Angelina Jolie's masectomy op-ed NYT article

[Geila]

Has anyone read Angelina Jolie's article? I think it is so wonderful that she wrote this so publicly and honestly. Especially because she has such a strong sex-symbol status and I imagine that many women would fear losing their femininity or sexuality as a result of a masectomy. I've always admired her as an actress for the strong roles that she chooses and for her humanitarian work.

The whole article is excellent and I love this quote:

"Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of." Angelina Jolie

Here is the article:
http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0

[redfox]

Yes! I have a good friend who is facing this. Jolie's bravery is admirable.

[Gardenarian]

I read the article. I think this will reach a lot of people, who would otherwise not be open to talking about the subject.
It was also an great opening to a discussion with my daughter about sex symbols, breasts, and cancer.
I applaud Ms. Jolie's decision to publicize her experience.

[ApatheticNoMore]

But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

Not everyone is going to opt for elective surgery though (and how many people's insurance will cover a surgery that is purely preventive for a cancer you don't have yet - well haha at least we aren't yet to the point where insurances are forcing this elective surgery on people with "bad genes").

Otherwise get gene tested for everything under the sun if you wish, but ... be aware there exist only weak protections for privacy and for the gene testing being used against you in the future (ie having to pay more for insurance because you have "bad genes" etc. - even job discrimination based on them may be possible in the future etc.). Yes, yes, your genes should be read Miranda :laff: But it's true, we don't have robust protections on how your genetic data can be used. So have fun.

[Geila]

Not everyone is going to opt for elective surgery though (and how many people's insurance will cover a surgery that is purely preventive for a cancer you don't have yet - well haha at least we aren't yet to the point where insurances are forcing this elective surgery on people with "bad genes").

Otherwise get gene tested for everything under the sun if you wish, but ... be aware there exist only weak protections for privacy and for the gene testing being used against you in the future (ie having to pay more for insurance because you have "bad genes" etc. - even job discrimination based on them may be possible in the future etc.). Yes, yes, your genes should be read Miranda :laff: But it's true, we don't have robust protections on how your genetic data can be used. So have fun.

Well, I don't think any woman who is worried about breast cancer is going to "have fun" with this testing. This is a serious issue and I think it deserves to be treated as such.

And while you may be right that getting tested could pose future risks with insurance coverage, so could getting treatment for depression, anxiety, diabetes, etc.... but most people would still choose treatment.

I guess I'm bothered by the tone of your post because I think this issue is so sensitive for women and I don't see the benefit of making light of it or being sarcastic about it.

[ApatheticNoMore]

I see urging everyone to get genetically tested without legal genetic safeguards to be not entirely responsible. Of course in this case it's possible you may be legally protected, not because your privacy is legally protected, but because the genes themselves are patented - a lawyer on this subject would have to weigh in on that one as I surely don't know. I do know that it doesn't seem we are entirely protected legally from the negative consequences that could flow from genetic testing. And it's far from just breast cancer genes you can be tested for, genes for susceptibility to Alzheimers, there's a test for that, etc.. For a vast vast range of disease some degree of genetic susceptibility could be tested. So if widespread genetic testing is being pushed, there's a catch, if we don't have adequate privacy protection.


And while you may be right that getting tested could pose future risks with insurance coverage, so could getting treatment for depression, anxiety, diabetes, etc.... but most people would still choose treatment.

I think the risks are pretty high stakes, not being able to afford insurance for instance because one has a breast cancer gene, maybe especially if they choose not to undergo preventive masectomy etc., and then getting sick with breast cancer or even with anything else, and then bankruptcy?

[bae]

ANM - might want to take a look at HIPPA....

If I go and get a test done, I don't see how some random person is going to legally get their hands on it without my express permission.

[redfox]

ANM - might want to take a look at HIPPA....

If I go and get a test done, I don't see how some random person is going to legally get their hands on it without my express permission.

My thoughts too. And, having been immersed in cancer world for the last 2 months, nothing would have prevented me from getting treatment. Most everything else pales when one gets that diagnosis.

[Alan]

ANM - might want to take a look at HIPPA....

If I go and get a test done, I don't see how some random person is going to legally get their hands on it without my express permission.
Electronic Medical Records systems, which I believe are required under the Affordable Care Act, will be a huge problem.

