mNeuroendrocrine Cancer RoadMap – Say YES to HOPE

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Home
About Us
Advanced Cancer
- Cancer Type
  - Bladder
  - Brain
  - Breast
  - Cervical
  - Colorectal
  - Esophageal
  - GIST
  - Liver
  - Lung
  - Melanoma
  - Neuroendocrine
  - Ovarian
  - Pancreatic
  - Prostate
  - Renal Cell
- If Cancer Spreads
Support

Metastatic Neuroendocrine Tumor (NET) Roadmap

Understanding your diagnosis, tumor biology, and treatment history can help guide conversations with your care team and help you explore available options.

1. Diagnosis & Cancer History

What type of neuroendocrine tumor were you diagnosed with? Where did the tumor begin? When was metastatic or advanced disease diagnosed? Was the original tumor removed surgically? Were lymph nodes involved?

2. Tumor Biology & Biomarkers

What tumor grade was reported? What was the Ki-67 proliferation index? Has somatostatin receptor imaging been performed?

DOTATATE PET scan Octreotide scan Other receptor imaging No receptor imaging Not sure

Has your tumor been tested for any of the following biomarkers?

Chromogranin A 5-HIAA level Serotonin level Gastrin Insulin Glucagon VIP Somatostatin MEN1 mutation DAXX / ATRX mutation Other genomic mutation identified No mutations identified Not sure

Has comprehensive genomic testing been performed?

3. Where Has the Cancer Spread?

Select all areas identified.

Liver Lymph nodes Lung Bone Peritoneum (abdominal lining) Brain Adrenal glands Skin Heart Other organs Not sure

Liver Metastases

How many tumors are in the liver? Have treatments aimed specifically at liver tumors been discussed?

Surgery Liver-directed therapy Focused radiation therapy Medication treatment only Not sure

Bone Metastases

How many areas of bone are affected? Treatments discussed?

Radiation therapy Bone-strengthening medications Surgery to stabilize bone Medication treatment only Not sure

Lung Metastases

How many tumors are present?

Brain Metastases

Has cancer spread to the brain? Treatments discussed?

Surgery Stereotactic radiosurgery Whole brain radiation Medication treatment only Not sure

4. Functional vs Non-Functional Tumor Pathway

Some neuroendocrine tumors produce hormones that cause symptoms.

Has your tumor been described as hormone-producing? Symptoms that may be related to hormone production

Flushing Diarrhea Wheezing Rapid heart rate Abdominal cramping Low blood sugar Severe stomach ulcers Skin rash None of these

Have doctors mentioned any of the following syndromes?

Carcinoid syndrome Insulinoma Gastrinoma VIPoma Glucagonoma Other hormone-producing tumor Not sure

5. Treatment Goals & Planning

What has your care team described as the primary goal of treatment? Have doctors discussed treatments aimed directly at tumors?

Examples may include:
• surgery
• liver-directed therapies
• focused radiation therapy

How will doctors evaluate whether treatment is working?

CT scans MRI scans PET scans Hormone or tumor marker blood tests Symptom improvement Not sure

6. Prior Systemic Treatments

Somatostatin Analog Therapy

Octreotide (Sandostatin) Lanreotide (Somatuline) Other somatostatin therapy Not sure

Targeted Therapy

Everolimus (Afinitor) Sunitinib (Sutent) Other targeted therapy Not sure

Peptide Receptor Radionuclide Therapy (PRRT)

Lutetium-177 DOTATATE (Lutathera) Other radionuclide therapy Not sure

Chemotherapy

Temozolomide-based therapy Capecitabine-based therapy Platinum-based chemotherapy Other chemotherapy Not sure

Clinical trials Current treatment

Somatostatin therapy Targeted therapy PRRT Chemotherapy Clinical trial Not currently receiving treatment Not sure

7. Prior Local Treatments

Surgery

Primary tumor removal Surgery to remove metastatic tumors Liver surgery No surgery

Liver-Directed Treatments

Transarterial chemoembolization (TACE) Transarterial radioembolization (Y-90) Hepatic artery infusion therapy Other liver-directed therapy Not sure

Ablation

Radiofrequency ablation (RFA) Microwave ablation Cryoablation Not sure

Radiation

Radiation to metastatic tumors Focused radiation therapy (SBRT) Other radiation therapy None

8. Your Health, Priorities & Questions

How are you feeling in daily life? Symptoms you would like help managing

Flushing Diarrhea Abdominal pain Fatigue Weight loss Shortness of breath Other symptoms None currently

What matters most to you right now? Are you interested in clinical trial options?

ZIP code How far are you willing to travel?

Anything else you want your care team to know? Questions you want included in the roadmap

About You (Optional)

You can skip this section. It helps us understand who is using this tool in aggregate.

Age Range Race / Ethnicity

Generate Physician Discussion Summary

When ready, generate a formatted report that can be printed or saved as a PDF.

Cancer Roadmap

Physician Discussion Summary

For Informational Purposes Only – Not Medical Advice

The information provided by this tool is intended for educational and informational purposes only. This tool does not provide medical advice, professional diagnosis, opinion, or treatment to you or any other individual.

Consult Your Physician: This information is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
No Doctor-Patient Relationship: Your use of this tool does not create a doctor-patient relationship between you and “Say YES to Hope” or any associated clinical partners.
Emergency Situations: Never disregard professional medical advice or delay in seeking it because of something you have read in this roadmap. If you think you may have a medical emergency, call your doctor or emergency services immediately.
Accuracy of Information: We strive to use the latest resources for our information but medical knowledge is constantly evolving. “Say YES to Hope” does not guarantee the accuracy, completeness, or timeliness of the information generated.

The information presented in this Website is not intended as a substitute for medical care. Please talk with your healthcare provider about any information you get from this Website.

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