编者按：癌症患者所面临的决策通常多且复杂，目前医患共同决策模式在癌症患者群体中应用较为广泛。在第七届晚期乳腺癌国际共识会议（ABC7）“Patient advocacy session:Complexities of shared decision making”上，多位专家就患者的共同决策进行了讨论，《肿瘤瞭望》特邀采访了该专场主持人——Ginny Mason教授，请她就乳腺癌患者常见的心理问题及处理方式进行了介绍。

 

Ginny Mason教授：这通常涉及多方面的因素，我认为最具挑战性的部分可能是伴随癌症诊断而带来的抑郁。我们经常能在媒体上看到癌症的相关报道，因此在调整面对癌症的心态时经常会受到他人遭遇的影响，这也导致了我们会设想见过的最坏情况。

 

许多人对于癌症治疗的认知还停留在以前，不了解现在的治疗方法已经有多很大的进步，在副作用管理等方面也有了很大改进。大多数人对确诊癌症这种事都非常陌生。虽然我们对癌症有所了解，尤其是乳腺癌，但要去接受这些疾病造成的改变会让人不知所措。因为这些改变会渗透到日常生活的方方面面，给本就艰难的情况雪上加霜。另外，一旦确诊后癌症就成为了你日常生活的基础，需要消耗你的很多东西，医生对于疾病的管理主要体现在治疗上，但我们忽视了患者的情感，精神和生活其他方面的需求。因此，患者的需求通常都得不到足够的支持。

 

如何去处理各种需求呢？可能我们不太愿意去寻求帮助，或许是因为我们想要证明自己足够坚强，尤其是作为女性，我们想扮演“女超人”的角色，自信地认为我们能够将一切安排妥当，但与此同时也可能会因此感到崩溃。这是一个非常困难的时期，会有万千情绪袭来，常人难以妥善处理。另外，在面对医生的时候，我们有可能会觉得向医生表达自己入睡困难或者力所不及这种事情难以启齿。但是，我们得意识到寻求帮助并不是软弱的表现，相反，这意味着我们能意识到自己需要帮助，是一种坚强的象征。

 

Oncology Frontier:What are the common psychological problems of breast cancer patients?

 

There are a lot of different things.I think often the most challenging piece perhaps is the depression that can come with a cancer diagnosis，with so much in the media about cancer，we make our decisions about how we’re going to face it based on what we’ve seen.Other people do frequently.And so your mind goes straight to the worst case scenario you’ve seen.And for many people，that may be someone who was treated sometime before so that they maybe aren’t as aware that current treatments maybe aren’t as hard.We have better ways of dealing with side effects and things.But I think it’s terrifying.

 

Most of us when we’re diagnosed with cancer haven’t had personal experience with it before.We know about cancer，breast cancer in particular.But you’re having to adjust to a whole lot of things.Plus，and that’s on top of your regular life.And that’s a lot to process.I think we don’t necessarily provide the support to patients.We see treatment as the very important piece to the doctor who’s going to make sure you get well.But we forget the emotional，the spiritual，just the rest of our lives.

 

How do you cope with all the other demands on your time?And we’re not programmed maybe to ask for help.Because we want to prove we can do it.We’re strong.We’re women.And there’s that tendency to want to be the superwoman because，oh，we can handle this.But on the side，you may be falling apart.And so it’s just a very difficult time because I think you have lots and lots of different emotions.And not quite sure what to do with all of them.You may be afraid to even mention to doctors that I’m having trouble sleeping.Or，you know，I just am not coping well.I want to just keep on going.And that’s not a sign of weakness.And in fact，it’s a sign of strength to recognize that you need that help.

