My Medical Choice

http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html

by tbassetto • 13 years ago

227 102 13 years ago

michh• 13 years ago

Preventive medicine like this saves lives and money. But try convincing the pencil pushers. Looks like in both privatized and nationalized healthcare, they are often only willing to pay when there's a disease to diagnose. Not when there's an 80% chance you'll get it later when it's much harder and expensive to cure. Unless you have Jolie money and can simply afford to pay for it yourself.

pixelcort• 13 years ago

Wouldn't the expected value of preventative care make it worth doing statistically?

    (cost of preventative care) < (cost of after-the-fact care) * 0.8

arnsholt• 13 years ago

Sure it would. But the down-stream savings of preventative medicine don't show up in a balance sheet. There all you can see is money spent on people who don't really need it right now (or some variation on that general theme). That's a big part of the problem.

rjtavares2• 13 years ago

In Portugal I believe the state pays for preventive mastectomy in these cases. Of course, a lot of people chose not do it anyway (which I understand).

The UK NHS also pays for it (http://www.nhs.uk/Conditions/Mastectomy/Pages/Why-is-it-nece...)

TazeTSchnitzel• 13 years ago

Nitpick: That's England's NHS, there is no UK-wide one. Although I think Wales, NI and Scotland's do similar things.

danso• 13 years ago

Even if it were true that this surgery were only available to someone as rich as Jolie, if it is also true that it ends up costing less than waiting for cancer to hit, then our public health care realizes the same cost savings whether the patient is Jolie or in the low-income bracket. Jolie making a public statement is very helpful in changing the public consciousness of this dilemma, hopefully in a way that favors preventive care -- for everyone

yummyfajitas• 13 years ago

Preventive medicine like this saves lives and money.

Sometimes it does, sometimes it doesn't. Lots of preventative medicine doesn't save either lives or money - mammograms below age 50 are a good example. The increased risk of infection from doing a biopsy on a non-cancerous mass (and similar complications) outweigh the rare early breast cancer cases prevented.

http://www.uspreventiveservicestaskforce.org/uspstf/uspsbrca...

http://www.bloomberg.com/news/2012-07-31/in-mammogram-debate...

I don't know the specific details of this case. Maybe she reduced her risk, or maybe she traded a 5/1000 risk of cancer for a 6/1000 risk of infection.

But this "preventative medicine saves lives and money" meme needs to die. Sometimes it's worthwhile, sometimes it's not. Numbers >> political memes.

kyro• 13 years ago

Needs to die? What are you talking about? Obviously administering tests that haven't been shown to be effective prophylactically and can even cause harm to a given population is a stupid idea. That's why we do research and weigh benefits/risks. That's like saying antibiotics need to die because many times they don't work and can cause resistant strains, when the problem is that physicians often administer them incorrectly.

Appropriate preventative medicine supported by research and numbers is so, so important.

bicknergseng• 13 years ago

>6/1000 risk of infection

I know this is probably statistically true at some level (when using real statistics), but I do wonder how the statistics move for wealthy individuals at places like Mayo vs the national average. I would imagine the rate of infections at world class hospitals is lower than at a clinic in Englewood, but I wonder if it's enough to swing the statistics in electoral surgery's favor.

famousactress• 13 years ago

You're pretty off-base. My mother has a group PPO here in the US that isn't anything special and just went through this procedure preventatively, after surviving ovarian cancer and finding that she was also at severe genetic risk for breast cancer. Her insurance covered all of the mastectomy and the reconstruction.

calinet62• 13 years ago

That's great news—it also means she has great insurance... not everyone can afford that.

gdonelli2• 13 years ago

At first I thought, this wasn't relevant to HN. But then I realized that A. Jolie is hacker. She is trying to hack her life.

pervycreeper• 13 years ago

>http://www.imdb.com/title/tt0113243/

gdonelli2• 13 years ago

1995!

Evgeny• 13 years ago

I am fortunate to have a partner, Brad Pitt

Took me a few seconds to process and understand who the author is.

jbrooksuk• 13 years ago

Funnily enough, when I started reading the first paragraph and thought "I wonder who the author is", then I scrolled up and read "Angelina Jolie" and thought "oh" not thinking anything of it.

