016年12月6日-10日,在第39届圣安东尼奥乳腺癌研讨会上,威廉·麦奎尔纪念奖获得者Eric P. Winer教授发表了获奖演说,震撼和感动了在场的每一位听众,作为乳腺癌领域国际知名专家,他一直专注于乳腺癌的临床研究,取得了令人瞩目的骄人成就
编者按:2016年12月6日-10日,在第39届圣安东尼奥乳腺癌研讨会上,威廉·麦奎尔纪念奖获得者Eric P. Winer教授发表了获奖演说,震撼和感动了在场的每一位听众,作为乳腺癌领域国际知名专家,他一直专注于乳腺癌的临床研究,取得了令人瞩目的骄人成就,可是在光辉的背后,他也是一位HIV、血友病和肝炎患者。《肿瘤瞭望》有幸邀请Eric P. Winer教授进行了专访,让我们一起聆听这段传奇的感人故事。
Eric Winer 教授:今年2016 SABCS McGuire演讲时,我不仅谈到了乳腺癌的问题,同时也谈到了我个人的故事。我这样做是希望通过我的故事可以去帮助其他人,帮助听众中的一些患者和我的医生及科学家同事。
与同龄人相比我有很多健康问题,因为我的祖父有血友病,所以我出生就是血友病患者。13岁之前,经常面临关节出血问题,一直在进出医院的状态。13岁时,凝血因子VIII的问世改变了我的命运,使我成为了一个比较正常的少年。我上了大学,那时我认为血友病是我的一个礼物,因为它让我用与常人不同的方式去看待这个世界,我承认这并不是我期望的礼物,但它确实使我变得更加积极。我最初以为我想成为一名医生,最后学习俄罗斯历史,但在大学毕业后,我仍然想成为一名医生并去了医学院,毕业后我做了内科医生,从事肿瘤学工作。
但是成长的道路上充满了荆棘和坎坷,当我还是医学生时,艾滋病开始流行了。后来才知道,几乎所有接受凝血因子VIII治疗的血友病患者都感染上了艾滋病毒和丙型肝炎。从最初说艾滋病很少会发病,到后来变成每个人都会发病和死亡,就在人们对艾滋病毒诚惶诚恐时,我结婚了并有了三个孩子。
艾滋病不是任何人想要得的疾病,实际上许多人看不起艾滋病毒感染者。他们认为艾滋病是通过静脉吸毒感染的,而且当时人们对同性恋的态度比较偏激,因为同性恋人群中艾滋病发病率较高,所以很多人歧视同性恋。对艾滋病毒感染者也并没有表现出更多地慷慨,大家担心艾滋病毒会通过偶然的接触传播,甚至怀疑医生可能会将病毒传染给患者。那些年,因为担心自己和我的孩子被社会排斥,我极度自卑和沮丧。基本上,只有我和我的妻子了解我的健康问题,那是一个非常孤立的经历。
非常庆幸的是,社会的态度变了,新的治疗方法出现了,事实上,艾滋病对我来说已经不是问题。从艾滋病的角度来看我的身体情况,从之前的非常不好,到现在变得好多了。此外,我还有丙型肝炎,需要干扰素联合利巴韦林治疗,肝脏的门脉高压引起严重的胃肠道出血,最终做了分流手术。所以在我20多岁,30多岁,40多岁和50多岁时,我经常要面临的就是我的健康问题。说实话,我从来没有想过我会活着看到我的孩子长大,也不会相信我现在所从事的职业。值得庆幸的是,在过去的8年里,我一直很好,我仍然在治疗我的艾滋病,我的丙型肝炎已经治愈了。
在这过程中,我学到了很多道理,但还有更多等待我去领悟学习。人们普遍认为,疾病可以使人成为不同的人,使他们看到光和希望,并重新规划生活,从不生气,从不对子女喊骂,在某种程度上变得更圣洁。但并不是这样的,我有时对我的孩子们大吼大叫,尽管知道我可能活不到10年后来向他们道歉。
我觉得我能够很好地处理我的健康问题有两个原因:首先,我从小就一直在面对健康问题,所以我有很多的经验。其次,作为医生我非常小心,可以主动去管理我的疾病,而不是等待它的进展,我可以掌管我的生活,而不是我的疾病来决定我的生活。
非常重要的一点是,当我们治疗患者时,我们应该尝试尽自己最大的努力去帮助他们,时刻谨记,患者并不是疾病。人可能会生病,但在生病时生活还是要继续,不要被困难打垮。医生必须帮助患者积极的面对,在糟糕的生活中看到一线希望,有些人可能会迷失自己,但我们可以帮助他们度过困境,重拾对生活的希望。
从我的例子中可以发现,科学在进步,新的治疗不断出现。事情的发展总是时好时坏千回百转。新的治疗的出现,使我的血友病控制的越来越好。对于艾滋病毒和丙型肝炎也是如此,(虽然我的丙型肝炎没接受到最新的治疗方法,但那些陈旧的方法仍然取得了不错的效果),尤其是,现在丙型肝炎的治疗非常容易。
最后,一个重要的领悟是,每个人都会面临一些难题。世界上几乎没有谁的生命是完美的,使他们不用面对生活中的任何挑战。对于我来说是自己的健康问题,对别人来说,也可能是其他家庭成员的健康问题。对于其他人来说,这可能是另一种痛苦,但必须记住,这是生活的一部分,最重要的是要尽已所能继续前进。我很感谢我已经将能做之事都做到了,我觉得自己是非常幸运的人,但并不是说我希望自己必须面对这些问题,正是这些问题使我变得不同,在最艰难的时候,战胜它们让我成为一个更坚强的人。
这就是我的故事,分享给大家也许会帮助到其他人。我很高兴地看到,当我在这次圣安东尼奥乳腺癌会议上向我的8000多位最亲密的朋友讲述这个故事时,人们似乎很欣赏它,这对我来说非常有意义。
Eric Winer Professor: I decided this year when I was giving the McGuire Lecture at SABCS 2016 to not only talk about breast cancer but to talk about my own personal story. I did that with the hope that talking about my story would help other people; that it would help some of the patients in the audience; and that it may be of some interest and some use to some of my physician and scientist colleagues.
