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为什么史蒂夫·乔布斯没有选择有效地治疗他的癌症?

为什么史蒂夫·乔布斯没有选择有效地治疗他的癌症?

原作者:拉姆齐·埃米里 医学博士,麻省总医院肿瘤外科

我在回答这个问题之前犹豫了很长一段时间。为了避免存在任何有偏见的风险,让我率先声明有关乔布斯具体病例的所有细节是以第二手资料为根据的,尽管也有来自于媒体的可靠数据。我以个人的名义写这篇文章,我并不是假装我个人知道这起病例的详尽细节,我从未参加过乔布斯先生的医疗护理。我所讲的癌症数据都是来源于我所知道的生物医学研究所。

我尊重那些哀悼乔布斯过世的人们的隐私,绝对不是想要冒犯他们。我深深地尊敬乔布斯以及他的遗产。但我觉得本着他那以进步的观点来看待世界的精神,从他的病例中学习是一个有效的方式来回顾他的生活和他的遗产。

我在阿姆斯特丹做医学生的时候就花了一年半的时间研究影响史蒂夫·乔布斯身体的癌症类型,关于他的病例,我有一些有力的观点,我不仅作为史蒂夫和他工作的仰慕者,还作为一个癌症研究人员,认为他在患病的过程中错过了最佳的治病时间。

让我直接说重点吧:据说,乔布斯先生在采取常规医疗之前,选择进行了所有代替治疗方式。

他当然有权利选择采取何种治疗方式,但考虑到各种情况,假定乔布斯先生采取的代替医疗导致了他不必要的早死是合理。

请您再一次理解我并不了解他病例的具体病情,我只是在努力给出他可获得治愈可能性的一些个人见解。这些与他的病例无关,只是一些指示显示根据相关数据他的病况不可能变糟糕,却不知因何而变糟了。致使这个发生的原因还不得而知。我们在这里主要是想看看是否是他的治疗选择导致了病情恶化的发生。

首先让我澄清有关他疾病的几件事情:

神经内分泌瘤的致命性远低于寻常的胰腺癌。

媒体有一个很大的困惑就是乔布斯所得的胰腺癌。尽管他的肿瘤可能原发于他的胰腺,但我们在这里说的可不是那种预后恶劣,在胰腺癌中占95%的可怕的胰外分泌腺瘤。

乔布斯曾经说过自己患有胰岛细胞瘤,这一说法广泛流传于坊间,但胰岛细胞瘤不是一个专业术语,对于剩下的5%的胰腺癌来说,这个名字不够正确,应该称为神经内分泌肿瘤。

神经内分泌肿瘤是相对温和的癌症形式。

胃肠胰腺神经内分泌肿瘤是一系列基本保留了它们的原始功能——生产内分泌激素的肿瘤。

缺点就是,它们产生的荷尔蒙会造成种种的荷尔蒙失调,从而对机体造成破坏。另一方面,分化程度是肿瘤攻击性强弱的一个有力指标,一个肿瘤分化的程度越高, 它就越能保持它原来的众多特点,侵略性更小,新陈代谢速度更慢。

现在就来解释这些肿瘤到底有多温和:

● 在正常人体解剖中有10%的标本报告称带有这些肿瘤中的一种,但终生都没有出现过任何症状。

● 有高达30%的确诊胃肠胰腺神经内分泌肿瘤案例中这些肿瘤分化情况良好,没有成为癌症。我曾经读到过一篇文章,里面讲到胃肠胰腺神经内分泌肿瘤中最常见的类型——胰岛瘤曾在90%的病例中呈良性。

● 如果可以及时、恰当地治疗,很多人不会死于癌症,在我的病人当中,亚类患者的十年存活率高达100%。

早期神经内分泌肿瘤可以通过手术移除肿瘤来治理。

这是一个相对低风险的治理方式,与化疗和放射比较,它的缺点可以忽略不计。在很多案例中,一个简单的摘除术(切除肿瘤,在周围留下一个安全的空间)是足够的,不会留下任何副作用。

现在,关于这起具体的病例:

