Angelina Jolie has had preventive double mastectomy

[EnterpriseSovereign]

Actor reveals she has had mastectomy because of gene defect that increases risk of developing cancer that killed her mother



Angelina Jolie has revealed she has had a preventive double mastectomy to reduce her risk of developing breast cancer, and has gone public with the news to raise awareness.


The actor has a defective gene, BRCA1, which significantly increases her risk of developing breast cancer and ovarian cancer, she writes in the New York Times. The latter disease killed her mother at the age of 56.


Jolie says she chose not to keep the decision private in the hope that other women would get gene-tested. "Once I knew that this was my reality, I decided to be proactive and to minimise the risk," she says.


Women with a defect in BRCA1 have on average a 65% risk of developing breast cancer. Jolie says her doctors told her that her risk was 87% and that surgery had reduced it to 5%. The defect also increases the risk of ovarian cancer, which Jolie says doctors estimate is 50% for her.


The 37-year-old, who has six children – three by Brad Pitt and three adopted – finished three months of medical procedures on 27 April. She says she first had "nipple delay" to maximise the chances of saving her nipples, before breast tissue removal and, nine weeks later, reconstruction. Pitt was by her side for "every minute of the surgeries", she said.


Jolie said her children had often asked if she might die of cancer like her mother, Marcheline Bertrand. She says now: "I can tell my children that they don't need to fear they will lose me to breast cancer.


"It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that's it. Everything else is just Mommy, the same as she always was."


Jolie adds: "I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."

Link

[Broomstick]

In this case we're talking about a woman who has the money to purchase extensive genetic testing, pay for counseling and medical consultation, and make a determination that she is at very high risk of developing this type of cancer. In such a case, where there is a known genetic risk of that magnitude, having a mastectomy (and, I'm going to guess, and oophorectomy as well to reduce the chances of ovarian cancer) after she is done with intended childbirth and nursing is considered a reasonable step. The only concern is that a woman not at high risk might opt for this surgery and all the attendant risk without needing to take such risks.

Presumably she has also had state of the art reconstructive surgery and whatever other therapy would be appropriate. I hope she has a long and healthy life.

[Terralthra]

Under the ACA, reconstructive surgery must be covered by insurance after mastectomy, and preventative mastectomy is typically covered for women with BRCA1, as it is typically found to be "medical necessity."

[Broomstick]

While that is all to the good, how much genetic testing is covered under ACA? Genetic counseling? Some? All? Variable?

The other problem is that even after Jan 1, 2014 not everyone will be covered under the ACA. There are still gaping holes in the coverage net.

[Terralthra]

Unfortunately, BRCA1 testing is expensive, because the gene is patented. I have a huge rant about this, but I'll save it in favor of saying "it's total bullshit."

[Guardsman Bass]

That patent might get turfed out by the Supreme Court. They were pretty hostile to the idea of patenting genes when it came up in trial a few weeks back.

As for Jolie, good for her. It's a shitty deal to get stuff with a genetic predisposition that makes you overwhelmingly likely to get a particular type of cancer.

Presumably she has also had state of the art reconstructive surgery and whatever other therapy would be appropriate. I hope she has a long and healthy life.

She mentioned her kids don't see anything different except some small scars, so I'm guessing the breast reconstructive surgeries went well.

[Terralthra]

The Supreme Court just ruled in Monsanto's favor on a gene patent case, so...

[Broomstick]

She mentioned her kids don't see anything different except some small scars, so I'm guessing the breast reconstructive surgeries went well.

Well, if you get surgery when you're healthy, without having had chemo or radiation, you tend to heal up much better and get better results. That's part of the rationale as well, that if you're likely to have to remove a body part do it before further damage occurs because it allows for much better reconstruction.

The Supreme Court just ruled in Monsanto's favor on a gene patent case, so...

Was that for a plant gene or a human gene? Owning plants and plant parts has a long history, owning bits of people is sort of frowned on these days in most cases.

[Esquire]

Plant parts, and as far as I understand it was more about violating contracts than actual patent stuff.

[His Divine Shadow]

I wonder when they do a thing like this pre-emptively, can they just 'scoop out the innards' so to speak and leave the skin intact, then fill that with something else, in this case most likely silicone. To minimize scarring / deformation obviously.

[Sea Skimmer]

Plant parts, and as far as I understand it was more about violating contracts than actual patent stuff.