I have had a few more medical problems than the average person my age. I have had medical problems since I was born because my grandfather had hemophilia and I was born with hemophilia. When I was a young child up to the age of 13, I had a lot of bleeding problems in my joints and I was in and out of hospital all the time. When I was 13, factor VIII concentrates were developed and that changed my life to being a pretty normal teenager. I went on to college and when at college, I thought that having hemophilia had been a gift because it had allowed me to see the world in a different way to most people. I recognized it was a gift that I certainly didn’t ask for, but it was something that I could still see a positive in. I initially thought I wanted to be a doctor. I ended up studying Russian history, but at the end of my university training, I still wanted to be a doctor and I went to medical school. When I finished medical school, I did a residency in internal medicine and then oncology.
But there were complications along the way. When I was a medical student, the AIDS epidemic started. As it turned out, virtually everybody with hemophilia who received factor VIII concentrates was infected with HIV and hepatitis C. Initially, they said very few people with HIV would get sick, and then that changed to everyone would get sick and die. By the time people were making these dismal predictions about HIV, I was married and had three children.
HIV was not a disease that anybody wanted to have and indeed many looked down on people with HIV. They thought it was a disease contracted through intravenous drug use and in a time when people were much more narrow-minded about the gay movement, there was a lot of discrimination against gay people because of the incidence of HIV in the gay population. There wasn’t a lot of generosity shown to people with HIV. It was also worried that HIV would spread through casual contact and therefore that doctors could give their patients HIV. During all of those years, I worried a great deal about that stigma, about being ostracized, about my children being ostracized. To a very large extent, my wife and I kept my medical problems to ourselves, which was a pretty isolating experience.
Thankfully, attitudes in society changed. New therapies came out. And in truth, HIV became a non-problem for me. My health from an HIV standpoint, which initially wasn’t good, became much better. But there were other problems. I had hepatitis C, which required treatment with interferon and ribavirin, and on top of that I developed portal hypertension and had very significant gastrointestinal bleeding that ultimately led to the need for a shunt procedure. So over the course of my late 20s, 30s, 40s and early 50s, I was dealing with major health problems on a regular basis. In truth, I never thought I would live to see my children grow up and never would have believed the type of career I have had. Thankfully, for the last 8 years, I have been entirely well. I still take treatment for my HIV, my hepatitis C is cured.
There have been some lessons that I have learned, and some lessons I haven’t learned from all of this. It is widely believed that people with medical illnesses become different people,they see the light and reprioritize their lives and never get mad and never yell at their children and are somehow more saintly. I can tell you that is not the case. I yelled at my kids plenty, in spite of knowing that I might not be alive to apologize for it ten years later.
I feel I was someone who was able to cope very well with my medical problems for two reasons. Firstly, I had been coping with medical problems since I was a child, so I had a lot of experience. The other is that, as a doctor, I had access to great care and I could manage it so I didn’t have to wait for procedures and I could live my life and not have my medical problems take over my life.
It is important when we take care of patients that we try to help them cope as best as we can and we should remember that patients are not illnesses. People may have an illness, but there is a lot of life that goes on in addition to that illness, so we have to be careful not to take over that life. We have to help people see the positive aspects or the silver lining in every bad situation when we can. Some people can’t see that themselves, but we can help them see that. Sometimes that helps them deal with their situation.
Finally, we have to help people be hopeful. In my case, science moves forward,there are new treatments all the time. Something that may be very dismal one year may be much better the next. For my hemophilia, treatment come out that made my hemophilia better. And the same for HIV and hepatitis C (although I was not able to take advantage of the newer advances for hepatitis C and got some of the “bad old” treatment, which still worked anyway). Now, the treatment for hepatitis C is so much easier.
The other big lesson is that everybody is dealing with something. There are very few people in this world who lead unblemished lives and who aren’t confronting some challenge in their life. For people like me it is going to be health problems. For others it is health problems of a family member. For someone else, it may be another kind of trauma. We all have to remember that this is part of living and what is critical is to just move on if you can. I am very thankful for the fact that I have been able to do all of the things I have been able to do, and I feel like a very lucky person. Not that I wish I had had to deal with any of these problems, but I know that I am different because of those problems. As hard as it has been at times, getting through them has made me a stronger person.
So that is my story. I was telling it to perhaps help other people. I was very gratified to see that when I told this story at this San Antonio Breast Cancer Meeting to 8000 of my closest friends that people seemed to appreciate it. That has meant a lot to me.