Where better to start than with her own words? In the New York Times (D—though they are so far in cahoots with that party we could easily write ‘DD’) in a piece called “My Medical Choice“, after informing us that her mother died from cancer, she said:
[T]he truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.
If a woman has this variant of the BRCA gene, observations suggest she has a higher risk of breast or ovarian cancer than woman who do not. Jolie informs us that this risk is 65%. But then she tells us that her risk is 87%. Not 86% or 88%, but 87%, a number which is suspiciously precise.
Jolie’s medical history (“her reality”) is different than the “average” woman’s, and generally those with cancer in the family line also have higher risk. And she may possess other traits which led her doctor to tell her she had an “87% chance” of breast cancer. This number is scarcely believable in its precision and hints some mathematical model was employed. Stating numbers with unfounded exactness leads to over-confidence, and that makes for weaker decisions.
These numbers are also lifetime risk; that is, the chance of developing these cancers by the time a lady dies. They are not, for instance, the chance the woman will develop cancer (say) next year: that chance would be much lower.
Lifetime risks are very tricky to interpret (and vary by disease). The day-by-day, or year-by-year, risk is not constant, but increases through time, gradually at first and then more rapidly later. Think of the difference in risk (still assuming the female with this variant of the BRCA) between a 13-year-old and a 70-year-old; obviously, the latter has much higher risk. Jolie is 38, an age which is not considered to be especially dangerous (for “average” women).
Everybody dies. Therefore, Jolie will die of something. Might be cancer, might be a worn-out heart, or by apoplexy brought on by reading the NYT. Jolie will not now die from breast cancer (almost certainly), though she might exit via ovarian cancer—or maybe by some other cancer (colon, skin, pancreatic, etc.). Her liver might fail or she may stroke out. Anyway, she will die, though she may (only may) live longer and then dye from something else. All she has done, then, was to remove one of these many, many choices of death.
And then even if she developed breast cancer, it was not certain she would have died from it. Breast cancer is in many cases curable; sometimes by mastectomy. In other words, she could have sweat it out and then gone to the docs when and if she ever developed symptoms. She could have kept her attributes for a longer time, or even until death. But the cancer, assuming she got it, also could have killed her (instead of something else).
Point is: the decision to undergo this most painful and prolonged sequence of procedures is not as simple as noticing you have this variant of BRCA and traipsing down to the two-holed guillotine. The surgery itself has risks: doctors make mistakes, infections sneak in, though rarely. A young woman’s looks—a thing of utmost importance to women—have been forever lessened, though the replacement fakes are looking better all the time. Gone too is the possibility of breast feeding. This is not, and should not be, an easy choice.
It was an easy forecast to say that the legion of women who follow the lives of celebrities, after hearing the news yesterday, would mount their horses and ride immediately to their doctors and ask whether they should have their breasts removed, too. Jolie’s very public announcement was the hyper-equivalent of the pharmaceutical ad which ends “Ask your doctor is sassaffrassium is right for you.” It always is, particularly if the doctor does not enjoy being harangued.
The New York Post (R) reported:
City oncologists yesterday were flooded with calls about genetic screening and the kind of preventative double mastectomy Angelina Jolie revealed she underwent after testing positive for a gene mutation that indicates a likelihood of breast and ovarian cancer.
“This morning, I got two phone calls from women who had tested positive for the BRCA mutation in the past but had not decided to go forward with the surgery yet,” said Dr. Deborah Axelrod, 55, a top breast-cancer expert at NYU’s Langone Medical Center
“They said they wanted to now because they had read the Angelina Jolie article,” said Axelrod…
Ladies, before you head to the hospital, recall the existence of false positives. These are instances where a goof has been made or when a test is not precise. The screening for the BRCA1 variant is imperfect, and so too are screenings for breast cancer itself. You could be told you have the BRCA1 when you do not, and that you have breast cancer when you do not. See this Decision Calculator for more details. (Incidentally, only about 5-10% of breast cancers have this variant; slightly higher in women with ovarian cancer).
Too often, the possibility that “I might die from breast cancer” overwhelms all other knowledge, particularly is all that is talked about is the surgery and the good that can come from it. But there is a chance bad can come from surgery, most egregiously in cases where nothing was really wrong. And there is also good that can come from doing nothing save having frequent checkups. Do not rush to judgment.