It was until "Brad Pitt" that I realised, hah! Early morning.

rythie3• 13 years ago

I don't get why they don't make a bigger thing of who the author is on this one.

davidgerard• 13 years ago

Every link I've seen to this today that's not on HN has been all about who the author is.

kokey• 13 years ago

I quite like how they did that, it made the reading experience interesting.

meatsock2• 13 years ago

she's credited in the byline

scott_s• 13 years ago

Famous people frequently contribute columns to the NY Times. By not making a big deal about it, they elevate their status.

saevarom• 13 years ago

I had the exact same reaction

aetimmes• 13 years ago

At first I thought "oh, it's just another guy named Brad Pitt."

rdl2• 13 years ago

I assume a lot of women would want to wait until after they were done having children (particularly since ovaries would also be removed). It might be a harder choice between "mastectomy/oophorectomy and sterility" and "increased risk of cancer" for a 22 year old.

Also surprised the patents on BRCA didn't come up in this article, just the cost.

ssprang2• 13 years ago

On the other hand, given a genetic risk factor so potentially life threatening that it warrants having body parts preemptively removed, you might think twice before reproducing.

Osiris• 13 years ago

That would certainly be a great way to prevent genetic disorders for future generations, just disallow anyone with a pre-disposition from reproducing and/or being born.

That seems like an odd way to look at reproduction. Would you rather like 50 years and die of cancer or not have lived at all?

It's one thing to make a decision when there's medical evidence during the pregnancy that can be tested but when you're only talking about a statistical risk that something may or may not occur...

dannowatts• 13 years ago

i think it's brave and commendable of ms. jolie to open up about something so personal and difficult, using her fame and notoriety to help others who come into similar situations.

much respect sent her way.

spullara• 13 years ago

This is generally covered by insurance in the US, including the reconstructive surgery.

http://breastreconstructionnetwork.com/will-my-insurance-com...

hispanic• 13 years ago

Generally, maybe. My friend had this surgery recently and she had to fight (her insurance company) for it.

rms4• 13 years ago

Note that the BRCA test costs $3k when purchased through a physician, but 23andme violates the patents and tests for BRCA for $99. http://23andme.com

forrestthewoods• 13 years ago

Q: "Does the 23andMe service include analysis of the BRCA gene?" A: "... The BRCA mutations covered by this report are only three of hundreds in the BRCA1 and BRCA2 genes that can cause cancer."

https://customercare.23andme.com/entries/23241132-Does-the-2...

rms4• 13 years ago

But those are three of the most significant of the possible BRCA mutations, no?

gcb0• 13 years ago

after you have the dna mapped out, how can you patent looking for a pattern?

or is there a completely different way of mapping specific genes?

jurassic• 13 years ago

Have you done this? I'm interested in knowing my genetic risk factors, but I'm afraid of how I would handle it if there was something really bad and unexpected.

rms4• 13 years ago

Sure. Of the high penetrance mutations 23andme tests for, I don't have anything really bad. I think it's worth knowing for most people, because of minor things you can do to alter your risk. For example, people with the bad version of the high risk Alzheimer's gene (ApoE4) probably respond better to paleo-esque diets and intermittent fasting than the average person.

socialist_coder• 13 years ago

I have. I find that it's very valuable to know what you're at risk for so you can plan appropriately. Of course, I was not at-risk for anything serious so it was not hard for me to cope with the results. I can see how coping with very bad results could be extremely difficult though... it's a tough choice if you are a more emotional person.

I think that a lot of programmers are probably more cold and logical in their thinking (like me) so it was a pretty easy choice for me.

My wife is a lot more emotional and I have tried to convince her to get 23andMe but she refuses because she doesn't want to know.

berberous2• 13 years ago

I have done 23andMe and had my full genome sequenced. Unfortunately, we are still in the early stages of understanding our genome and there is often little of medical importance revealed.

