卵巢癌 它被称为“沉默杀手”,因为它的早期症状——比如腹胀, 放屁和尿频——很容易被忽视. 通常直到它扩散到卵巢外才会被发现, 使其更难治疗.
卵巢癌后的另一条道路
When Helene Jaffe's 卵巢 cancer was caught, she had a grapefruit-size tumor that had metastasized. Despite daunting odds – her doctor estimated her chances of survival at about one in three – Jaffe not only beat back the cancer, 她从复发中活了下来. 确诊20年后,她过着完全不同的生活. “在任何改变人生的事件之后, you examine where you are and where you want to be and lay out a different path,她说. “你不会把时间浪费在你不喜欢的事情上."
众所周知,卵巢癌很难在早期发现. 你是怎么被诊断出来的??
我不舒服,但用今天的话说,我不了解自己的身体. 因此,那些非常具体的迹象表明我没有很好地避开我.
One of the signs of 卵巢 cancer is a change in urinary and bowel function, which I did notice. 我去看了泌尿科十大赌博平台排行榜. He palpated me and told me to go have lunch and come back in an hour for a sonogram.
做完超声波检查后,放射科十大赌博平台排行榜牵着我的手把我领到候诊室, 我丈夫和女儿坐的地方. 我们在送女儿去机场的路上. 放射科十大赌博平台排行榜说:“我们已经确定你有一个非常大的肿瘤."
I told her that I'd go to the airport with my family and come back afterward. 她说:“我的老师. 杰夫,我不能放你走. 我已经给你的妇科十大赌博平台排行榜打过电话了,他在等你.她陪我走过两个街区,来到妇科十大赌博平台排行榜那里. 这是一次非常难忘的经历.
十天后,我有一个总的 子宫切除术之后进行了将近一年的化疗.
癌症进展到什么程度?
At the time, my doctor told my family that I had a 33 percent chance of survival. 我很幸运地得了一种癌症, 上皮癌, 这是可以治疗的, but the tumor was the size of a very large grapefruit and the cancer had spread all over. 我是一团糟.
我的情绪也一团糟. 我是我所有朋友中第一个不得不面对这种事情的人, 那时我还比较年轻. 我很害怕,因为没有人知道卵巢癌. I found out through some digging that my father's sister had had 卵巢 cancer. Her daughter was diagnosed with breast cancer six weeks after I was diagnosed.
卵巢癌被称为德系犹太人的疾病. 这并不是说非犹太女性不明白, 但是乳房增生, 卵巢, prostate and colon cancer in the Ashkenazi [Eastern European] Jewish population.
所以你做了基因测试?
Five years after my surgery, I came to UCSF with my daughter for genetic testing. 我们得知我是BRCA2阳性,我的女儿也是. 我做了双乳切除手术 Dr. 劳拉·埃瑟曼 [UCSF breast surgeon and director of the Carol Franc Buck Breast Care Center], 我做了TRAM皮瓣重建. My daughter had a prophylactic oophorectomy [removal of the ovaries] when she was 40. 她也有一个女儿. We're very fortunate that genetic testing is available and can help us make the right decisions about our health.
诊断后你的生活发生了什么变化?
我有一种全新的生活方式. 锻炼是其中非常重要和主要的一部分. I do it so I'll be in great physical condition in case the cancer comes back, which it did in 2001.
我改变了我的饮食习惯. 我花了一段时间才说服我丈夫,但现在我们都是土食者了. 我们每周都去农贸市场. I buy directly from local fisherman and farmers; I don't buy in the stores. 我们按季节进食. 我不知道有多久没在店里买鸡蛋了. 但我们年纪大了,有时间. 对于两个工作的父母来说,做我们所做的事情要困难得多.
你做出选择,你不会把时间浪费在你不喜欢的事情上. 你了解死亡. 当我年轻的时候, 如果我在报纸上看到一位80岁的老人去世了,我就会想, 他的一生多么充实啊. 但现在我丈夫73岁了,80岁似乎并不遥远! 生命何时结束?? 当我们停止运转.
我们更多地旅行. 我们又去了非洲. I don't think I could ever go to the zoo again, after seeing the animals roaming around their land. 这是一次非凡的经历——我不得不掐自己.
我每天都做感恩祷告. 我从不认为我所拥有的是理所当然的. 我不信教,但我有一点精神上的. 我丈夫取笑我, 但我觉得我的生活很美好, 我需要承认这一点.
任何改变人生的事件, 不管是疾病还是别的什么, you examine where you are and where you want to be and lay out a different path.
你开始为卵巢癌研究筹款.
我的一个好朋友说,让我们为这种疾病做点什么吧. 所以我们在加州大学旧金山分校成立了海伦·贾菲卵巢癌基金. It's all grassroots: I hand-address every envelope; I write every thank-you note. 我们已经募集了20多万美元.
我们的主要目标之一是让人们知道这些症状. We started out hoping to have tools to test for the disease, but it's very evasive. Now we're just trying to find a treatment that will get us well and mitigate the difficulties of dealing with the disease. When I was sick, my treatment protocol was 15 years old, and they're still using it. 现在他们有一种新药开始了第三阶段的试验, 我希望它能奏效,因为我们需要一个新的突破.