Ginny Mason教授：这在很大程度上取决于患者在哪里接受治疗。一些机构已经将心理社会支持项目整合到其服务中，例如心理医生与癌症中心或支持小组的合作。遗憾的是，有些人忽视了支持小组的价值，认为这只是一个让这些女性患者抱怨她们癌症经历的平台。不过，来自于相同境遇的其他人的经历分享能够让患者卸下防线去表达一些原先不愿表露的情感，将这种不常见的事情转变为共同的经历，能让患者有安全感，不会觉得情感上无可依靠。例如，小组内有人公开讨论他们在睡眠方面的困扰，突然间，你意识到你不是唯一一个在夜间心事满怀，担心未来和孩子处境的人。尽管朋友和家人提供了善意的支持，但他们可能无法理解你的经历。而有相似情况的人则更能够“同病相怜”，即使你们的经历不尽相同。

 

我相信大多数患者会从遭遇类似经历的人那里获得极大的支持。能够接触到社工或者熟悉这一领域、接触过癌症护理的人，他们对患者非常有帮助。这能免除对自身病情解释的必要，因为他们了解你的处境。许多人都面临着朋友难以完全理解他们处境的困扰，尤其是在治疗过程中没有出现脱发的情况，别人可能会觉得你的病情没那么严重。或者当你尝试保持正常的工作和生活节奏，有些人可能把你比作一只水中的鸭子或天鹅，表面上看起来沉着冷静，而在水面之下双蹼狂拍，内心盘算着如何应对眼前的局面。

 

我认为很多患者都发现自己陷入了这种困境。当你感觉到自己并非一人在战斗时，尤其是确诊癌症这种事情上，真的能让人感到宽慰。尽管社交媒体提供了与他人联系的平台，但面对面的互动仍然至关重要。有时，你只需要从正在经历类似事件的人那里得到一个拥抱，你们之间便心有灵犀。

 

Oncology Frontier:How to provide psychological support and comfort for breast cancer patients?

 

A lot depends on where someone’s receiving their treatment.There are some facilities that have built right into their program to provide those kinds of what they call psychosocial supports.That maybe a counselor works with a cancer center or they have support groups.There are a lot of people who will just kind of toss aside a support group thinking，that’s just a bunch of women who are going to complain about having cancer.But there’s incredible power that comes from hearing from someone else who’s experiencing many of the same things that perhaps you are afraid to voice.And it can take something that does not feel very normal and normalize it to find out you’re not the only one who feels that way，that other people feel like that.

 

Someone else might say，you know，I can’t sleep.I’m having real difficulty with this.And you go，oh，I’m not the only one that’s，you know，up walking around in the middle of the night because I’m worried about what’s going to happen.Or how are my children handling this?There’s so many things going on and your friends and your family don’t quite understand what you’re facing.And they can be very helpful，but they don’t see it from the same perspective as someone else who’s facing it.Even if your experiences aren’t identical，that’s not necessary.I think most patients find incredible support from others who are experiencing the same kind of thing.And knowing if you have access to a social worker or someone who knows the field，is used to working with cancer patients.So that you don’t have to explain in great detail that you know that this is the kind of thing they’ve worked with before.I know many people struggle with friends not understanding.Especially if you’re on treatments that you don’t lose your hair.People think，oh，you really can’t be that sick.Or if you’re trying to go to work and you’re trying to keep as much of a normal life as possible.I think some people will say you’re like a duck，that you look very calm.Or a swan on the top，but underneath your feet are going 100 miles an hour trying to cope with what’s going on.And I think many patients find themselves in that position.We have all this social media and things now where you can find people.But sometimes you really need that face-to-face with someone else.And maybe just a hug from someone who is going through something similar.There’s a bond there.

 

Ginny Mason教授：我的建议是越早越好，越多越好。有时候，我们会自认为能够自己处理而推迟寻求帮助。然而，随着时间的推移，事情可能开始失控，此时要重新获得事情的掌控权就变得更加困难。在意识到自己处理不好的时候，不要吝于寻求帮助，比如心理治疗师、支持小组，或者寻求其他有益的支持。

 

对待这些问题时，患者在早期往往比较拖延而选择不去面对。正如我们在一些演讲中听到的那样：医生什么时候会告诉病人所谓“坏消息”的时机很重要。通过早期解决这些问题，常态化处理这些事情很重要。如果医生明确患者目前面临的处境，并表达对患者出现焦虑情绪的理解，询问有关睡眠质量的问题，这能让患者有更好的感受。因为并非每个患者都愿意回答这些问题，所以提出这些问题至关重要。这实际上是医学界应该去做的事情，例如让患者更愿意分享他们的感受，承认目前的状况确实不好。

 

Oncology Frontier:When should a breast cancer patient seek professional counseling or treatment?