Per Wikipedia (http://en.wikipedia.org/wiki/Electronic_health_record#Privacy_and_confidentiali ty):


In the United States in 2011 there were 380 major data breaches involving 500 or more patients' records listed on the website kept by the United States Department of Health and Human Services (http://en.wikipedia.org/wiki/United_States_Department_of_Health_and_Human_Servi ces) (HHS) Office for Civil Rights. So far, from the first wall postings in September 2009 through the latest on December 8, 2012, there have been 18,059,831 "individuals affected," and even that massive number is an undercount of the breach problem. The civil rights office has not released the records of tens of thousands of breaches it has received under a federal reporting mandate on breaches affecting fewer than 500 patients per incident.

[bae]

Alan, thus my use of the word "legally".

[Alan]

Sorry bae, I missed that qualifier. According to the HHS (http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html), we'll only have to concern ourselves, legally, with the following entities which may have direct impact on our lives:


Examples of organizations that do not have to follow the Privacy and Security Rules include:


life insurers,
employers,
workers compensation carriers,
many schools and school districts,
many state agencies like child protective service agencies,
many law enforcement agencies,
many municipal offices.

[bae]

Indeed. So you'd have to arrange for a non-covered entity to do your testing and keep your records to lose control of your data.

If you stick to your doctor, seems to me you are covered. So doing a genetic analysis to see if you are at-risk for breast cancer, through your normal medical providers, would seem reasonably secure...

At least, that's how they explained the confidentiality requirements to us at the fire department, because we have to sign forms in blood saying we understand our HIPPA duties, and have to report any breaches, and are personally on the hook for screwups.

[ApatheticNoMore]

Something like this:
https://www.23andme.com/

Wonder what your legal rights would be there. Of course they claim to do some breast cancer genetic testing, but I doubt it's the 3k patented BRIC test (because what they are offering is $99 afterall)

I figure pretty much noone is going to actually do the 3k test unless they can prove to their insurer they have a family history and therefore can get the insurance to cover. Because 3k out of pocket, just in case ... And frankly, even proving to an insurer is a very high burden, as I don't even fully know my family history and doubt I ever will (so many secrets or unknown), so it's the usual great unknown big black hole :) All I can say is as far as I know there is no history, among the people who were alive when I was, but what I don't know is pretty much everything before then.

[bae]

Something like this:
https://www.23andme.com/

Wonder what your legal rights would be there.

I suppose you could look at their privacy policy, and your contract with them, if you freely choose to hire their service.

[lhamo]

Aren't concerns about pre-existing conditions going to be pretty much moot after health care reform goes into effect next year? NO one is goign to be able to deny you coverage due to your genetics anymore.

I think what she did -- both the decision to have surgery and the decision to go public about it -- is awesome.

lhamo

[Tammy]

I'm part of 23andme. I love research, and get to be part of it this way, as well as learn more about myself.

[ApatheticNoMore]

So who actually plans to get tested due to this and how do you plan to pay for it? I think I maybe should get tested (cause of ancestry based risks - I might be at increased risk - not because of easily traced family history of the disease. But the whole thing is the family history *isn't* easily traced! Overwhelmingly males in that family, ancestry can't be traced very far up the family tree (can't be traced further than my grandparents), little contact with most distant family members etc. So the only thing I know about is the lives and deaths of a mere two females in that family, one never got any type of cancer beyond skin cancer from chronic sunbathing and died at the ripe old age of 95 (yea I want *those* genes), the other based on 3rd hand rumors seems to have had breast cancer post-menopause but probably died later of heart problems). Oh and if you try to talk to more distant relatives about the family tree you seem to hit a hard wall of secrets and "do not go there" signs (not having anything to do with cancer specifically though)

The 23andme stuff, yea it's not a 3k breast cancer test, but I toy around with it, mostly for the ancestry and curiosity stuff - need to test for neanderthal genes afterall :) And it's only $99 :) But I'm weary of the data getting out and used against me. The only diseases I do know run in my family are those of true old age, and I'll worry about them ... when I turn 80 or something :~) I probably have pretty good longevity genes in general, the breast cancer thing though, I don't know about that ...

