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It seems to me that the decision to test women for breast cancer young is personal. I have always assumed I'd get it (but post-menopausal, which is not the BRCA genes) because my maternal grandmother, my maternal grandmother's only sister, both got it. Then my mother did.
Kids watching family members suffer from a disease are going to draw their own conclusions. And they might just win the lottery. Finding out they don't have the gene would be a big relief and finding out that they do, perhaps not such a big surprise.
How can experts know what an individual kid is thinking, fearing?
I'm going to answer a question with a question.
Is this somehow special because it involves the almighty breast? Does the conversation change if we're talking about a genetic marker for liver cancer or heart disease?
There's a trend among women who have the gene to get mastectomies. At this point, that's the only thing you can really "do" about it if you have the gene. If your 5-year-old kid has the gene, then what? Do you wait till she hits puberty, get the breast tissue scraped out, and get her implants? Keep swapping out implants as she grows up? What's the point of having this information when kids are too young to realistically do anything and/or make decisions about it?
Might as well wait till she's an adult, and then let her make up her own mind.
If this were a test for something like diabetes, then it would make sense to know sooner so that lifestyle changes could be made. But what productive action could be taken with this sort of information about breast cancer? As far as I can tell, none. And what harm could come of it? Clearly, at least some harm. Having that knowledge is a loosing proposition, and would be a pointless burden for a child to carry.
Any assurances from health insurance companies that they won't use results to withold future coverage?
That is, what protocols exist to address a finding at that age? And which healthcare company would pay for it?
For a few reasons, who wants to live with the stress of I got this gene, when oh when will I get cancer? I wouldn't want them to be tempted to remove thier breast tissue and get implants instead.
I think life is a crap shoot and even genetic testing is not a for sure guaruntee that you will develop cancer. I also would not want them to get a negative result and figure now they don't ever have to do a self breast exam, or get a mammogram when they reach their 40's.
It's like knowing the exact date and time of when you are going to die, if you find out you are going to die at 30, that can be a curse, but you make sure you live life to your fullest, if you find out you are going to die at 97, you might become more reckless and find out sure, you'll live to 97, in a wheelchair.
Trying to tell the future isn't exactly high on my list of priorities, know that you have a risk due to family history, take reasonable precautions, but don't spend your life worrying what disease you're most likely to get and when. No matter what, you aren't living forever.
Our environment and our food supply is overflowing with sources of plant and chemical estrogens.
You might be able to minimize your child's risk of breast cancer by understanding the extent to which her genes make her vulnerable to these outside triggers.
"...because it short-circuits their own later decision making, and because it could deeply freak them out."
Huh? First of all, this is information for the PARENTS, not the kid, which the parents can share or not as THEY, not the Doctor, think is wise and timely. We should deny people information because it might upset them? What the hell kind of patronizing, controlling, medieval thinking is that?
Yes there are preventative steps short of mastectomies, say much more frequent and regular checks, at an earlier age. Information for the Doctor once a preliminary diagnosis is made. Immediate access to any new treatments or preventative measures that appear. And great peace of mind for those that clear the test.
The down-side? Some people might be upset, better they should live in blissful risky ignorance, reliant on the whim of their doctor. Right.
As the parent with a child with a serious life-long medical condition, I have gotten full disclosure bad medical news repeatedly (and, thankfully, a good deal of less than worst-case scenario bad news too). I am always grateful, to at least know the score, potential outcomes, and what isn't known. It wasn't always easy, but I was grateful. And it immeasurable improved my (and my child's) relationship with the doctor, to be treated with respect and trust, on an equal footing.
I don't know where medical and scientific folk keep getting the idea that their expertise in particular technological technique makes them experts on psychology, ethics, and family dynamics. Or gives them the right to withhold desperately desired information. Arrogance, is what it is.
There isn't anything that can be done at a young age, this would probably cut funding for mamograms - which would affect those poor areas where the girls weren't tested to begin with, and would probably just create a field day for insurance premiums!
No testing until 18 - let them decide for themselves until we have a vaccine/cure/something that is FDA approved to stop breast cancer BEFORE it starts.
I just don't see the benefits to knowing at that young of an age!
One concern I would have is that this could be one of those "pre-existing conditions" that insurance companies like to use to exclude people from getting health insurance.
I would test my daughter if that was a concern. There are things you can do, like limiting food on plastic anything, taking a more proactive stance on her diet, really looking into all the body products we use that are stocked with estrogens, that would be a huge motivator. We already do that but I would probably make organic dairy a bigger priority (Sometimes it is just too damn expensive).
I wouldn't tell my daughter until she was mature enough to know, little kids shouldn't be concerned with that, but once she had a pair of breasts it would be time for her to know.
I too would be very wary of who would get this information and how they could use it against you.
If we had national healthcare this wouldn't be a problem......