The most significant of the "something really bad and unexpected" are the risk factors for Alzheimer's and Breast Cancer. I believe that there are certain markers for both those diseases which could reveal that you have a much higher lifetime risk (for some cases of breast cancer, >50%), which is obviously scary. Don't quote me on this, but I believe in both situations you are very likely to have had some family history in these diseases, so it should not be a total surprise. And if you have a family history of breast cancer, you should be getting Myriad's full BRCA test (see my other post). I would probably look into a clinical test for Alzheimers too if I thought I was at risk.

There are a few other diseases that also have big impact (>50% lifetime risk), but they are rarer, and I'm not sure if there are any where you would have had no family or personal history to clue you in on the possibility.

The vast majority of the diseases 23andMe reports on give you very little actionable data. For example, it might say I have a 2x risk of prostate cancer, from a background risk of 2% chance to a personalized 4% chance. I view that as pretty unhelpful. Furthermore, it's based on SNP-associations currently known. It's possible, I have another SNP that's associated with a .25x risk, and therefore I actually have only 1% chance overall, i.e. half the general population's risk.

23andMe can be useful for other reasons. For example, it will tell you if you are a recessive carrier of certain diseases, which is helpful if and when you decide to have children. It's also fun, has ancestry info, etc.

nigelsampson• 13 years ago

Interestingly I saw the news tonight here in New Zealand that BRCA test is paid for by the government if you have some risk factors for breast cancer (I believe they mentioned having two relatives affected by the disease).

lostlogin5• 13 years ago

The government also pays for screening imaging, MRI included (this is one of the rare situations where MRI is used as a screening tool). This is probably significantly more expensive than the gene test.

exit2• 13 years ago

is this on the front page of hn because jolie starred in hackers?

daliusd• 13 years ago

No.

http://ycombinator.com/newsguidelines.html

What to Submit On-Topic: Anything that good hackers would find interesting. That includes more than hacking and startups. If you had to reduce it to a sentence, the answer might be: anything that gratifies one's intellectual curiosity.

DanBC• 13 years ago

There's some interesting stuff about describing risk. Patients don't understand risk, but scarily doctors often don't either.

mysterywhiteboy• 13 years ago

It is on the front page because enough readers of hacker news considered it interesting and [hacker]newsworthy, and therefore up-voted it.

exit2• 13 years ago

yeah, and by extension i'm asking why enough readers of hn considered it interesting.

stevoski• 13 years ago

Do any of my fellow HN readers know enough to say that Angelina Jolie processed the available information of her extremely high risk of breast cancer correctly? Is the mathematics logical?

Something I wondered is, that given that 1 in 3 American women will have cancer sometime during their life, (and 1 in 5 will die from cancer), how much has she improved things by reducing from 87% to 5% the chance of having one specific cancer?

tinco• 13 years ago

Well, you can't really say anything about cancer without the "before the age of XX" part. Like, if she had an 87% chance of being diagnosed with breast cancer before the age of 57 like her mother, then she has improved her lifetime by a lot. (even if you take the 33% percent number, she went from 87% to ~33%, tell me that's not significant).

Also keep in mind that breast cancer is in a rather critical area, the slightest of spread affects the most vital of organs, this has a large effect on the survivability.

With the current speed of technology, I think anything that delays cancer is something that gives you an increased chance of surviving cancer.

300bps• 13 years ago

Wikipedia has a good summary of the risks:

http://en.wikipedia.org/wiki/BRCA_mutation

A 25-year-old woman with no mutation in her BRCA genes has an 84% probability to reach at least the age of 70.[16] Of those not surviving, 11% die from either breast or ovarian cancer, and 89% from other causes.

Compared to that, a woman with a high-risk BRCA1 mutation, if she had breast cancer screening but no prophylactic medical or surgical intervention, would have only 59% chance to reach age 70, twenty-five percentage points lower than normal. Of those women not surviving, 26% would die of breast cancer, 46% ovarian cancer, and 28% other causes.[16]

Women with high-risk BRCA2 mutations, with screening but with no prophylactic medical or surgical intervention, would have only 75% chance to reach age 70, nine percentage points lower than normal. Of those not surviving, 21% would die of breast cancer, 25% ovarian cancer and 54% other causes.[16] The likelihood of surviving to at least age 70 can be improved by several medical interventions, notably prophylactic mastectomy and oophorectomy.[16]

ttflee• 13 years ago

But, given that she is a Hollywood celebrity? Does the likelihood varies on this condition?

