BRCA1 gene

for those you of that dont know the BRAC1 gene is linked to ovarian cancer and breast cancer. it is inherited and if your parent has it there is a 50% change that you will get

my family is currently being tested for the gene- my grandfather has it, my father died when i was 18months old so he cant be tested for it(and his twin brother doesnt want to be tested) so it means that i have a 25% chance of having it. i had my appointment today to talk about being tested, i have the forms but am still unsure if i want to be tested yet- it will be something i will do in the future but im unsure if im ready to do it now (im only 20)

the reason im posting this is because im interested in peoples experiences

Edited by H2289

I wouldn't do it either. Life is for living not wondering when you are going to get sick and die. You are so young and I would imagine don't want to live your life wondering when you will fall ill, plus I think thinking to much about these things is not good for your mind and you will not be very happy.

I think the only benefit from finding out would be that if it turned out you did have the gene, you could be more closely monitored (ovarian cancer has almost no symptoms until it is very advanced), and perhaps be given a choice to elect for a partial hysterectomy and/or mastectomy before the gene has a chance to do it's awful deed.

Even if you DO have the gene, that doesn't mean you would develop cancer.

My Mum died from a supposedly non-inherited form of ovarian cancer (although that was about 13 years ago, so who knows if BRAC1 was known of or tested for back then?), but if it was a hereditary form, I would want to know if I had the gene - not because it would make everything doom and gloom, but because it would help me form a plan of attack. If I had the BRAC1 gene and knew it, it might mean I choose to have (more) kids earlier rather than later (incase a hysterectomy/mastectomy became necessary). It certainly wouldn't put me off having children - we all have inherited genes for some kind of crappy disease, just most of us don't know what they are!

Hugs, because it is a very hard decision to make - I think you need to work through how finding out either way would make you feel/act, and if you are ok with living with the knowledge?

Not meaning to thread-jack, but what do you think my DH should do? His grandmother (and about 50 of her siblings) died from breast/ovairian cancer; his dad tested and is positive as is his uncle.... Which means that he has a 50% chance of having the gene to pass on to his kids....

if you have the gene you get "better" testing- the public hospital has to justify the costs of the tests. im unsure if you can get the same "better" tests done privately, i might have to look into this as the cost wont be a problem

also if i dont get tested it would be harder for my children to get tested- again it all comes back to the cost

Have you been in touch with the genetic counselling service? There are four in the country and they cover all the DHBs. Your GP can refer you (though from what you're saying, I wonder if you may have been in touch with them already?).   They are great for being able to talk through the "what would it mean" questions and to help in developing an plan of attack (to test or not to test) that you are comfortable with.

If it was the BRCA, I would get tested. I've watched my stepmother die of breast cancer and it wasn't good. Early mastectomy virtually (not 100%) eliminates your chance of breast cancer. Whether or not you wanted to go down that route would be a personal thing. Personally, I would. There was a really interesting article in Next recently about a woman with the gene. All her mammograms and ultrasounds were normal but when they analysed the tissue from the mastectomy, there was a small but fast growing cancer in there.

Opharectomy is a bit different (removal of ovaries). That feeds into early menopause, inability to have children etc. But like Blondy said, it might help you make decisions about when to have children (earlier rather than later).

On a broader note, I don't know what I would do if I had Huntingtons in the family - it's also autosomal dominant so 50% chance of getting it and I think it's one of the most evil diseases. If you have the gene, you will definitely get HD. I don't know if I would want to know that *I* had it but I think I would want to make sure I didn't pass it onto my children.

Now that they can do preimplantation screening of embryos, I can see how the technology could be useful. But yeah, don't know if I'd want to know about me.

I haven't read the responses but I'd get tested and then I'd start getting the tests done to pick those things up earlier. Like instead of waiting until the normal time to get a mamogram (however its spelt), I'd start getting them done earlier so I'd have a better chance if something did ever happen. I don't think its really any different from smears to be honest. I have abnormal smears so I have to have colpscopies all the time, its better that than having cervical cancer.

I would want to know as aliasmum says, forewarned is forearmed. Better to know what you have and deal with it, than all the 'what ifs'. Also with the rate that technology is moving you may have more options if you find out earlier.  Cancer is a biarch and if there was a way of knowing I was at risk and able to do something about it I most def would.

MrsH wrote: Many people don't want to acknowlege that bad things happen which is why loads of people don't have Life Insurance etc. .

I'd also get life insurance before taking the test.