Yes the case concerned the right of the farmer to plant GM seeds explicitly licensed for one use more then once, the guy was also actively testing the seed to ensure it was retaining its GM produced roundup resistance (at times he argued he wasn't trying to perpetuate the GM trait). The court ruled this was a violation of certain patent law which allows for such one use contracts to apply to certain products. It was a case about patent/contract law with wide implications, not what can be patented. That was simply never a consideration at all in the case.

[Broomstick]

I wonder when they do a thing like this pre-emptively, can they just 'scoop out the innards' so to speak and leave the skin intact, then fill that with something else, in this case most likely silicone. To minimize scarring / deformation obviously.

Yes, that's more or less what they do. Given you're working with a living organism it's a bit more complicated than using a large spoon to scoop the insides out, I think in this case it was a three-step procedure.

[LadyTevar]

]Angelina Jolie's surprising announcement that she'd had both breasts removed to reduce her risk of getting cancer has brought renewed attention to the controversial procedure.
Rates of women who are opting for preventive mastectomies have increased by an estimated 50 percent in recent years, experts say. And surveys show they are happy with the decision.
But many doctors are puzzled because the operation doesn't carry a 100 percent guarantee, it's major surgery -- and women have other options, from a once-a-day pill to careful monitoring. Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.

For Jolie, the chance to prevent cancer was worth losing her breasts, she wrote in the New York Times.
Like many other women having the procedure, Jolie, who is 37 and a mother of six, says she did not want to live in dread of the cancer that killed her mother at age 56. “I decided to be proactive and to minimize the risk as much I could,” she wrote.
Since genetic tests for breast cancer risks have become available, the numbers of women choosing to be tested and then to have their breasts removed has shot up, says Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota.
Jolie said she had a mutation of the BRCA1 gene, which raises the risk of both breast 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,” she wrote. She says she also plans to have her ovaries removed at some point.
In Jolie's case, her decision was "absolutely indicated," said Tuttle. At 37, Jolie is young to worry about breast cancer. But studies also show that the younger a woman is when she develops breast cancer, the more aggressive the disease is.
Other genes can raise or lower the risk that BRCA1 and BRCA2 mutations confer. And these mutations are rare. The U.S. Preventive Services Task Force recommends that only women with a strong family history even think about getting a BRCA genetic test –which is only 2 percent of U.S. women.

But why are so many women opting for surgery when survival rates for breast cancer are 93 percent if it’s caught at the earliest stages and 88 percent at stage 1?
“I have postulated that one of the downsides of breast cancer awareness is that there is a situation of hyperawareness. Women in the United States are just assuming they are going to get breast cancer,” Tuttle says. The actual rate is about 12 percent. About 1 in 8 U.S. women will develop breast cancer, and while 230,000 women were diagnosed with breast cancer last year, just under 40,000 died of it.
Dr. Sandra Swain, president of the American Society of Clinical Oncology, agrees that women shouldn't just assume they are at high risk. But she doesn't think there's any such thing as too much awareness.
"To me, you never can be too aware," says Swain, medical director of the Washington Cancer Institute at MedStar Washington Hospital Center. "I think people speaking out like Angelina Jolie are very good. She is very thoughtful about it." Jolie got genetic counseling and got an assessment of her own personal risk. "That's a good model," Swain said.
It’s hard to determine the precise number of women who are opting to have surgery for a medical condition they don't yet have. Private insurance companies have the best information, and there’s not an easy way to get it and compile a database.

Tuttle’s done a lot of research looking at how many women chose to have both breasts removed when cancer was found in one breast. Although the risk of developing cancer in the healthy breast is fairly low, many women choose to have both breasts removed when a tumor develops in one.
One study showed that women aged 55 and younger with a family history of breast cancer in both breasts – a high-risk group – had about a 16 percent risk of developing cancer in the second breast over the next 10 years. Older women would have an even lower risk. Yet the rates of prophylactic mastectomies among these women doubled between 1998 and 2005.
“It is pretty clear that the use of double mastectomy for women with cancer in one breast has exploded,” Tuttle told NBC News.
Another way to look at rates is to study women with a form of pre-cancer called lobular carcinoma in situ, or LCIS for short. LCIS does not always progress to cancer, but some women choose to have their breasts removed after a diagnosis, Tuttle says.
“Rates of prophylactic mastectomy for women with LCIS increased by 50 percent since the year 2000,” Tuttle said. He presented a study to the American Society of Breast Surgeons last week showing rates of women have preventive mastectomies after LCIS went from 12 percent in 2000 to 18 percent in 2009.
Jolie’s decision resonated with women like Lizzie Stark, 31, of Edison, N.J., who had a preventive double mastectomy two years ago after learning she had the BRCA1 gene. Her immediate response was empathy for the movie star – “This is a terrible decision to have to make” – and gratitude that Jolie chose to go public.
“I think it’ll make it easier, the more women who come out and talk about it,” said Stark.

