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.
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.
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.
It's all obviously dependent on your plan - but many plans do in fact cover 100% of a mastectomy and reconstruction. Which of course makes financial sense to them if the same plan requires them to cover substantial amounts of cancer treatment and the patient has such a high risk profile.
I'd need to find more sources but for one this is Aetna's policy, which it seems like Jolie would fit under due to family history and the results of her genetic testing.
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.
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.
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.
What is the nationality of your grandparents? Was this a Scottish/UK thing? While the practices seems crazy and very painful, I suspect that over a life time it is quite cost effective. I wonder if anyone with a dental background hangs around here who knows a bit about this arcane seeming practice
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.
Agreed. I can't imagine not checking the byline. It's even more valuable now than ever before because we can check the byline and Google the author if it's an unfamiliar name.
I'm sure there's something in that they are famous yes, people have some sort of empathy with celebrities because they feel they kind-of know them through films, books and press over the years. It's not quite the same when it's someone you don't know at all.
I'd expect it's less brave for someone from an industry and social circles comfortable with implants, injections scalpels, etc, and with a bit more than a "livelihood" to ease the experience. The experience would surely be more foreign to the average woman, requiring more bravery. Angelina isn't dependent on the look of her breasts for her "livelihood". 87% risk is a no brainer.
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.
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.
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.
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.
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.
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
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.
Well, yes, actually they do show up in a balance sheet - that's why it's a good thing if your balance sheet is an entire population without the difficult cases jettisoned.
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.
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."
Micro-array analysis (as opposed to the Exome sequencing they are starting to offer, which may be useful for BRCA diagnosis) focusses on frequently occurring single nucleotide polymorphisms (substitution of one base for another). The majority of these are benign.
By looking at lots of commonly occurring variants it is hoped that they can map regions of the genome that may harbour other mutations that may actually have an effect.
Baynes et al., 2007 [1] showed that none of the commonly occurring SNP's in BRCA (> 1-5% of the population) have a significant risk in cancer.
I stand corrected. It looks like 23andme is testing for just a few high-penetrance but uncommon mutations that are mostly only of interest to Ashkenazi Jews.
Myriad, the company that owns the BRCA patents, has been the only player in town for almost 20 years.
There is currently a case before the Supreme Court trying to invalidate Myriad's patents, as well as all patents on human DNA.
The issue, however, is that Myriad's value is no longer in their patents, but in the data they collected over the past 20 years.
Myriad charges ~$3k for their tests, while a full sequence of your entire genome is only ~$5k, and will tell you the same genetic data. But Myriad has been able to correlate much more of your DNA and the BRCA regions with cancer risk, and that data is not public.
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.
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.
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.
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.
This isn't uncommon. I do MRI scans on those genetically at risk of breast malignancy regularly and encounter this a fair bit. If the gene is found it radically alters things - number of children, their timing, mastectomy +/- oophorectomy, financial plans etc. It isn't for everyone.
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).
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.
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.
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.
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...
I was implying a personal decision to avoid becoming pregnant in the first place. I guess if you want to knowingly risk passing genes that cause terrible disease and suffering to all your descendants… yay freedom!? There are other options if having kids is important to you.
Elizabeth Iorns, the CEO of Science Exchange (YC S11), is currently conducting independent research to find a potential cure specifically for the BRCA mutation.
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.
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?
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]
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.
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).
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.
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.
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).
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.
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.
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.
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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.
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.
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.
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.
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.
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.