 

I would probably say early and often.I think sometimes we wait because we think we can cope.And then things start to fall apart.And then it’s harder to pull things back together.If we go too long before we finally recognize I’m not handling this well.And that you need to seek some assistance，whether it be a therapist，a support group，whatever kind of support that will be most useful.I think there is a tendency not to do that early on，as we’ve heard in some of the talks here:When does a doctor give a patient，quote-unquote，bad news?So if you start to address some of those things early on，they can normalize.If a doctor would say，this could be really scary.And I can see why you might feel anxious.Are you sleeping well?Asking those questions.Because not everyone is going to volunteer it.And it’s important to raise those issues.And that really falls on the medical community to be doing those things.To make it easier for a patient to speak up and say，things are just not going well.

 

Ginny Mason教授：这可能因家庭而异，对患者而言也绝非易事。在某些情况下，家里可能有人不愿面对现实。因此，患者此时得反过来去照顾家属，酌情向家属透露病情。多年来，我遇到过一些选择不向家人透露过多病情细节的患者，因为他们的家人似乎无法妥善处理这些事情。例如，让父母得知将来可能会白发人送黑发人，这对他们来说是一个不小的打击。这也会让家里气氛紧张，患者难以表达真实的感受。患者感觉有必要照顾家人，同时也需要照顾自己，许多女性发现自己陷入了这种照顾角色。

 

此外，患者的朋友们可能也会因此担心，害怕类似的情况也会发生在他们身上。家庭的应对机制各异，这给患者增加了额外的负担，需要他们在其中找到平衡。正如在之前的演讲中提到的，有些家庭则会选择性向患者隐瞒某些信息：我们觉得最好还是不要告诉家属全部真相。但医生认为患者有权知道自己的病情。当出现这种分歧时，患者夹在中间，无所适从。其实，你已经有足够多的事情需要操心了，不需要在为自己的病情担忧的同时还要兼任家庭照顾者的角色。这对患者来说是一个相当沉重的负担。

 

Oncology Frontier:How do family members handle communication with breast cancer patients?

 

That probably is different from family to family.I think that is also difficult for a patient.Because sometimes you have family who don’t want to hear what is actually going on.And so as the patient，you become the caregiver for your family.Because you’re trying to figure out what can they handle，what can’t they handle.I’ve worked with patients over the years who choose not to say much to family.Simply because they don’t seem to cope well with it.Sometimes if you have living parents，they are having a very difficult time realizing they might outlive their child.Even if it’s an adult child.That’s not how it’s supposed to work.And so sometimes that creates a lot of family friction.You don’t want to be able，you can’t say what you really feel.You feel like you have to take care of them and you’re the one that’s needing care as a patient.And I think a lot of women find themselves in that role.And you even have friends who can’t cope with your diagnosis.It’s too scary for them because they see themselves in your experience and go，this isn’t safe.It could happen to this friend.I could be next.And so I think it’s going to be different from family to family，how you cope with that.But that puts an extra burden on the patient to try and figure that out.As we heard in an earlier presentation today，there are families who will tell the doctor，oh，we don’t want mom to know what’s going on.And yet the doctor feels like the patient needs to be aware of what’s happening.And when they don’t agree on those pieces，it puts the patient in the middle.And that’s a difficult place to be.You’re already dealing with enough.You don’t need to play a caregiver to your family members and cope with your diagnosis.It’s enough for you to have to do it on your own.

 

 

Ginny Mason

炎性乳腺癌研究基金会（ibcRF；Inflammatory Breast Cancer Research Foundation）执行董事

ASCO肿瘤护理学会成员

AACR肿瘤护理学会成员