We only hit the highlights here; many details were ignored because of space. For example, we didn’t get to cover Jolie’s “holistic doctors”, a term which is might be overheard on Duck Dynasty. More another time.
There is a very real risk that women will feel that since Jolie announced her decision, women will jump in and go with the preventative mastectomy. I’m sure she thinks she is doing women a favor letting them know what she chose (celebrities tend to believe their choices are the only correct one, of course) and empowering them to take action. The concern about women making bad choices based on this is valid, but the way to correct that is to educate women that celebrities are actually insecure little people who require large amounts of attention and accolades, and they are not role models.
I do understand why one would want to avoid developing what one’s mother or sister went through with breast cancer and some of the studies do show the gene is a high marker (so much for environmental factors). There’s still a 10% chance of getting the cancer anyway. Most interesting may be her choice to reduce the risk for breast cancer first, rather than the ovarian cancer her mother died of. It seems she is not ready to give up making babies yet.
I did a little research on this yesterday, and came up with this:
The odds are not 87%, they’re quite a bit lower, and they do not “cluster” in families: the fact that her mother had it doesn’t affect her risk, other than being predisposed to it because of the gene. Sadly, doctors are famously bad at statistics, and understanding statistics, and are very susceptible as a profession to bad statistics, in Disraeli’s formulation. Breast cancer risk is also correlated to other things, like your diet, and I doubt that any research has been done on the intersection between her genetic risk and environmental factors which might alter her genetic risk. So she might have adopted other strategies (I have) which could reduce her risk profile less catastrophically.
Breast and ovarian cancer incidence in BRCA1-mutation carriers.
“Jolie will not now die from breast cancer (almost certainly)…” her risk does not go to “nothing”, it’s still 2%… Although 90% is a big reduction in absolute risk.
Bilateral Prophylactic Mastectomy Reduces Breast Cancer Risk in BRCA1 and BRCA2 Mutation Carriers
Hopefully this will help her sleep at night, and hopefully the special effects folks will make her future movies as enjoyable as her past ones.
Oh, wait: I’m wrong. There has been research on BRCA1 and environmental factors: they can lower the risk, as this blogger explains:
Breast cancer BRCA1 and metabolic syndrome”
Briggs, perhaps you’d like to check out and comment on the online decision calculator here: http://brcatool.stanford.edu/.
Thank you for this important commentary. I have shared it on Facebook, so the young women on my friend list can see it. Some people become almost phobic about cancer (thanks in no small part to the advertising/fundraising campaigns). Smarter actions to help reduce the chance of breast cancer are to use non-hormonal forms of birth control, not have abortions, to breast-feed one’s babies, and to refuse hormone replacement therapy.
There’s a shortage of perfect breasts in this world.
She could still die of breast cancer, the op probably has not removed all breast tissue, the chances are of course lower.
Same if her ovaries go, similar cancers can still kill her.
The greater problem is that women WITHOUT the BRCA gene are getting double mastectomies – just in case. This has been discussed in the media already last year.
http://www.npr.org/blogs/health/2012/11/28/166064484/more-women-choose-double-mastectomy-but-study-says-many-dont-need-it
I read that in our country alone there are 50-100 women per year who have done exactly the same as Mrs.Jolie, because they have the same gen. I have not read any news about that.
The global attention this attention addictive person gets is repulsive. But what else can you expect from someone who thinks she is the centre of the earth? Perhaps only Bono can match this.
Breaking news–she is going for the ovaries next.
@Briggs:
“Anyway, she will die, though she may (only may) live longer and then dye from something else.”
Serendipitous typo.
GR,
Now how did that get in there!
The probability that you will die is 100%. If you reduce the probability that you will die from one thing it simply increases the probability that you will die from something else.
Probability of death remains 100% but this does not address time frame which could have been radically changed if there had been an operative complication such as death or post op complication as significant infection.
Her “87%” precision measure sounds suspiciously like weather reports that indicate the cloud ceiling is at “10,000 feet/3,048 meters.” I don’t know about the rest of the world, but the cloud level in America always seems to be measurable precisely to the meter. It could only be coincidence — couldn’t it? — that these measurements so often correspond to nice round numbers in the English system!
