茱莉的选择

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Knowing
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茱莉的选择

Post by Knowing » 2013-05-14 2:30

安吉丽娜·朱莉今天披露,因为有基因缺陷,罹患乳癌和卵巢癌风险较高。已经接受预防性的双乳腺切除术,以降低罹癌风险。她真酷!
Image

My Medical Choice
By ANGELINA JOLIE
LOS ANGELES
http://www.nytimes.com/2013/05/14/opini ... ST_FB&_r=0

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.

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.

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.

Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

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.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. 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. And they know that I love them and will do anything to be with them as long as I can. On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.

I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has.

For any woman reading this, I hope it helps you to know you have options. 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.

I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery. My own regimen will be posted in due course on the Web site of the Pink Lotus Breast Center. I hope that this will be helpful to other women.

Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.

I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.
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Jun
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Re: 茱莉的选择

Post by Jun » 2013-05-14 7:11

如果我有BRCA1缺陷,恐怕我也得这么做。

(开个 tasteless 的玩笑哈,Jolie 这么瘦,其实割了之后都未必能看出差别来。)
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tiffany
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Re: 茱莉的选择

Post by tiffany » 2013-05-14 7:34

都重建了。人家的胸。

现在手术是进步多了,以前,我记得做这种切乳腺的手术说是要切掉一部分胸大肌,那就影响生活了。
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 7:57

那个基因太强劲了。害怕的说。
她说了现在技术先进,术后再造结果可以非常美丽。作为性感女神,完美肉体是神话形象的重要部分,完全可以把这个事情当私事严格保密,也有理由保密,但是她就主动选择做手术,主动站出来说,并且当作积极的事情大大方方高高兴兴的讲,这个positive role model 的力量是很大的,
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joe_cool
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Re: 茱莉的选择

Post by joe_cool » 2013-05-14 7:59

这么一系列的手术下来保险公司能cover多少?要是简单粗暴的切除手术只是为了防止癌症的发生那做手术的决定就困难多了吧。
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 8:24

没想过这问题,我现在生活在社会主义国家里有公费医疗,再也不用受医疗保险公司的鸟气了。 :mrgreen:
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tiffany
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Re: 茱莉的选择

Post by tiffany » 2013-05-14 8:31

我们已经收上公费医疗的税了,公费医疗的服务啥时候能享受上还不知道。 :mrgreen:
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 8:35

不着急,过几年就有了,先别生病,要不搬到麻州去,享受romneycare :mrgreen:
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joe_cool
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Re: 茱莉的选择

Post by joe_cool » 2013-05-14 9:23

公费医疗管基因screening和主要的切除部分我可以理解,连nipple delay和reconstruction都管那就真是社会主义好。
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 10:33

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dropby
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Re: 茱莉的选择

Post by dropby » 2013-05-14 11:13

哇,我一直都特别喜欢她。她真是太酷了。

silkworm
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Re: 茱莉的选择

Post by silkworm » 2013-05-14 11:23

酷!但真的值得么?

这个BRCA1和BRCA2基因的有害突变所导致的乳腺癌,只占乳腺癌总数的5%到10%。切除乳腺以后,不是彻底消除乳腺癌发病率,而是变成广大妇女一样的几率。

这个突变,不光导致乳腺癌,还导致卵巢癌、胰腺癌(以及男性的前列腺癌)。因此切除了乳腺,其它这些癌症还是有风险的。

另外,茱莉做的这个双侧乳腺切除,到底是大手术。她说得轻松,术后带着引流管、负压泵,那还是相当不好受的。

Jun
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Re: 茱莉的选择

Post by Jun » 2013-05-14 11:50

查出来携带 BRCA1 mutation 的人有50%的以上的几率会得乳腺癌,能降到百分之五到十的几率。而且拿掉了很多 breast tissue,其实得乳腺癌的几率应该低于普通女性了。现在还可以做 reconstruction,我觉得这种选择简直是 no brainer。

携带 BRCA mutations 的女性并非人群中大多数,所以她们的乳腺癌只占全部乳腺癌中案例的少数。这跟已知有 mutations 者的乳腺癌几率不是一回事儿。