乔布斯有很多有利的因素显示早期的外科疗法可以治愈他的疾病。

● 乔布斯先生自己说医生们在早期的时候就发现了他的肿瘤。在很多病例中,胃肠胰腺神经内分泌肿瘤的早期意味着通过手术移除初始肿瘤,不需要摘除额外的器官,即可治愈,只有很低的机会会复发。

● 肿瘤位于一个相对温和的位置——胰腺。

● 肿瘤被声称是一个胰岛瘤,最容易治疗的亚类胃肠胰腺神经内分泌肿瘤之一。

● 肿瘤很可能属于分化良好型。乔布斯先生曾经谈到过荷尔蒙失调,这就表明肿瘤保持着它的内分泌功能,暗示着肿瘤的良好分化。良好分化的肿瘤不容易转移扩散以及飞速增长。

(看下面链接网址中的表格,可以更好地理解我所指的数据,我从《肿瘤学纪事》中选择了一篇文章作为数据来源,因为它是少数给感兴趣的人读到全篇文章的报纸:http://annonc.oxfordjournals.org/content/21/9/1794.)

但不对这些最无害的癌症进行处理也可能导致它的情况变得极其糟糕。

我近来回顾了几百例结肠癌病例,大概25%的病例中病人都是由息肉病史引起的。息肉是肠道粘膜中的良性小肿瘤。它们一开始是完全无害的,但是慢慢地,必然地,多年后,它们慢慢地失去上面提到的分化,一些最终转化成恶性的结肠癌。

实际上,人们猜测所有的结肠癌都是从息肉开始的。25%的病例把息肉割除了,但不幸的是,在结肠镜复诊检查中,一些其他的息肉已经发展为真正的癌症。这就是为什么进行检查、及时到医院治疗是很重要的。

这也解释了即使是最无害的恶性肿瘤,放任它自由发展也是一件愚蠢的事情——一个潜在的定时炸弹。

乔布斯旧日是个嬉皮士,后来是一个传统的医学论怀疑者。他对自己疾病的态度给了病情足够时间恶意扩散。

很多主流媒体,包括CNN,报道称乔布斯先生可能有两年没有寻求合适的(传统的)医学治疗。

当乔布斯先生尝试各种代替医疗方式的时候,我甚至懒得去回顾它们的失败是可悲的、无可争议地被证明了的,他的肿瘤肆虐地增长着,之后便脱离了控制。

● 乔布斯在等了如此长的时间之后才寻找常规的医疗方式,以致于他不得不进行胰十二指肠切除术,令他在2004年失去了他的胰腺和整个十二指肠。这是第一个让人担忧的信号,疾病的发展超过了最好的治疗时期去到了大肿瘤阶段,以致他的胰腺和十二指肠不能幸免于难。

● 表面上看起来乔布斯等待的时间过长使得癌细胞广泛扩散到了他的肝脏。他在患有胃肠胰腺神经内分泌肿瘤之后进行的一起器官移植的唯一原因是肿瘤细胞入侵了肝脏的主要部分,这一过程需要花费大量时间。对于大部分神经内分泌肿瘤来说,这一过程需要花费多年。这一情况可能发生在他的确诊之前,但是情况的危急随着时间的流逝呈指数增长。

● 我们随后看到肿瘤使得乔布斯的生命慢慢枯竭。看到他的体重不断减轻,慢慢地变成皮包骨头真叫人触目惊心。

然而看起来,甚至在病情的复发期,随着病情的进一步发展,乔布斯先生选择把他的时间分配给苹果公司,而不是接受化学疗法或者其他的常规治疗方式。

回答“为什么”这个问题:

每个病人对于自己的病情都有自己的看法,以及采取治疗的优先时间,或者为了更高的痊愈率,他们打算承受多少的痛苦和风险作为交换。

对于很多人来说,对医生要给他们采取治疗打算的信任是接近绝对的。我们鼓励病人去熟悉他们自己的病情,激发他们做出选择,但他们对于所有的技术以及一大堆医疗证据的能够了解的程度是有限的,不仅在于他们对专业知识的理解水平,也在于病人熟悉病情的时间。

