How do I find a Neuroendocrine Tumors specialist vs a general oncologist

Finding a Neuroendocrine Tumor Specialist

This is an excellent question—and it's one that many NET patients face. The good news is that specialized care can make a real difference in your treatment outcomes.

Why Specialist Care Matters for NETs

According to the NCCN Guidelines for Neuroendocrine Tumors, treatment approaches vary significantly based on tumor location, grade, and stage. A general oncologist may not be as familiar with the nuances of NET management, including:

• Somatostatin analog therapy (octreotide LAR or lanreotide) for symptom and tumor control
• SSTR-PET imaging (68Ga-DOTATATE PET/CT scans) which are specialized imaging tools specifically designed to detect NETs
• Functional vs. non-functional tumor management (some NETs produce hormones that cause specific symptoms)
• Locoregional therapies like liver-directed treatments for metastatic disease

As one patient shared in the CancerPatientLab webinar series, having a specialized team made a significant difference: "I have teams of people looking at that" when discussing his NET care at a major cancer center.

How to Find a NET Specialist

1. Start with NET-Focused Organizations

• Neuroendocrine Tumor Research Foundation (NETRF) - They maintain lists of specialists and support communities
• North American Neuroendocrine Tumor Society (NANETS) - Offers provider directories
• Pancreatic Cancer Action Network (PanCAN) - If your NET is pancreatic, they have specialist networks

2. Look for NCCN-Designated Cancer Centers

According to the NCCN Guidelines, comprehensive cancer centers typically have multidisciplinary teams experienced with NETs. These centers often have:

• Dedicated NET tumor boards
• Access to specialized imaging (SSTR-PET/CT)
• Experience with both medical and surgical management

3. Ask Specific Questions

When evaluating an oncologist, ask:

• "How many NET patients do you treat per year?"
• "Do you have access to SSTR-PET imaging?"
• "Can you order octreotide LAR or lanreotide if needed?"
• "Do you work with a multidisciplinary team (surgery, radiology, pathology)?"
• "Are you familiar with both functional and non-functional NETs?"

4. Consider Telemedicine Consultations

If you don't have a NET specialist nearby, many major cancer centers offer second opinion consultations via telemedicine. This can help you:

• Get specialist input on your specific case
• Understand treatment options
• Potentially coordinate care with your local oncologist

5. Seek Centers with NET Expertise

Look for institutions known for NET research and treatment, such as:

• Major academic medical centers with dedicated NET programs
• Centers that participate in NET clinical trials
• Institutions with published NET research

What a Specialist Can Offer

A NET specialist typically provides:

• Accurate grading and staging using current pathology standards
• Biomarker testing (chromogranin A, specific hormone levels)
• Appropriate imaging protocols (SSTR-PET/CT is superior to standard PET for most NETs)
• Personalized treatment plans based on tumor biology
• Access to clinical trials for newer therapies

Red Flags: When to Seek a Second Opinion

Consider getting a specialist consultation if:

• Your oncologist is unfamiliar with somatostatin analogs
• They haven't ordered SSTR-PET imaging for staging
• They're treating your NET like a standard adenocarcinoma
• You're not seeing improvement on current treatment
• Your tumor grade or stage seems unclear

Real-World Example

In the CancerPatientLab webinars, patient Burt Rosen described his approach: "I started to go to every support group I could find, and read everything I could find...it was a great way for me to learn as much as I could about my condition and people who went through it." He eventually connected with specialists at OHSU (Oregon Health & Science University) who had NET expertise.

Next Steps

1. Contact NETRF or NANETS for specialist referrals in your area
2. Ask your current oncologist for a referral to a NET specialist
3. Request your pathology report to confirm your NET diagnosis and grade
4. Prepare a list of questions about their NET experience
5. Don't hesitate to seek a second opinion—this is standard practice in cancer care

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