其实这不是新事物,Ashkenazi 支的犹太女性因为长期近亲交配,普遍携带 BRCA1 & 2 的变异,好多人中年就得乳腺癌,好多年轻女性选择预防性切除。
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dropby
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Re: 茱莉的选择

Post by dropby » 2013-05-14 12:05

My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.
如果我是她我也会做。但是能不能这么正面积极地对待,就是另一回事了。所以我觉得她真酷。

silkworm
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Re: 茱莉的选择

Post by silkworm » 2013-05-14 12:16

Jun wrote:查出来携带 BRCA1 mutation 的人有50%的以上的几率会得乳腺癌,能降到百分之五到十的几率。而且拿掉了很多 breast tissue,其实得乳腺癌的几率应该低于普通女性了。现在还可以做 reconstruction,我觉得这种选择简直是 no brainer。

携带 BRCA mutations 的女性并非人群中大多数,所以她们的乳腺癌只占全部乳腺癌中案例的少数。这跟已知有 mutations 者的乳腺癌几率不是一回事儿。

其实这不是新事物,Ashkenazi 支的犹太女性因为长期近亲交配,普遍携带 BRCA1 & 2 的变异,好多人中年就得乳腺癌,好多年轻女性选择预防性切除。
嗯,有道理。

哎,如果都切除了,那为什么还有5%的乳腺癌发病率呢?是没切干净么?

跟这个基因有关的其它种类的癌,目前还是没有办法吧?
我有个印象,新闻里报道美国有一家,女儿是智力发育障碍,她爸爸做主做了乳腺切除和女性腺体的切除。

Jun
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Re: 茱莉的选择

Post by Jun » 2013-05-14 12:32

silkworm wrote:哎,如果都切除了,那为什么还有5%的乳腺癌发病率呢?是没切干净么?

跟这个基因有关的其它种类的癌,目前还是没有办法吧?
我有个印象,新闻里报道美国有一家,女儿是智力发育障碍,她爸爸做主做了乳腺切除和女性腺体的切除。
应该是还有保留一定的乳房 tissue。其他种类的癌好像风险没那么高,平时注意经常去检查就好了,到五十就可以把卵巢摘了,再吃点 hormone replacement 药。

给智障女儿切除啥啥的事儿,我有模糊的印象仿佛在哪儿听到过,或许是 Law and Order 之类的电视剧,而且好像不是因为基因变异而是别的什么原因(怕女儿怀孕)?
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silkworm
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Re: 茱莉的选择

Post by silkworm » 2013-05-14 13:16

要是切,还是全切干净了为好啊。
乳腺癌患者们,最怕的就是一边切了,治疗完了,另一边发作了。

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Re: 茱莉的选择

Post by 豪情 » 2013-05-14 14:32

reconstruction 一般保险据说是管的。如果没有这么多女性,包括名人们制造社会关注,声音没那么大,保险肯定不会管那么多乳腺癌的检查治疗。她出来讲的意义不仅在于正面模范,提醒大家注意, 也推动保险和医疗监管行业。
相比之下,国内名人做的很不够,甚至有很多负面典型。
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 15:15

silkworm wrote:要是切,还是全切干净了为好啊。
乳腺癌患者们,最怕的就是一边切了,治疗完了,另一边发作了。
她文章里说决定接受预防性手术,从双乳乳腺切除开始,因为这手术更复杂,也因为基因决定她得乳腺癌概率87%,远高于子宫癌概率50%。看样子是打算子宫过几年切。至于是把乳房全切掉,还是做到基本外型不变留有乳头,这是个人选择吧。

我跟踪读了点资料,NHS 是建议一边乳腺癌得患者查这个基因,家族同时有乳腺癌和子宫癌病史。如果有,应该考虑双侧切除乳腺或者子宫。

这些都是很私人的事情,不公开也没什么可指责的。不过她做的这么大方,语气这么正面和胜利,我觉得非常棒。
哦,说个逗的,BBC新闻说这事时管Brad Pitt 叫她老公。他们订婚有一阵儿,其实还没结婚,不过孩子都养了六个,也难怪记者糊涂。
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小汉
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Re: 茱莉的选择

