What tests should I get after a Chordoma diagnosis

Tests After a Chordoma Diagnosis

After being diagnosed with chordoma, your oncology team will typically order several important tests to understand your specific tumor and guide treatment planning. Here's what you should generally expect:

Imaging Tests

MRI (Magnetic Resonance Imaging)

• This is the primary imaging tool for chordoma because it shows soft tissue detail very clearly
• Your doctor will use MRI to determine the exact size, location, and extent of your tumor
• MRI helps identify whether the tumor has invaded nearby structures (nerves, blood vessels, bone)

CT (Computed Tomography) Scan

• Often used alongside MRI to get additional detail about bone involvement
• Helps your surgical team plan the approach if surgery is being considered
• Can also check for spread to other areas

PET Scan (Positron Emission Tomography)

• May be ordered to check whether the cancer has spread to distant sites
• Helps establish a baseline for monitoring treatment response over time

Pathology & Molecular Testing

Tumor Tissue Analysis

• Your pathology report should confirm the chordoma diagnosis and grade (how aggressive it appears under the microscope)
• Immunohistochemistry (IHC) staining - specific protein markers that help confirm chordoma diagnosis

Genetic/Molecular Testing

• Testing for specific mutations or biomarkers that might guide treatment options
• This is increasingly important as new targeted therapies are being developed for chordoma

Blood Tests

Baseline Labs

• Complete blood count (CBC) and metabolic panel to establish your baseline health status
• These help your team monitor for side effects during treatment

Functional Assessment

Neurological Exam

• Since chordomas often occur in the spine or skull base, your doctor will assess nerve function
• This establishes a baseline to monitor for any changes

Questions to Ask Your Oncology Team

1. "Which of these tests do you recommend for my specific chordoma, and why?" - Not every patient needs every test; your location and stage matter.

2. "Will you do molecular/genetic testing on my tumor, and if so, what specific mutations or biomarkers are you looking for?" - This is increasingly important for identifying treatment options.

3. "How often will I need follow-up imaging, and what schedule do you recommend?" - Chordomas grow slowly, so imaging schedules vary.

4. "Are there any clinical trials I might be eligible for based on my tumor characteristics?" - This is particularly relevant for chordoma, where newer approaches are being studied.

5. "Can you explain my pathology report in detail, including the grade and any special findings?" - Understanding your specific tumor characteristics helps you engage in treatment decisions.

6. "Will you be sending my tumor tissue for any specialized testing (like at academic centers) that might identify additional treatment options?" - Some institutions offer advanced testing that may not be available locally.

Important Context

Chordoma is a rare tumor, so it's worth asking whether your medical center has specific expertise in treating it. Some patients benefit from getting a second opinion at a center with particular chordoma experience, as treatment approaches can vary significantly.

The specific tests your team recommends will depend on:

• Where your chordoma is located (sacral, spinal, skull base)
• Whether it's a new diagnosis or recurrent
• Your overall health status
• Available treatment options being considered

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.