Anyway, I wonder if her doctor told her “about seven out of eight” and she decided to translate that into 87 percent. I think most doctors would use better judgment than to pin it down to the nearest percent.
There’s a 99% probability that you people are insensitive, boorish and downright crazy.
L O L !
Her life, her decision.
The question is where will this lead after a legion on “brave” women follow her lead… will the procedure be recommended to younger and younger women (mere girls? babies?) in the pursuit of perfect health?
Mr. Gilson – Yes. 87% is roughly 1 in 8, which might well be related to something genetic.
Of course her risk of dying of something, sometime, is 100%. However, it may well be that the event is likely to be considerably later (and possibly less unpleasant – cancer is a hard way to go) with the surgery than without. It’s also worth noting, perhaps, that most treatments for breast cancer (and other cancers, too) have highly unpleasant side effects, some of them permanent.
It reminds me of how much other “scientific knowledge”, mainstream consensus is derived from misapplied statistics. I’m thinking of the diet-heart lipid hypothesis (dietary fat and/or cholesterol increases blood cholesterol, which causes heart disease), which has been debunked in detail by authors such as Gary Taubes and Uffe Ravenskov, yet still is the basis for pervasive recommendations of low-fat diets and use of statin drugs. These authors and others review the past studies on which the theory is based, examining their data and showing how statistics was abused. The mainstream recommendations resulting from this bad science have done far more harm than a few celebrity endorsements.
Angelina Jolie had real high risk of developing brest cancer in a near future (10-20 years). So I think she took a good decision for her.
Of course, this kind of decision is a case by case and doctors are there to get the patient through it. You would also require a second opinion for a preventive surgery like this one.
Their is also the fact that she is able to aford the most expensive and highly regarded specialist in boht oncology and esthetic and unlike previous surgery she now has permanent reconstructed breast unlike the full removal that were available 20 years ago. Naked she probably look much of the same.
Speaking of “misapplied statistics,” our local newspaper wrote that in the no-fly period following 9/11, average temperatures changed by something like 2%. I wrote and asked whether that was 2% on the Celsius, Fahrenheit, or Kelvin scale.
Chances are the scientist who reported that research to the media said something that made sense. Chances are if that scientist saw that report, the scientist said, “Oh, well.” Or something else…
The technologies for genotyping/sequencing BRCA1 are fairly accurate and unlikely to produce false positives and the genetics of BRCA1 and BRCA2 has been studied extensively enough that there is not much question of its involvement in breast cancer. Calculating the actual ‘risk’ imposed by any genetic variant is the truly difficult part as in genetics, context is everything. Genes do not operate in isolation, so genetic modifiers and the complication of the gene X environment interaction of course is a factor. However, as I said earlier, the genotyping/sequencing technologies are not really prone to false positives. I have no doubt that she really does carry a risk variant.
Tuck said:
“The odds are not 87%, they’re quite a bit lower, and they do not “cluster†in families: the fact that her mother had it doesn’t affect her risk, other than being predisposed to it because of the gene.”
Actually it does make a difference that her mother had it. Most complex traits/diseases are affected by multiple genes and gene x gene interaction/epistasis. It is often the case that there are a handful of large effect genes that account for a significant portion of the genetic variance and many small effect genes that contribute to lesser extents. These small effect genes are much harder to identify by current techniques and study populations than the large effect genes like BRCA1 or BRCA2.
This is where family history is particularly valuable. It is entirely possible for risk variants in a large effect gene like BRCA1 can be inherited in a family with little incidence of Breast Cancer because there are other modifiers that reduce the risk, both genetic and environmental. In a family with a history of Breast Cancer, this suggests that there are other modifiers that can contribute to the risk associated with BRCA1 mutations. That her mother had Breast Cancer means it is much more likely that Angelina possess other modifiers that contribute to the disease.
The initial mutations to cancer cells are triggered by something. Something that likely goes “undetected” by the normal cell splitting (and subsequent apoptosis prior to further mytosis) mechanisms subsequent to mytosis.
In my tangential readings, I’d discovered that radiation hormesis is thought (and apparently demonstarted in a petri dish) to activate certain genes which enhance the “copy quality” of DNA during and subsequent to mytosis, reducing the rate of cell mutations. Moving to Switzerland may have been effective at delaying the onset of breast cancer until death by other means.