Post by 小汉 » 2013-05-14 15:58

原来这里早开了个话题。朱莉是很强大,简直象科幻片里的未来战士。整个事件非常后现代,乳房于母性与女性的意义被一再颠覆重建。

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Re: 茱莉的选择

Post by 幻儿 » 2013-05-14 16:37

Bravo Angelina Jolie for sharing this! :admir002:
不但增加大众对这个病的了解,也告诉大家即使是最最美丽富有的人也会遭遇生命的荆棘,也会被迫做出艰难的选择,甚至要割乳求生。
武侠小说里动不动就有人中毒然后需要断手/臂求生,一般还要犹豫不忍呢,AJ为了一个并不切近也不确定的早逝而迈出这一步,而且毫不不自怜自艾,而是为自己的决定以及为现在的自己骄傲,还跟大众分享心得。我真佩服她!

silkworm
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Re: 茱莉的选择

Post by silkworm » 2013-05-14 20:54

Knowing wrote:
silkworm wrote:要是切,还是全切干净了为好啊。
乳腺癌患者们,最怕的就是一边切了,治疗完了,另一边发作了。
她文章里说决定接受预防性手术,从双乳乳腺切除开始,因为这手术更复杂,也因为基因决定她得乳腺癌概率87%,远高于子宫癌概率50%。看样子是打算子宫过几年切。至于是把乳房全切掉,还是做到基本外型不变留有乳头,这是个人选择吧。
小K,你误解我的意思了,我说的切干净是针对这个:
Jun wrote:
silkworm wrote:哎,如果都切除了,那为什么还有5%的乳腺癌发病率呢?是没切干净么?
应该是还有保留一定的乳房 tissue。
对于基本外形不变、留有乳头,这是在乳腺癌患者的切除确定有癌症的乳房时,已经多多少少有在做了。以前的mastectomy是直接齐根切除,多余皮肤去掉,然后愈合期间上压力泵压紧。现在有些医生可以开小刀口,“掏空”内部组织,保留暂时多余的皮肤,以便之后的整型手术。

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Re: 茱莉的选择

Post by vivi » 2013-05-14 23:01

我认识一家犹太人,妈妈和乳腺癌斗争了18年后去世了。女儿因为从小妈妈就进进出出医院一直抑郁,后来结婚生了俩娃也查出这个基因,也选择双切了。其实就是个她的乳房她作主的事儿,那么多人隆大胸也没人说啥。乳房这个除了喂奶就是纯摆设儿的东西,早切早好。那么多女人死于乳腺癌,what a waste!
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 23:08

AJ为了一个并不切近也不确定的早逝而迈出这一步
87% 的概率还不确定?

回答蚕,具体我不知道,但是NHS也说术后可以降低到5%,也许手术就是无法完全清除乳腺组织?呼唤妇科专家解释。
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dropby
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Re: 茱莉的选择

Post by dropby » 2013-05-14 23:09

这个预防性切除,我们这公费医疗也管的。显然医学上是推荐的做法,观念上我可以理解很多人不易接受。所以茱莉站出来,真是造福众生的。

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Re: 茱莉的选择

Post by silkworm » 2013-05-14 23:10

我是觉得这么大个决心下了,这么大个手术做了,务必清理干净,最好把乳腺癌降低到零么。

就是这话,隆胸的人还那么多呢,也有人缩胸,自己决定切,自己做主。

到底要不要捐献器官,要不要do not resuscitate,每个人的界限都不同呢。而且太多例子证明,自己觉得想清楚了,或者替家人想清楚了,事到临头还免不了改主意。

Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-14 23:17

我认识一超级大胸姑娘想减胸,健保公司不让。 :mrgreen: 我羡慕嫉妒恨的表示不理解,她痛诉大胸的苦楚,背痛腰疼什么的。
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Re: 茱莉的选择

Post by 豪情 » 2013-05-14 23:35

减胸也是比较大的手术吧, 比隆胸还大点? 听起来就害怕.
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-15 1:31

不知道,应该不小。不过大胸对健康慢性危害不少,主要是脊椎长期过负导致的,所以当事人苦处很多的。
生殖系统一过年龄都是摆设,还特别容易先掉链子出毛病。据说男人前列腺癌比例也特高,基本到了七八十没得跑,就是绝大部分都很慢性,再过二十年也不危害声明,不治也没所谓。
茱莉站出来的另一个好处是可以敦促健康保险公司cover 这个基因测试。
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Re: 茱莉的选择