Private insurers usually pay for both the removal and the reconstruction, including implants, if a doctor indicates the need. And the results are good if done by a good surgeon, studies show. Women usually feel good about their choice, also – surveys of women who have had double mastectomies show little regret.
But women may not realize just how serious the surgical procedure is, Tuttle says.
“I wonder if one of the reasons driving this trend is women underestimate the extent of this operation,” he said. “Prophylactic mastectomy with immediate reconstruction is a big operation. It can be five to six hours,” Tuttle says. “There can be complications and re-operations.”
And recovery can take a “good month”, he added.
“Prophylactic mastectomy is permanent and irreversible,” the National Cancer Institute cautions. “This surgery causes significant loss of sensation in the breast, which can have an impact on sexuality.”
Stark, who also had nipple-sparing reconstructive surgery, said she appreciated that Jolie made a point of saying that the surgery didn’t diminish her sexuality.
“I did feel like I lost my femininity,” Stark said. “Because it is a part of your body associated with femininity. I started wearing girlier clothes than I had before. I started wearing more makeup and plucking my eyebrows. But you don’t have to lose your femininity.”

[LadyTevar]

IF there are ways to prevent this with medication, I have to wonder if it's cheaper to have the surgery than pay Big Phrama's price for the pills.

[bilateralrope]

It might not have anything to do with cost. I took a quick look at the side effects for the mentioned drugs on wikipedia:
Tamoxifen: A long list of side effects, including increased risk of other cancer
Aromatase Inhibitors

Side effects include an increased risk for developing osteoporosis and joint disorders such as arthritis, arthrosis and arthralgia. Bisphosphonates are sometimes prescribed to prevent the osteoporosis induced by aromatase inhibitors, but also have another serious side effect, osteonecrosis of the jaw. As statins have a bone strengthening effect,[20] combining a statin with an aromatase inhibitor could help prevent fractures and suspected cardiovascular risks, without potential of causing osteonecrosis of the jaw.[21][22] The more common adverse events associated with the use of aromatase inhibitors include decreased rate of bone maturation and growth, infertility, aggressive behavior, adrenal insufficiency, kidney failure, and liver dysfunction. Patients with liver, kidney or adrenal abnormalities are at a higher risk of developing adverse events

Now lets look at the effectiveness of the options. The articles already posted provide detail. On the drugs:

Women can take tamoxifen or one of several newer drugs called aromatase inhibitors and reduce their risk by as much as 50 percent.

On the mastectomy:

Jolie says her doctors told her that her risk was 87% and that surgery had reduced it to 5%.

The mastectomy is more effective and doesn't increase the risk of anything beyond surgical complications.

I can easily see some people choosing medication, others choosing surgery, if they are well informed of the options and cost doesn't matter.

[Broomstick]

IF there are ways to prevent this with medication, I have to wonder if it's cheaper to have the surgery than pay Big Phrama's price for the pills.

Don't forget those "daily pills" also have side effects. Tamoxifen, for example, increases the risk of uterine cancer and quadruples the risk of endometrial cancer. It can also a spike in blood triglycerides, increase the risk of blood clots, lead to fatty liver disease, memory problems, loss of libido (though, to be honest, so can the psychological effects of all this), there is a genetic variant that does not utilize tamoxifen well, and it can also be rendered less effective by SSRI's.

The issues with aromatase inhibitors (which, by the way, are not compatible with tamoxifen) were covered by bilateralrope.

Not to mention you have to remember to take those pills every day, you hope you don't lose access to them, and taking tamoxifen longer than 5 years is not recommended. Really, saying pills is "easier" is misleading. They're different.

On the other hand, while the surgery has some risks, is painful, and can result in psychological issues, once it's done it's over with and once you're healed you won't have to worry about daily anything or further side effects.

This sort of complicated stuff is exactly why this decision has to be made on an individual basis by a woman consulting with competent and knowledgeable medical personnel.

[Edi]

This article (or its Finnish translations, in any case this news event) caused a massive spike in calls to the Finnish cancer advisory phone lines (maintained by organizations that try to raise cancer awareness and provide information). So at least awareness has been increased. Finns have a higher incidence of BRCA1 and BRCA2 breast cancer risk genes than average.

