagnosed at 35 and died at 40. There is also a family link to Russian Orthodox Jewish, who carry a dodgy gene. It was both of these factors that warrants the referral for the gene test. There is a lot of other cancers in my family, but the dr didn't think these were linked.

Princesselsaanna Sun 13-Jul-14 00:58:21

Anyone with any Ashkenazi (European) jewish ancestry on either maternal or paternal side is eligible for testing regardless of family history and that's because the risk of carrying the gene is much higher in these communities. Because most jewish people who have are positive have one of a v small number of mutations it means that it's possible to test without having any relatives. The gene is also carried paternally so worth men being tested too if they feel that they might be at risk.

Stars66 Sun 13-Jul-14 08:03:36

Princess - thank you for adding your knowledge, I wasn't sure why that history warranted a referral

loobylou67 Sun 13-Jul-14 22:29:32

Thank you for the information Stars and Princess
I'll see what the genetics people say next month

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