乔布斯先生是一个自由的思考者,一个对灵性的坚定信仰者,一个素食主义者,一个有名的对常规医疗的怀疑者,他曾经短暂地拒绝整个的常规医疗。他并不孤独,我们还碰到很多人像他这样的,我们都知道在我们当中有人采取顺势疗法的,对跟“化学”搭边的一切有着众所周知的恐惧(对于那些人我总是说所有物质都是化学的,如果你觉得一氧化二氢听起来可怕,你应该停止喝水)。个人思想和选择的自由是我们现代社会的一块基石,医学界也不例外。

如果一个病人选择的代替治疗我们从事实上得知是没有用的,这常常是一个伦理难题。然而,只要病人是精神健全的,我们不可能强迫他们采取有用的治疗方式,即使知道不用的话,他们就要面对死亡了。可悲的是,即使是过去几百年当中难得一遇的天才之一,也毫无例外,对癌症的糟糕处理使他和其他人在死神面前一视同仁。

原文链接

 

英文原文:

I hesitated a long time before addressing this topic, but now that someone asked me to, I’ll just do it. To avoid any risks of bias, let me start by stating that all the details on Jobs’ specific case are based on secondary sources, albeit from reliable sources in the media. I write this on a personal title, I do not pretend to know anything about the case on a personal level and I never participated in the care of Mr. Jobs. I base all my cancer figures on sources from biomedical research known to me.

I respect the privacy of, and in no way wish to offend, anyone mourning his passing. I have the profoundest respect for Mr. Jobs and his legacy but I feel that in the spirit of his progressive view of the world, learning from his case is an appropriate way to look back on the facts concerning his life and legacy.

I have done 1.5 years of research on the type of tumor that affected Steve Jobs as a medical student in Amsterdam and have some strong opinions on his case, not only as an admirer of his work, but also as a cancer researcher who has the impression that his disease course has been far from optimal.

Let me cut to the chase: Mr. Jobs allegedly chose to undergo all sorts of alternative treatment options before opting for conventional medicine.

This was, of course, a freedom he had all the rights to take, but given the circumstances it seems sound to assume that Mr. Jobs’ choice for alternative medicine could have led to an unnecessarily early death.

Again, please understand that I have no knowledge of the specific case, I’m just trying to give insights on his a priori odds of cure. These are independent of his case and mere indicators that somehow his case turned for the worse when it statistically was improbable. What made this happen will remain in the domain of speculations. We’re here to see if his therapeutic choices are possibly what made this happen.

First, let me clarify a few things about his disease:

Neuroendocrine tumors are far less deadly than “ordinary” pancreatic cancer.

The big confusion in the media is that Jobs had pancreatic cancer. Though his tumor might have originated in his pancreas, we’re not speaking of the dreaded pancreatic adenocarcinoma that has such a horrible prognosis and makes up for 95% of pancreatic tumors.

Jobs is cited to have said himself that he had an islet-cell tumor, which is a colloquially used, less accurate name for the other 5% of pancreatic tumors, so-called neuroendocrine tumors.

Neuroendocrine tumors are relatively mild forms of cancer.

Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET’s) are a range of tumors that mostly keep their original function, producing endocrine hormones.
The disadvantage of that is the havoc they wreak on the body due to all sorts of hormonal imbalances caused by the hormones they produce. On the other hand, the level of differentiation is a strong indicator of how aggressive a tumor is: the better a tumor is differentiated e.g. keeps the features of its originator, the least invasive and prone to metastasis it is.

Just to illustrate how mild these tumors can be:

  • As many as 10% of autopsied persons in the general population have been reported to have one of these without ever having had any symptoms during their life.
  • Up to 30% of detected GEP-NETs are so well differentiated they’re strictly not cancers. I have even come across an article where insulinomas, the most common type of GEP-NETs were benign in 90% of the cases.
  • If treated appropriately and in time, most people won’t die from the cancer itself. In my series of patients, for many subtypes, the survival rate was as high as 100% over a decade.

Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor.

This is a relatively low-risk treatment that — especially compared to chemo and radiation — has negligible disadvantages. In many cases, a simple enucleation (just cutting out the tumor with a safe margin around it) is enough and leaves no residual side-effects.

Now, about this specific case:

Jobs had many favorable factors that indicate an early surgical treatment could have been curative.

