Saturday, July 30

Breast Cancer Gene

Would you get tested for it if you had a family history? After my lump scare, my doc suggested that I consider getting tested for it. I've been contemplating it but . . . I dunno.  All the men in my life -- NG, my boss, my brothers, etc. -- are quick to say I'm crazy if I don't.

But . . . the women I've talked with are about 50/50.  One friend (who also has a family history full of breast cancer) said she decide not to because she realized that if she came up positive, she was not willing to do any of the suggested mitigating treatments (basically taking Tamoxifen (sp?) or elective mastectomy) so . . . decided she'd rather not know. I fully get that and think it makes a lot of sense but . . . I dunno.


Jilly said...

men can get BC too. i have a friend whose grandfather has had BC for about 10 years, and it's looking like he's going to lose his fight with it, sadly.

i had every genetic test on the market when I was pregnant in 2006/7 b/c i'm missing half my family medical history. I wasn't too scared of the results, but i was curious. they told me i was clear and i didn't think of it again.

now that i'm going through all this new testing and medical bullshit, they want me to undergo even more genetic testing, but with my guy this time too. these tests aren't covered by insurance and if we don't get them, we have to sign several documents. i told my guy i don't want them. at some point, they're not going to be able to test for everything, and even if they can, if you or your child will get something is still a gamble. i told the genetic counselor that the results don't concern me as long as they don't say our child will have a deadly condition, otherwise, i'll just be happy to have a reasonably healthy/happy baby.

while we're going through all of this, one of my cousins is very pregnant. she had a sonogram recently to tell if the baby is a girl or boy. when the tech told them that they're having a girl, the baby's father got pissed and made some nasty comments and made my cousin cry. I was sad b/c after all the shit we've been though this year, just to get to the point of having a healthy baby who's made it to over half-way through the pregnancy is a dream for us and here's this douchebag pissed off b/c the baby won't have a Y chromosome.

in all the paperwork we've had to read recently about genetic testing, there was a lot about pre-determining physical features and gender and how that's not kosher in the US, but it's okay in other places. we're seeing a side of humanity that i'm not sure how to interpret.

if you don't want to know, then that's your right, and no one can make the choice for you. although, the males in your family ought to think about the test for themselves if they're that worried for you, it's a 2 way street.

vq said...

I've been struggling with this, Urbs. My sister was diagnosed with BC 7 years ago (and she is doing GREAT, btw), and my doctor said I should ask her to have the test. If she wasn't positive, there wasn't much reason for the rest of us to have it. But she doesn't want to (and she has 3 daughters!)

So then my doctor said that I could have it, in that case, but that the cost was around $2000. And like you, I"m not sure exactly what I'd do if I tested positive for the gene.

She said you also have to be careful that insurance companies don't get hold of the fact that you've had the test, or of your results. That's creepy.

I'm still mulling it over.

Jilly said...

I finished a book today about Henrietta Lacks, and near the end of the book, it explains WHY these tests are $2000+ dollars. I was so upset after I read that part, I had to get up and walk around for a bit.

The company that made the test patented the BC gene and own the test and all materials related to it. No other researcher, company, or scholarly institution is allowed to do anything with that BC gene or test w/o paying vast sums of monies to the patent holder. They charge $2,000 b/c they can. They figure that if they charge over $2,000 people won't get it, but @ $2,000 some people can still afford it.

The courts upheld case law that gives researchers right to patent genes and eliminate any and all genetic claim individuals hold on their tissues and genetic materials b/c attys for scientists argued that no medical progress would be achieved if doctors had to inform people why they were taking samples and that their tissues were in fact quite valuable.

Moreover, the argument was that paying someone for their tissues and said results of research would bring research to a stand-still. Research shows that most people have little interest in making money off their tissues, but they have issues with researchers using their bodies for medical advancement and then charging them thousands of dollars for treatments developed by using their own cells.

It's funny, but the same logic about preventing research used by researchers to gain ownership of any and all tissues removed from patients is being used by other researchers to bring research to a stand-still and hold the rest of us hostage.

Insurance companies don't cover these tests and most people cannot afford them. the genetic test that my doctor wants me to have is about $500. I consider $500 a lot of money. I round of IUI costs about $500 for me. If we test positive for the bad genes, when we get to IUI/IVF, the test to weed out the bad genes from the embryos is about $2500 a pop. If they do a round of IUI or IVF, and it fails and we have to do it again, that's another $2500 for another round of weeding out.

So, IUI is ~$500 (a round), IVF is ~$2500 (unlimited), the genetic testing is ~$500 and if we did the "weedig out", that's ~$2500 a pop. I have lovely insurance that covers many of the costs, so the prices I have quoted you are after my insurance pays for what it will.

Part of me can't help but see some of it all as a big old scam. I understand the need for medical research, but a lot this feels like price gouging and fear mongering at the risk of the rest of us.

VQ, they're not allowed to use any genetic testing results against you, thanks to a lovely new law. It always takes the government so long to change things.

I HIGHLY recommend "The Immortal Life of Henrietta Lacks" by Rececca Skloot. It's a great read, but it's also sad and full of hard to answer questions.

UrbanStarGazer said...


UrbanStarGazer said...

Thanks for all your info, you two. It was great info and helped me in thinking about all this. I still haven't decided but figure for now I'm just going to be diligent.

Thank you!