[Bright]

People are being spectacularly despicable about this.

http://publicshaming.tumblr.com/post/50 ... oid-breast

[Ralin]

People are being spectacularly despicable about this.

http://publicshaming.tumblr.com/post/50 ... oid-breast

I assumed they would from the moment I read the thread title. Could have predicted the exact comments.

Anyway, sucks for her that she had to do this, but I'm glad she has fewer health problems to worry about. Hope her recovery goes well.

[Broomstick]

I think she's also lucky to have Brad, as he seems to have been a prince and very supportive throughout.

The thing the losers don't get is that if you stay with someone long enough they get old (as do you) and if you live long enough everyone winds up wrinkled, toothless, saggy and bald - and that's the best case scenario. Real love sees past that. The shitstains bemoaning the loss of "titties" and a "houseful of black kids" reveal what sort of slime they are.

Yeah, I'm sure there's a loss here mourned on some level by Angelina and Brad, but they're making the trade for more healthy years together. Any of us who have had to deal with serious medical issues in ourselves or our loved ones understand that sort of trade.

[EnterpriseSovereign]

It's a pity that gene therapy couldn't be used to remove the genes in question as opposed to opting for surgery. Yeah, I could just have imagined that there would be the douchebags whining about all this. Regardless, I'd like to see the results of the surgery, as beforehand the only method I knew of reconstruction was use of implants. And considering it likely involved some of the best cosmetic surgeons on the planet, if anyone can do a great job, it's them.

[LadyTevar]

The list of side-effects would have me thinking hard about just going for surgery and getting it over with, that's for sure. The bonus is I might be able to upgrade a cup size in the recontruction

I"m not even going to bother clicking the public-shaming link, I can guess the level of immaturity there. Not worth my bandwidth.

[Guardsman Bass]

The Supreme Court just ruled in Monsanto's favor on a gene patent case, so...

Different case. I was talking about the case involving Myriad's patent.

[Vehrec]

I recall that there were some really radical surgeries for treating breast cancer not so long ago-things that went inside the chest cavity, cutting and cutting and taking out even the pectoralis muscle. I doubt Angelina had such a radical procedure, but I have to wonder-what got cut, and what got rebuilt.

[Broomstick]

It's a pity that gene therapy couldn't be used to remove the genes in question as opposed to opting for surgery. Yeah, I could just have imagined that there would be the douchebags whining about all this. Regardless, I'd like to see the results of the surgery, as beforehand the only method I knew of reconstruction was use of implants. And considering it likely involved some of the best cosmetic surgeons on the planet, if anyone can do a great job, it's them.

There are techniques that utilize fat and muscle tissue from other parts of the body instead of an implant. Like most reconstructive options there are good points and bad points to it vs. implants.

The results will be good, particularly with clothes on, even minimal clothing like a bikini, but bare there will be scars and some noticeable differences from a natural breast. Even so, the results will be much better than what cancer does to the body.

I recall that there were some really radical surgeries for treating breast cancer not so long ago-things that went inside the chest cavity, cutting and cutting and taking out even the pectoralis muscle. I doubt Angelina had such a radical procedure, but I have to wonder-what got cut, and what got rebuilt.

What Jolie got was basically a procedure to remove all the glandular and fatty breast tissue, essentially hollowing them out but leaving the external skin and the underlying muscle. Initially, tissue expanders would act as "placeholders" to prevent tissue shrinkage, and after sufficient healing, long-term implants would be inserted. As they would not be removing lymph nodes (well, perhaps one or two just to make sure there's no cancer in there) it's impossible to be certain the entire "tail" of the breast, where the tissue goes up under the arm, is entirely removed and that is, potentially, a possible source of future cancer. She also chose to keep her nipples, which are also possible spots for cancer although part of the procedures done was checking them out for cancer. Regardless, monitoring a thin "tail" under the arm and the nipple is much easier than trying to find a small node of cancer deep within breast tissue.

The old-style radical mastectomies - where they cut into the underlying pectoral muscle - was from the days when doctors thought they could simply cut out all the cancer. They were extremely mutilating and led to permanent problems with a patient's arm(s). The surgery was often called the "Halsted radical mastectomy", after a Dr. Halsted who first performed the particular sort of surgery in 1882 (back when anesthesia was cutting edge, cancer chemotherapy unknown, and medical radiation treatments yet to be discovered) and was considered the standard treatment until the mid-1970's. In the 1970's doctors started to realize that cancer could metastasize microscopically and that many women didn't need to be carved up to such an extent. These days, someone would have to have very advanced breast cancer to be considered for a Halsted procedure, something where the actual muscle underneath was cancerous.