  • Mr. Jobs said himself that they caught the tumor early. Early in GEP-NETs means in many cases that surgically removing the primary tumor without additional removal of organs is a curative with a low chance or recurrence.
  • The tumor was located at a relatively clement site, the pancreas.
  • The tumor was allegedly an insulinoma, one of the best treatable subtypes of GEP-NETs.
  • The tumor was probably well-differentiated. Mr. Jobs spoke of a hormonal imbalance, this points to a tumor that keeps its endocrine function, which is an general indicator of good differentiation. Well differentiated tumors are less prone to metastasize and grow rapidly.

See table below for a comprehensive illustration of the numbers I’m referring to, I chose an article from The Annals of Oncology as a source as it’s one of the few papers freely accessible for everyone interested to read the full article:http://annonc.oxfordjournals.org…

… but not treating the most innocent cancer can still cause it to go seriously bad.

I’m currently reviewing hundreds of colon cancer cases, and about 25% of them start with a patient that comes with a history of polyps. Polyps are small benign little growths in the lining of the intestine. They are absolutely harmless at first, yet slowly but surely, over years, they lose more and more of the above mentioned “differentiation” and some eventually turn to a malign colon cancer.

In fact, it is supposed that all colon cancers start as a polyp.

These 25% had polyps removed, but were unlucky enough that between two colonoscopies, some other polyp found the time to grow into a real cancer. That’s also why screening — and going there on time — is so important.

This illustrates also why leaving even the most innocent malign tumor to grow is just a foolish thing to do — a ticking time bomb.

Jobs was a hippie back in the day, and a conventional medicine skeptic now. His reaction to the disease gave the disease time to spread.

Many mainstream media, including CNN, stated that Mr. Jobs might have spent as long as two years without proper (conventional) treatment.

While Mr. Jobs was trying all sorts of alternative mumbo-jumbo I won’t even bother to go through as their failure is now sadly irrefutably proven, his tumor grew, and grew, and grew…

… and then it somehow grew beyond control.

  • Jobs waited so long before seeking normal treatment that he had to undergo a Whipple procedure, losing his pancreas and whole duodenum in 2004. This was the first alarming sign that his disease had progressed beyond a compact primary to at least a tumor so large his Pancreas and duodenum could not be saved.
  • Jobs seemingly waited long enough for the disease revealed to have spread extensively to his liver. The only reason he’d have a transplant after a GEP-NET would be that the tumor invaded all major parts of the liver, which takes a considerable amount of time. Years, in most neuroendocrine tumors. It could be that this happened before his diagnosis, but the risk grows exponentially with time.
  • We then saw the tumor slowly draining the life out him. It was a horrible thing to see him lose weight and slowly turn into a skin and bones form of himself.

Yet it seems that even during this recurrent phase, Mr. Jobs opted to dedicate his time to Apple as the disease progressed, instead of opting for chemotherapy or any other conventional treatment.

As for the “why?” question:

Every patient has another view of his or her disease and the priorities for the treatment, or how much suffering and risk they’re ready to endure as a trade-off for a higher chance of getting cured.

For most people, the trust in their doctor’s intention to treat them is near-absolute. We encourage patients to inform themselves on the subject and stimulate personal choices, but the extent to which people can go through all the technicalities and the enormous pile of medical evidence is limited not only by the level of understanding of this specialist knowledge, but also simply by the sheer time it takes to inform oneself about this.

Now Mr. Jobs always was a free thinker, a strong believer in spirituality, a vegetarian and a known skeptic of conventional medicine. He chose to reject conventional medicine altogether for a while. He’s not alone in that. We come across many people like this and we all know someone in our midst that uses homeopathy or has this known fear of anything “chemical” (to those I always say that everything is chemical, if you think dihydrogen oxide sounds scary you should stop drinking water). Individual freedom of thought and choice is a cornerstone of our modern society and the medical world makes no exception.

It’s always an ethical puzzle if a patient chooses alternative treatment that we know from fact will not work. Yet, as long as the person is mentally sane, we cannot force them to choose a working treatment, even if it means their death. Sadly, even for one of the greatest personalities of the last 100 years, there will be no exception, and badly treated cancer is just as deadly for him as for anyone else…


 

为什么史蒂夫·乔布斯没有选择有效地治疗他的癌症?
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