诊断
开始诊断时，通常先来查看病史、讨论体征与症状。用于诊断髓母细胞瘤的检查和程序包括：
- 神经系统检查。检查过程中，会测试您的视力、听力、平衡、协调和反应能力。这有助于确定大脑的哪个部分可能受到肿瘤的影响。
- 影像学检查。影像学检查可捕获大脑图像。图像可显示出肿瘤的大小及位置。这类检查还可显示脑脊液压力或阻塞情况。CT 和 MRI 都可成像，但某些情况下还可能需要其他检查。
- 组织样本检测。活检是一种取出肿瘤样本并进行检查的医疗程序。髓母细胞瘤活检并不常见，但在某些情况下可能会用到。活检过程中会去除部分颅骨，并用针头抽取肿瘤样本。样本送至实验室检测，看是否为髓母细胞瘤。
- 采集脑脊液用于检测。这种医疗程序也称为腰椎穿刺，需要在下脊柱的两块骨头之间插入针头。针头从脊髓周围抽取脑脊液。将脑脊液送至实验室，检测有无肿瘤细胞。此项检查只有在控制脑部压力或切除肿瘤后才能完成。
治疗
治疗髓母细胞瘤的方法通常包括手术，并在术后进行放疗或化疗，或两者结合。医护团队在制定治疗计划时会考虑很多因素。其中可能包括肿瘤的位置、生长速度、是否已经扩散到大脑的其他部位，以及对肿瘤细胞的检测结果。医护团队还会考虑您的年龄和整体健康状况。
治疗方案包括：
- 缓解脑部积液的外科手术。髓母细胞瘤增大后可能阻碍脑脊液的流动。这会导致液体积聚，对大脑造成压力。为降低压力，外科医生会建立一个使液体流出大脑的通道。这种手术有时会联合外科手术来切除肿瘤。
- 手术切除髓母细胞瘤。手术的目标是完全切除髓母细胞瘤。但有时无法完全切除肿瘤，因为肿瘤形成于大脑深处的关键结构。大多数髓母细胞瘤患者在手术后需要接受更多治疗，来杀死任何残留的癌细胞。
- 放射疗法。放射疗法利用强大的能量束来杀死癌细胞。能量可能来自 X 线、质子和其他来源。在放射疗法过程中，一台机器将能量束照向患者身体的特定位置。放射疗法通常在外科手术后进行。
- 化疗。化疗使用药物杀死癌细胞。患有髓母细胞瘤的儿童和成人一般通过静脉注射接受用药。有时会在放射疗法后进行化疗。有时化疗会与放疗同时进行。
- 临床试验。临床试验招募符合条件的参与者来研究新治疗方法或现有治疗方法的新方式，比如放疗和化疗的不同组合方式或不同使用时机。通过这些研究，患者有机会尝试最新疗法，但副作用风险可能还不清楚。请咨询医务人员的意见。
准备您的预约
Make an appointment with a doctor or other healthcare professional if you have any symptoms that worry you.
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 or supplements you're taking and the doses.
- Take a family member or friend along. Sometimes it can be very 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 medulloblastoma, some basic questions to ask include:
- Do I have a medulloblastoma?
- Will I need more tests?
- Can my medulloblastoma be removed?
- Why do I need additional treatments if surgery removes the entire medulloblastoma?
- What are the treatment options?
- What is the stage of my medulloblastoma?
- Has my medulloblastoma spread to other parts of my body?
- 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?
- Will I need to continue coming back?
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?