There's not a lot of research being done on 卵巢 cancer for one very important reason, 也就是33,每年有000名妇女被诊断出患有此病. 哪个制药公司会从这些数字中发财? 这就是为什么要从基层筹集资金, 就像我们现在做的, 或来自NIH[美国国立卫生研究院], 很重要吗?.
这是海伦的护理团队
癌症复发时你是怎么治疗的?
2001年我复发了. 它被一个 ca - 125测试 经PET扫描确认. I had surgery and more chemotherapy, but the chemotherapy wasn't very effective. 我的[CA-125]指数既没有上升也没有下降. 最后,在十大赌博平台排行榜的允许下,我停了一些药. 我的体重增加了很多,感觉很糟糕, 如果我的数字没有下降, 有什么意义呢?? 当我停止服用后,我的体重下降了,我的数字也下降了.
复发后,我真的尽量避免压力. 我把所有的家务都交给了我丈夫. 在掌管这家多年之后,我辞职了.
你不想做管理方面的工作?
我什么都不想做. 我想读书,我想照顾好自己. 我认为当你患有危及生命的疾病时,会有自私的成分, 我不介意, 因为我在很多层面上都很慷慨. 我总是陪伴着我的朋友和家人. I don't use the "cancer card" – at least I don't think I do – but I do understand my own mortality and I don't want to do what I don't want to do.
你给别人的是 加州大学旧金山分校同伴辅导员 对于其他面临卵巢癌的女性.
是的. 这是非常值得的. We don't hear a lot about 卵巢 cancer, so I think the fear factor is greater. It's important for patients to know that women with this cancer do survive – although I don't like to use the term survivor, 因为幸存者也会死去. 我没有说我是幸存者,我说我是NAD,即“无活动性疾病”.“如果我有一个按钮,它就会这么说.
你对其他面临癌症诊断的人有什么建议吗?
你不想过度研究一个问题. The web can be your friend but it can also be your enemy, particularly with medical issues. So find those one or two doctors with whom you have a wonderful relationship and ask them the right questions.
The first time around I had not a clue what to ask – you're in alien territory, called disease. 这就是同伴支持可以提供帮助的地方.
问什么才是正确的问题?
What is the origin of the disease, and what are all of the possible ways of handling it? Is the cancer small enough to be operated on, or does it have to be shrunk prior to surgery? 如果有,是什么药? 告诉你的十大赌博平台排行榜, 我想深入了解我的疾病, 理解我的治疗, 了解我的结果. 有什么是我没问而需要知道的?
告诉你的十大赌博平台排行榜你想活下去是很重要的. 我告诉我的十大赌博平台排行榜,我. 想要. To. 生活. 我希望你能尽一切可能确保我安然无恙. 你想要什么器官都行,后果由我来承担.
问, 当你给我开刀确定这里有什么危险的时候, 有哪些可能会发生呢? I learned the night before my surgery that there was a chance they would resect [remove] my bowel.
还有其他建议吗??
Some women are going through it alone; some are going through it with a partner who doesn't understand what they're going through. 让你信任的人来教育你的伴侣. 伴侣可能对我们的需求不敏感. My husband always saw me as a powerful woman – he didn't understand seeing me weak. 他没有意识到我需要我真正需要的帮助.
保险可能会有很多问题. If you can, assign a good friend, partner or spouse to deal with that for you. Call your insurance company when you're diagnosed and give your permission for that person to deal with insurance matters on your behalf. 不要试着自己去做,因为这会让你不知所措.
了解你在保险方面的权利. 我生病的时候,保险公司给我出了很多问题, 所以我打电话给芭芭拉·鲍克瑟的办公室.S. 他把我介绍给萨克拉门托的保险专员. 当我向他们解释发生了什么时,他们告诉了我, "Call your insurance company and ask them if they would like to continue doing business in California.“那周我收到了保险公司的支票!
安排好你的护理人员:谁会开车送你去赴约, 谁会带食品来, 谁来处理保险. 这是你进入疾病过程时要做的第一件事. 让你所有的队员就位. Normally a dear friend will be the point person, so the patient won't be disturbed.
On good days, surround yourself with people you love, doing things you enjoy, eating foods you love. 不要害怕告诉他们回家. 试着不要为自己感到难过.
朋友永远不知道该说什么,所以他们说错了话. 他们说错话了. 原谅他们吧. They may be thinking they're glad they don't have the disease; that doesn't mean they wish it on you.
癌症引发了很多愤怒. 这是真的,你无法让它消失. 你需要引导它. One day you'll look back on the experiences and won't be able to remember those little nuances that were so frustrating to you.
笑能走很长的路. 我生病的时候,我哥哥给我带了一整盒约翰尼·卡森的剧集.
这可能会让你对自己感到难过.
是的. 但你有权利:允许自己为自己感到难过. 允许自己哭泣. 我发现哭是很好的宣泄方式. When I got into the shower in the morning, I took in a deep breath and just let it all out. 这对我来说就像是一种练习.
I've given that advice to men and women because you can hear in their voices how pent-up they are. There's this idea that you have to be brave – but you're frightened and it's OK to let it out.