yason• 13 years ago

You can run but you can't hide. Body is a 100% accurate signal of your condition. She's messing with it to remove reception: it's like taping your car's warning light black so that you won't have any problems.

prodigal_erik• 13 years ago

More like replacing a frayed wire before it shorts out and sets the car on fire. Cancer is a cell going badly out of control, not a message from some malevolent deity.

tempestn• 13 years ago

What are you even talking about? If anything this is like performing expensive preventative maintenance on your car: the exact opposite of taping over the warning light.

outworlder• 13 years ago

Erm, no.

She can't have breast cancer if she doesn't have any breasts anymore!

What she is doing is prevention. Like fixing the engine before the warning light comes up.

bugschivers• 13 years ago

Actually, she can, breast cells are not limited to the breasts, neither are ovarian cells limited to the ovaries, hence the 5 - 10% remaining risk. Woman who have this procedure cannot expect to never have to check for ovarian or breast cancer again, it is not a 100% preventative.

jergosh3• 13 years ago

Her going public about this has got a great potential to raise awareness and make other women more likely to consider this course of action. The sad reality is, however, most women won't be able to afford the reconstructive surgery (or to have it done to the standard Angelina Jolie has).

irollboozers2• 13 years ago

I think more importantly it brings up the very real human implications of the debate against patenting human genes, which has most recently been centered around the BRCA gene.

http://www.npr.org/blogs/health/2013/04/15/177035299/supreme...

Swisscoder• 13 years ago

utterly pointless... By that logic some say we were born to the grave.

irollboozers2• 13 years ago

Elizabeth Iorns, the CEO of Science Exchange (YC S11), is currently conducting independent research to find a potential cure specifically for the BRCA mutation.

(https://www.microryza.com/projects/can-we-prevent-the-transm...)

Swizec• 13 years ago

I find it fascinating that just over a hundred years ago proactive teeth removal was a standard practice. Women would get all their teeth removed to save money for the prospective husband. And left untreated for too long, rotten teeth will definitely kill you through infection.

These days, women are getting proactive mastectomies, not so much because of the costs involved in treatment, but because cancer is a much scarier disease than teeth rot. At least to us. To us proactively removing your teeth is a bad joke.

In 100 to 150 years, will people think about a proactive mastectomy as a bad joke? I sure hope so.

lostlogin5• 13 years ago

My grandparents both had all their teeth out in their 20s as a proactive health move. This was in Edinburgh. They are in their 80s now, so I guess this was 60 years ago.

mcbain• 13 years ago

I was chatting to my mid-80's grandmother only recently when she casually mentioned that she had all her (still relatively healthy) teeth removed before her wedding, essentially as a benefit to her husband-to-be as the above post suggests.

My grandmother made it sound like it was a standard thing to do here in Australia in the 1930s/40s - whereas I'm still shaking my head.

rdl2• 13 years ago

Or maybe in 20 years we'll be used to removing parts and replacing them with vat-grown improved variations. I'd be totally down for getting a superhuman liver.

theorique3• 13 years ago

I think I could use a superhuman liver ... it would help with my drinking.

theorique3• 13 years ago

I find it fascinating that just over a hundred years ago proactive teeth removal was a standard practice.

What would people eat then? Smoothies, cream of wheat?

john_w_t_b• 13 years ago

They used false teeth.

gojomo• 13 years ago

I expect they used dentures, which have been made for hundreds of years out of a variety of materials, often by skilled goldsmiths/jewelers:

https://en.wikipedia.org/wiki/Dentures#History

klenwell• 13 years ago

She makes one point in her piece that struck me as novel:

"Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful."

Can proactive mastectomies double as cosmetic surgery? That would be an interesting wrinkle in the cost/benefit analysis.

I wonder if that also wasn't one of the reasons proactive teeth removal (replaced with dentures) was once so popular.

calinet62• 13 years ago

They can, and I guarantee you the insurance companies will look at it that way. Hers is leaving out a huge chunk of the story: money.

It will probably be called an "elective procedure" and especially if there is anything cosmetic about it.

