脊髓肿瘤

诊断

用于诊断脊索瘤的检查和程序包括：

• 取出细胞样本进行化验（活检）。活检是一种取出可疑细胞样本进行化验的程序。在实验室中，接受过专门培训的医生（如病理科医生）会在显微镜下检查这些细胞，以确定是否存在癌细胞。

  在确定应当如何进行活检时，医疗团队需要仔细制定计划。医生需要采取一种不会干扰未来癌症切除手术的方式进行活检。因此，请让医生将您转诊给一个在治疗脊索瘤方面拥有丰富经验的专家团队。

• 接受更详细的影像学检查。医生可能会建议您接受影像学检查，以帮助使脊索瘤可视化，并确定其是否已扩散至脊柱或颅底以外。检查可能包括 MRI 或 CT 扫描。

当确诊您患有脊索瘤之后，医生可能咨询耳鼻喉医学（耳鼻喉科）、癌症（肿瘤科）和放射疗法（放射肿瘤科）或手术科的专家，以针对您的需求制定一个治疗计划。根据需要，您的医护团队还可能会包括内分泌科、眼科和康复治疗科的专家。

Imaging tests

Imaging tests make pictures of the body. They can show the size and location of a cancer. For chordoma, imaging tests might include CT scans and MRIs.

Biopsy

A biopsy is a procedure to remove a sample of tissue for testing in a lab. The sample is tested to see if it is cancer. Other tests give more details about the cancer cells. Your healthcare team uses this information to make a treatment plan.

Deciding how the biopsy should be performed requires careful planning by your healthcare team. Your care team needs to perform the biopsy in a way that won't cause problems with future surgery to remove the cancer. For this reason, it's a good idea to seek care at a medical center that sees many people with chordoma.

治疗

脊索瘤治疗取决于癌大小和位置以及是否入侵了神经或其他组织。可选择的治疗方法可能包括手术、放射疗法、放射外科治疗和靶向治疗。

治疗骶椎脊索瘤

如果脊索瘤侵袭脊柱下半部分（骶骨），则治疗选项可能包括：

• 手术。骶椎癌手术的目的是切除全部癌及其周边健康组织的一部分。手术可能难以实施，因为该癌靠近关键结构如神经和血管。当不能完全切除癌时，外科医生可能尝试尽可能多切除。

• 放射疗法。放射疗法使用高能束（例如，X 线或质子）杀伤癌细胞。在放射疗法期间，您躺在治疗台上，同时一台机器围绕您移动，指引射束至身体上的精准部位。

  放射疗法可以术前用来缩小癌并使之更易切除。也可术后用来杀伤残留的任何癌细胞。如果未选择手术，则可以推荐放射疗法代之。

  采用更新类型放射治疗（如质子疗法）治疗允许医生更高剂量的照射，同时保护健康组织，这可以更有效地治疗脊索瘤。

• 放射手术。立体定向放射治疗使用多射束在极小区域内杀伤癌细胞。每个射束并不非常强，但所有射束汇聚之处（脊索瘤所在处）接收庞大剂量的照射，从而杀伤癌细胞。放射手术可以术前或者术后用于脊索瘤。如果未选择手术，则可以推荐放射手术代之。
• 靶向治疗。靶向治疗采用聚焦于特定异常的药物，这些特定异常存在于癌细胞内部。通过攻击这些异常，靶向药物治疗可以引起癌细胞死亡。靶向治疗有时用于治疗扩散到身体其他区域的脊索瘤。

颅骨脊索瘤的治疗

如果脊索瘤影响脊柱与颅骨（颅底）连接的区域，治疗方案可能包括：

• 外科手术。通常先采用手术治疗，以在不损害周围健康组织或引起新问题（如脑或脊髓损伤）的情况下，尽可能多的切除癌瘤。如果癌瘤靠近重要结构，如颈动脉，则可能无法完全清除。

  在某些情况下，外科医生可能使用特殊的技术（如内镜手术）来抵达癌变部位。内镜颅底手术是一种微创技术，需要使用一根经鼻插入的细长管（内镜）以抵达癌瘤。可将专用外科工具穿过细管以抵达并切除癌瘤。

  极少数情况下，外科医生会建议再做一次手术，以切除尽可能多的肿瘤或稳定曾经患有肿瘤的区域。

• 放射疗法。放射疗法利用 X 射线或质子等高能量束来杀死癌细胞。颅骨脊索瘤手术后通常建议进行放射治疗，旨在杀死任何可能残留的癌细胞。如果不考虑手术，建议采用放射疗法作为替代疗法。

  放射疗法技术，一种更精确地靶向治疗法，允许医生使用更高的放射剂量，这对于治疗脊索瘤可能更有效。其中包括质子疗法和立体定向放射治疗。

• 新疗法。临床试验正在研究治疗颅骨脊索瘤的新方法，包括靶向脊索瘤细胞特定弱点的新治疗方法。如果您对尝试这些最新治疗方法有兴趣，请与医生探讨您的选择。

妥善处理与支持

With time, you'll find what helps you cope with the uncertainty and worry of a cancer diagnosis. Until then, you may find it helps to:

Learn enough about chordomas to make decisions about your care

Ask your healthcare team about your cancer, including your test results, treatment options and, if you want, your prognosis. As you learn more about your chordoma, you may become more confident in making treatment decisions.

Keep friends and family close

Keeping your close relationships strong can help you deal with a chordoma. Friends and family can provide the practical support you may need, such as helping take care of your home if you're in the hospital. And they can serve as emotional support when you feel overwhelmed by having cancer.

Find someone to talk with

Find someone who is willing to listen to you talk about your hopes and worries. This may be a friend or family member. The concern and understanding of a counselor, medical social worker, clergy member or cancer support group also may be helpful.

Ask your healthcare team about support groups in your area. Other sources of information include the National Cancer Institute and the American Cancer Society.

准备您的预约

Make an appointment with a doctor or other healthcare professional if you have any symptoms that worry you. If your healthcare professional thinks you might have a chordoma, you may be referred to a specialist.

Because appointments can be brief, it's a good idea to be prepared. Here's some information to help you get ready.

What you can do

• Be aware of anything you need to do ahead of time. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
• Write down symptoms you have, including any that may not seem related to the reason for which you scheduled the appointment.
• Write down important personal information, including major stresses or recent life changes.
• Make a list of all medicines, vitamins and supplements you're taking and the doses.
• Take a family member or friend along. It can be hard to remember all the information provided during an appointment. Someone who goes with you may remember something that you missed or forgot.
• Write down questions to ask your healthcare team.

Your time with your healthcare team is limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For chordoma, some basic questions to ask include:

• Do I have a chordoma?
• What is the stage of my chordoma?
• Has my chordoma spread to other parts of my body?
• Will I need more tests?
• What are the treatment options?
• How much does each treatment increase my chances of a cure or prolong my life?
• What are the potential side effects of each treatment?
• How will each treatment affect my daily life?
• Is there one treatment option you believe is the best?
• What would you recommend to a friend or family member in my situation?
• Should I see a specialist?
• Are there any brochures or other printed material that I can take with me? What websites do you recommend?
• What will determine whether I should plan for a follow-up visit?

Don't hesitate to ask other questions.

What to expect from your doctor

Be prepared to answer questions, such as:

• When did your symptoms begin?
• Have your symptoms been continuous or occasional?
• How severe are your symptoms?
• What, if anything, seems to improve your symptoms?
• What, if anything, appears to worsen your symptoms?

Living with 脊髓肿瘤?

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