Post by joe_cool » 2013-05-15 5:20

如果保险公司能cover这个3000刀的基因screening那就是好大的进步了。我有个女友的妈妈和姐姐都患乳腺癌,妈妈60多岁去世姐姐术后至今超过5年,她每年做一次还是两次造影检查,保险并不cover这个基因screening。
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Re: 茱莉的选择

Post by Jun » 2013-05-15 6:03

我也不是很清楚为什么做了手术之后仍然有 5% 的可能性,或许手术本身就不能把乳腺组织彻底除干净,或许医学上认为把乳腺组织彻底挖干净对身体损伤太大,得不偿失。不过我觉得 5% 的几率是完全可以接受的,无 BRCA 基因变异的普通妇女患乳腺癌的几率在10%左右。再说了,借用 The Onion 的一条 headline: World Death Rate Remains Steady at 100%。 自古人生谁无死,医学所追求的不过是 1. 尽量推后死亡的时间,2. 尽量提高活着的 quality of life (后面一条美国医生还做得特别差)。BRCA 基因是个特例,致病率特别高,其他的各种疾病的各种基因,以及各种预防手段,都是 a number's game,但是选择就没那么 clear cut 了。例如每日坐着8小时以上的人早死率比每日坐着4小时以下的人平均高20%(换言之,寿命短上好几年),吓人吧?可是让大家把工作椅子拿掉,换成站着工作,不知有几个人能坚持。

胸太大确实会造成背痛且影响到锻炼身体。
此喵已死,有事烧纸

silkworm
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Re: 茱莉的选择

Post by silkworm » 2013-05-15 7:52

From NIH website:
How effective is preventive mastectomy in preventing or reducing the risk of breast cancer?


Existing data suggest that preventive mastectomy may significantly reduce (by about 90 percent) the chance of developing breast cancer in moderate- and high-risk women (2, 6, 7). However, no one can be certain that this procedure will protect an individual woman from breast cancer. Breast tissue is widely distributed on the chest wall, and can sometimes be found in the armpit, above the collarbone, and as far down as the abdomen. Because it is impossible for a surgeon to remove all breast tissue, breast cancer can still develop in the small amount of remaining tissue.

幻儿
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Re: 茱莉的选择

Post by 幻儿 » 2013-05-15 7:55

我也认识一个大胸姑娘一直想做减胸,想从E/F减到B/C。一来运动不方便,二来买衣服不方便(胸部总是紧),三来她有时还是觉得自卑,老想把胸藏起来,四就是乳腺癌的危险--她妈妈去年得了乳腺癌,切除了,后来一度又发现癌细胞,后来又做了什么什么控制住了。于是她还去做检查,医生说虽然她胸大,但大部分是fat,乳细胞还是乳腺细胞什么的不比平均数高。

Elysees
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Re: 茱莉的选择

Post by Elysees » 2013-05-18 22:14

Jun wrote:如果我有BRCA1缺陷,恐怕我也得这么做。

(开个 tasteless 的玩笑哈,Jolie 这么瘦,其实割了之后都未必能看出差别来。)
茱莉虽然瘦,胸可不小。我模糊从那里听过一耳朵,似乎是胸大的人本身患乳腺癌的几率就比胸小的人高?
我自横刀向天笑,笑完我就去睡觉。

Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-05-28 6:47

昨天听到新闻,朱莉的姨妈刚因为乳腺癌过世。她发现有乳腺癌后就把卵巢切掉了,跟乳腺癌斗争了十年之后去世。朱莉的妈妈是卵巢癌。她妈那边全是癌症死的:叔叔,祖父,祖母。这个基因变异表达能力真是太强劲了。 :roll: :roll: :roll: :roll: :roll:
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2013-06-03 1:46

Never thought I would say this, but here it is: her new boobs look great!