My mom had a melanoma removed from her eyelid and the costs were staggering. She had some cosmetic reconstructive surgery done to allow her face to continue to look normal. That's all: normal.

They had to fight for weeks to get a good percentage of it covered—or any percentage of the cosmetic portion.

I don't know entirely what the case is for a preventative mastectomy, maybe if your cancer risk is high enough your insurance will see it as a overall benefit to them, but it can't be easy or cheap to deal with at all.

startupstella• 13 years ago

I think this is a great example of how a celebrity can use star power to impact the lives of other women. I only wish she had not done this in secret...if there are tabloid reports of pregnancy and weight loss, why not on such an important issue that can have an impact?

I also wish (for the first time ever) that she had introduced herself earlier in the article. Just like many readers, I didn't realize this was Angelina Jolie until very late in the article (which doesn't minimize her story, it just puts it in a different context).

palimpsests• 13 years ago

| I only wish she had not done this in secret.

Not done what? She published an account of her medical decisions in the NYT... hardly secret.

js2• 13 years ago

See also https://news.ycombinator.com/item?id=5607618 (discussion of "Our Feel-Good War on Breast Cancer"). That article does not address women with a BRCA mutation however.

Eva_Peron• 13 years ago

Best of luck to Crash Override. You're the best!!

mrexroad• 13 years ago

ahem, acid burn.

EvilLook• 13 years ago

And what do women without insurance, money, and BRCA mutations do?

davidrudder• 13 years ago

My mother lost both breasts, her gallbladder and her fallopian tubes to 4 separate cancers. When they discovered the BRCA gene mutations, she was tested and turned out positive. My sister tested positive and had proactive masectomies and hysterectomies. I was tested as well, but came up negative for the BRCA mutations (phew). I'm male, but if I was positive it would have meant changes for my daughter.

One advantage of the human genome project was that it lead to discoveries like the BRCA mutations. Now, the women in my life could decide ahead of time to prevent these cancers.

Mz2• 13 years ago

I have mixed feelings about seeing this. On the one hand, I do understand why she would make such a choice and I am cool with her using her fame to try to promote awareness and discussion. On the other, I am not happy with the way so much of modern medicine mutilates people instead of making them genuinely healthy and her example helps encourage people to feel that is okay.

juskrey• 13 years ago

Google: "Angelina Jolie complies diet, which combines a high percentage of carbohydrates and proteins with a low percentage of fat intake."

Meanwhile, in PubMed: "Women in the highest glucose quartile were 63% more likely to develop breast cancer."

lostlogin5• 13 years ago

The quality of the surgery is important too. If a plastic surgeon does it they tend to be less aggressive in scraping every last bit of tissue off before reconstruction. Breast surgeons tend to be more aggressive. Source: breast surgeon in the practice next door who I was discussing this with. Due to the source there may be a bit of profession bias.

Mz2• 13 years ago

I will add that breast cancer runs very heavily in my family. My sister has had two mastectomies and four occurrences of breast cancer. My mother has had two occurrences of breast cancer, one mastsctomy, one lumpectomy. I took care of my sister after her first mastectomy. I know how severely and permanently impaired my two workaholic relatives are. Angelina Jolie may be less impaired than my relatives because she might not have had lymph nodes removed. But this is major surgery and she is really downplaying that.

My sister likes to garden. She used to dig in the red Georgia clay with a pick axe. These days, she can't even vacuum. Her arms are prone to swelling. She does not have the strength she once had. Her life is far more limited than it once was. For years, my mother owned two pathetic, falling apart bras. Anything new with the eladtic still working made her arm numb and caused it to swell. She cannot tolerate anything snug, so she also wears a hugely oversized one piece bathing suit. They carry on and are not complainers. But the reality is they are both very seriously and permanently impaired.

Having seen what my relatives have been through, I understand why Angelina would make such a radical choice. I have done some rather extreme things as well for health reasons. But I am disturbed by the way this is being glossed over. I hope she remains satisfied with her choice. But with her fame and beauty and social influence, I think she is being negligent and irresponsible to make light of the consequences of this surgery. It may be a perfectly reasonable thing to do, but it is not without consequence.

My Medical Choice

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