Two years ago, Angelina Jolie wrote in the NY Times1 about her choice to have a preventive double mastectomy. Today, she is back with an update on her choice to have another elective preventive surgery, the removal of her ovaries and fallopian tubes.
Two weeks ago I got a call from my doctor with blood-test results. “Your CA-125 is normal,” he said. I breathed a sigh of relief. That test measures the amount of the protein CA-125 in the blood, and is used to monitor ovarian cancer. I have it every year because of my family history.
But that wasn’t all. He went on. “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “CA-125 has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.
I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren.
I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.
This article by Anne Helen Petersen about how Angelina Jolie has expertly controlled her PR through several potential rough patches is way more interesting than it has any right to be.
This photo, for example, is a semiotic gold mine: Shiloh, often nicknamed “The Chosen One,” a glimmering beacon of whiteness, flanked by her racially marked siblings, one of whom seems to be protecting her from possible harm. All three are framed by their doting parents, tied to their children via skin color, head/neck scarf, hair highlighting, and physical touch. They’re a “Party of Five,” as the title of the accompanying article puts it, but they’re a distinctly global one: The photos were all shot in Cambodia, and when asked how her children manage all the traveling, Jolie says, “We’ve tried to make them very adaptable, so when we go to a country like India or certain parts of Namibia, they’re happy to play with sticks and rocks outside — they’re happy to blend.”
Taken together, these images, and the stories that accompanied them, were speaking about their relationship, even if the pair themselves weren’t offering comment. And what they were saying was that this wasn’t a story about sex or scandal; rather, it was one of family, humanitarianism, and global citizenship. Within this framework, any publication that chose to focus on sexual intrigue was effectively neglecting the most in need.
In a unanimous decision, the US Supreme Court ruled today that human genes cannot be patented.
The case involved Myriad Genetics Inc., which holds patents related to two genes, known as BRCA1 and BRCA2, that can indicate whether a woman has a heightened risk of developing breast cancer or ovarian cancer.
Justice Clarence Thomas, writing for the court, said the genes Myriad isolated are products of nature, which aren’t eligible for patents.
The high court’s ruling was a win for a coalition of cancer patients, medical groups and geneticists who filed a lawsuit in 2009 challenging Myriad’s patents. Thanks to those patents, the Salt Lake City company has been the exclusive U.S. commercial provider of genetic tests for breast cancer and ovarian cancer.
The challengers argued the patents have allowed Myriad to dictate the type and terms of genetic screening available for the diseases, while also dissuading research by other laboratories.
Fuck yes. A defect in her BRCA1 gene is what caused Angelina Jolie to recently have a preventive double mastectomy. (via @tylercowen)
Writer Tom Junod on journalism and regret:
I remember walking into a dinner party after Slate called the Angelina profile the Worst Celebrity Profile of All Time. My arrival was greeted with silence; people did not know what to say. So I brought it up, not just to ease the tension but also because I was, like my editor, perversely proud of being so honored, knowing that you can’t hope to write the Best Celebrity Profile of All Time unless you are absolutely prepared to write the Worst. I’m not in this business because I expect to be admired but rather because I want the freedom to say what I want to say and get some kind of reaction for saying it, so if I can’t enjoy the fact that Slate devoted 2,500 words to the Angelina profile then I’ve lost something of myself that I desperately need to preserve in order to write the way I want to write. The great vice of journalism in the age of social media is not its recklessness but rather its headlong rush for respectability — its self-conscious desire to please an audience of peers rather than an audience of reader — and the first step towards respectability is regret.
Here’s his profile of Jolie and the Slate takedown of it. And you can like this post riiiiight down here (God, please do):
In this morning’s NY Times, Angelina Jolie writes about her decision to have a preventive double mastectomy to hopefully ward off cancer.
My mother fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.
We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
It happens that just last night I read about the BRCA-1 gene in Siddhartha Mukhergee’s excellent biography of cancer, The Emperor of All Maladies. This part is right near the end of the book:
Like cancer prevention, cancer screening will also be reinvigorated by the molecular understanding of cancer. Indeed, it has already been. The discovery of the BRCA genes for breast cancer epitomizes the integration of cancer screening and cancer genetics. In the mid-1990s, building on the prior decade’s advances, researchers isolated two related genes, BRCA-1 and BRCA-2, that vastly increase the risk of developing breast cancer. A woman with an inherited mutation in BRCA-1 has a 50 to 80 percent chance of developing breast cancer in her lifetime (the gene also increases the risk for ovarian cancer), about three to five times the normal risk. Today, testing for this gene mutation has been integrated into prevention efforts. Women found positive for a mutation in the two genes are screened more intensively using more sensitive imaging techniques such as breast MRI. Women with BRCA mutations might choose to take the drug tamoxifen to prevent breast cancer, a strategy shown effective in clinical trials. Or, perhaps most radically, women with BRCA mutations might choose a prophylactic mastectomy of both breasts and ovaries before cancer develops, another strategy that dramatically decreases the chances of developing breast cancer.
Radical is an understatement…what a tough and brave decision to make. Again from the book, I liked this woman’s take on it:
An Israeli woman with a BRCA-1 mutation who chose this strategy after developing cancer in one breast told me that at least part of her choice was symbolic. “I am rejecting cancer from my body,” she said. “My breasts had become no more to me than a site for my cancer. They were of no more use to me. They harmed my body, my survival. I went to the surgeon and asked him to remove them.”
The genetic testing company 23andme screens for three common types of mutation in the BRCA1 or BRCA2 genes:
Five to 10 percent of breast cancers occur in women with a genetic predisposition for the disease, usually due to mutations in either the BRCA1 or BRCA2 genes. These mutations greatly increase not only the risk for breast cancer in women, but also the risk for ovarian cancer in women as well as prostate and breast cancer among men. Hundreds of cancer-associated BRCA1 and BRCA2 mutations have been documented, but three specific BRCA mutations are worthy of note because they are responsible for a substantial fraction of hereditary breast cancers and ovarian cancers among women with Ashkenazi Jewish ancestry. The three mutations have also been found in individuals not known to have Ashkenazi Jewish ancestry, but such cases are rare.
23andme testing kits are only $99.
Update: Two things. First, and I hope this isn’t actually necessary because you are all intelligent people who can read things and make up your own minds, but let me just state for the official record that you should never never never never NEVER take medical advice, inferred or otherwise, from celebrities or bloggers. Come on, seriously. If you’re concerned, go see a doctor.
Two: I have no idea what the $99 23andme test covers with regard to BRCA1 and BRCA2 gene mutations beyond what the company states. The most comprehensive test for BRCA1 and BRCA2 mutations was developed by a company called Myriad Genetics and costs about $3000. Myriad has patented the genes, a decision that has been sharply criticized and is currently being decided by the Supreme Court.
But many doctors, patients and scientists aren’t happy with the situation.
Some are offended by the very notion that a private company can own a patent based on a gene that was invented not by researchers in a lab but by Mother Nature. Every single cell in every single person has copies of the BRCA1 and BRCA2 genes.
Myriad officials say they deserves the patent because they invested a great deal of money to figure out the sequence and develop “synthetic molecules” based on that sequence that can be used to test the variants in a patient.
“We think it is right for a company to be able to own its discoveries, earn back its investment, and make a reasonable profit,” the company wrote on its blog.
I do know the 23andme test covers something related to the BRCA1 and BRCA2 mutations…a friend of a friend did the 23andme test, tested positive for the BRCA1 mutation, and decided to have a preventive double mastectomy after consulting her doctor and further tests. (thx, mark, allison, and ★spavis)