Image
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qinger
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Re: 茱莉的选择

Post by qinger » 2013-06-04 0:05

我怎么觉得她比原来美了,就连已经残了的BP也看上去顺眼很多。
现在偶是胡军的扇子。

Knowing
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Re: 茱莉的选择

Post by Knowing » 2014-08-29 8:03

说起来,她和皮特终于结婚了。在他们自己的法南酒庄里举行了一个二十个人的小婚礼,六个孩子倒是一个不拉的都派上了用场,最大的两个伴着茱莉走进来,两个托婚戒,两个撒花瓣。
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tiffany
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Re: 茱莉的选择

Post by tiffany » 2014-08-29 8:23

替毕衰锅皮特松口气,终于有名分了! :mrgreen:
乡音无改鬓毛衰

Elysees
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Re: 茱莉的选择

Post by Elysees » 2014-08-29 12:08

她跟她爹还没和好?还要她孩子give her away?
话说他们之前不是说等所有人有了平等结婚的权利他们就结婚。去年联邦承认同性恋婚姻,所以可以结了?
我自横刀向天笑,笑完我就去睡觉。

Knowing
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Re: 茱莉的选择

Post by Knowing » 2014-09-01 2:40

应该是因为联邦现在承认同性婚姻了吧。她和她爹说是和解了,关系疏远的很,结婚就没通知,是这两天记者问才知道的。pitt 全家人倒是都在。乔治克鲁尼也没被邀请,不知道有没有不爽--还说是好朋友呢!还一度谣传说要在他的lake como 大宅结婚呢!哼!等他结婚也不请他们! :mrgreen:

昨天我一对纽约弯蜜也婚了。可爱!说起来他们都办过好几次仪式了,一开始在一起弄过个小仪式,后来civil union 又弄过一次仪式,现在结婚又来一次!
英国同性婚姻刚合法,很搞笑的是,两人如果civil union 过,现在不能直接结婚,得申请把civil union 解除--或者等年底法律修改。
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Knowing
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Re: 茱莉的选择

Post by Knowing » 2014-09-03 3:14

真别致,她的婚纱和头纱上绣的是他们孩子画的儿童画。当然是名设计师精心挑选和排布的,所以看上去仍然很美貌.

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豪情
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Re: 茱莉的选择

Post by 豪情 » 2014-09-05 23:34

Elysees wrote:她跟她爹还没和好?还要她孩子give her away?
话说他们之前不是说等所有人有了平等结婚的权利他们就结婚。去年联邦承认同性恋婚姻,所以可以结了?
是啊, 连朱莉的前女友都结婚了。也许他们就是等她? :mrgreen:
谁道闲情抛掷久?每到春来,惆怅还依旧。

tiffany
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Re: 茱莉的选择

Post by tiffany » 2014-09-08 8:09

我在网上看见有人贴她婚纱细节,小孩儿真逗!还画了比皮特前妻,旁边儿注着:没准我的妈妈?
乡音无改鬓毛衰

Knowing
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Re: 茱莉的选择

Post by Knowing » 2016-09-20 9:33

他们也要离婚!我再也不相信孩子能巩固家庭了!

http://www.bbc.co.uk/news/entertainment-arts-37422843
Angelina Jolie has filed for divorce from Brad Pitt, the actress's lawyer has confirmed.
Robert Offer said the actress filed for "dissolution of marriage" on Monday, adding the "decision was made for the health of the family".
"She will not be commenting, and asks that the family be given its privacy at this time," Offer added in the statement.
The couple have been together since 2004 but only married in August 2014.
The couple have six children together - Maddox, Pax, Zahara, Shiloh, and twins Knox and Vivienne.
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dropby
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Re: 茱莉的选择

Post by dropby » 2016-09-20 10:15

你居然相信过孩子可以巩固家庭?我大惊失色地说。常态是当妈的第一年夫妻矛盾冲突加剧。说不定就是因为娃太多才导致离婚的。

豪情
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Re: 茱莉的选择

Post by 豪情 » 2016-09-20 10:43

皮特年老色衰了。
谁道闲情抛掷久?每到春来,惆怅还依旧。

笑嘻嘻
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Re: 茱莉的选择

Post by 笑嘻嘻 » 2016-09-20 10:56

是啊。有娃会放大家庭矛盾。年老会放大自身毛病。
云浆未饮结成冰

helenClaire
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Re: 茱莉的选择

Post by helenClaire » 2016-09-20 12:02

估计14年结婚给这段关系续了两年命。

豪情
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Re: 茱莉的选择

Post by 豪情 » 2016-09-20 12:49

何必费事结婚。 :mrgreen:
谁道闲情抛掷久?每到春来,惆怅还依旧。

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