[ApatheticNoMore]

Interesting it seems while a positive result will tell you yes you have those genes, a negative result provides no useful information if you don't have data on other family members having the gene:

"In cases in which a family has a history of breast and/or ovarian cancer and no known mutation in BRCA1 or BRCA2 has been previously identified [in a family member], a negative test result is not informative. It is not possible to tell whether an individual has a harmful BRCA1 or BRCA2 mutation that was not detected by testing (a “false negative”) or whether the result is a true negative."
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

It is interesting about Jolie, one of her points is probably just to inspire other women who know they have the gene (probably got tested because they know they have the family history) to dare to go through with surgery, that they might not otherwise. All hard to argue with (although I kind of distrust all surgerys, they carry their own risks), definitely inspiring, since it can't be an easy thing to do in those cases, to know you have the genes and submit to elective surgery.

If her point is really to inspire mass testing for the gene though, that's actually a social decision, for most poeple it's not an individual decision. If insurance doesn't pay for mass testing of the gene, it's not going to happen (and this is people who have insurance - not the uninsured or anything). In the exact same way that say if socialized medicine wasn't paying for it it wouldn't happen in a country that had that system. No real point there (I'm actually making much less of a poltical point than you think I am :)), except that in both cases it ultimately *is* a social decision. Yes in some cases some individuals will pay for it out of pocket - why do I have bad visions of it as some new yuppie saving goal - like saving for the kids college fund or something. But truly mass testing isn't going to happen without mass coverage for the testing, which I'm not even arguing for really, since that could get expensive pretty fast. It's mostly won't happen without coverage due to costs, but also just as teachers these days "teach to the test", doctors these days "doctor to the insurance", and are therefore unlikely to recommend tests than the insurance won't cover period. As for me, I'd really have to think it over, talk with medical people whose bias is of course to "doctor to the insurance" etc..

[lhamo]

I don't see any need to test for BRCA1 or 2 because we don't have major history of breast or ovarian cancer in either my maternal or paternal families. If the cost of the test comes down significantly maybe I would do it some day, but the cost/benefit analysis doesn't indicate it for me personally.

I am very interested in doing 23andme at some point as a family project. My husband is Mongol and I'm interested to see how far back we need to go before we share ancestors :) I also have what in French is known as "Neanderthal Toe" (Morton's Toe in English, where your second and third toes stick out longer than your big toe) so it would be interesting to know how much Neanderthal there is in me, actually.

[ApatheticNoMore]

So the BRCA-1 and BRCA-2 genes, that doom you to cancer right, except that periodically someone will throw out something like that incidents of cancer even with these genes are increasing. Say what? Any truth in that?

Like all such stories in which some well buried lead is that people used to be healthier (no, not in the paleolithic (!), I mean 100 years of so ago), wait, any truth to that or is it just some myth about the "good old days" (when of course many died of infectious disease).

"There is indeed a cancer epidemic in the Western world. It can even be dated, quite precisely to World War II. A major study published in Science has shown, for example, that for women carrying high-risk genes (BRCA-1 or BRCA-2), the risk of developing breast cancer before age fifty has virtually tripled for women born after the war, compared to those born before the war".
-from a book I'm reading Anticancer David Servan-Schreiber

He jokes perhaps these much-feared genes are not, in the end, "cancer genes" at all, but rather "fast food intolerant genes" - yea or post WWII industrial civilization intolerant genes I suppose! But he does cite a study on diet and 73% reduction in cancer in those with these genes.

I though I'd only read about the toxic environment in articles on Angelina Jolie's "priviledge", well she is rich as goddess, but being in her shoes making those decisions priviledge is not the word I'd pick. And I'm not sure I'd pick her choices either (removing healthy - not yet actually cancerous tissues and organs - yea I believe in preemptive surgery about as much as I believe in preemptive war), and I'm not sure it is better to be rich enough to know if you carry certain genes though I'm on the fence on that. Certainly no unequivocable benefit this modern technology that just tells us we are doomed in a world where shhhh don't tell anyone, but people may actually be getting sicker.

P.S. interesting book (Anticancer), probably overly optimistic but worth reading if you want to read about well ... cancer and things that might possibly help with prevention.

[sweetana3]

If my mother and my sisters or her sisters got breast or ovarian cancer AND the test showed the gene, I would be asking for the preemptive surgery. If your doctor tells you that you have an over 80% chance of getting the cancer and there is a way to prevent it, why would you wait unless you could not afford it?

This is one gamble I would not take. It is a very personal decision.