Neuroendocrine Tumors First Appointment
Your first appointment at Fred Hutchinson Cancer Center is a time for you and your medical oncologist to meet. You might meet an advanced practice provider too. You talk about your diagnosis, type of neuroendocrine tumor (NET), disease stage and grade and treatment options. This visit is also a time for us to start getting to know you personally. This helps us tailor our recommendations to you.
Some of our new patients deal with symptoms of NETs for quite a while before getting an accurate diagnosis. We understand you may have been on a long path to get here. Our goal is to give you the clearest answers we can about your health, any tests you may need and your possible care. Together, you and your care team decide what needs to happen next.
We encourage you to bring a family member or friend to your first appointment (and any future visits).
What to Expect
First appointments usually last about one hour. Here is what you can expect to happen.
Confirming Your Diagnosis
Most of our new patients have already had a biopsy that shows they have a NET. To confirm these results, a Fred Hutch pathologist reviews your pathology slides. They use their expertise in NETs to precisely diagnose your disease.
Knowing the differentiation and grade is important. It helps your physician determine which treatments will likely work best for you and when your treatment should start. Our pathologists may run additional tests on your tissue samples to confirm your diagnosis or get more details. At your first appointment, your physician will have your results and be ready to go over them with you.
Staging Your Disease
Some patients who were diagnosed with a NET before coming to Fred Hutch have had tests to stage their disease (for example, scans to check the extent of the disease in their body). Some have not.
If you have had these tests and been told your stage already, we review the test results before your appointment. Then, we can explain what your stage means for your treatment. If you have not had the tests, we talk with you about which tests you need, why, how to get them and when to expect results.
Discussing Your Treatment
The treatment we recommend for you depends in large part on the type of NET you have and the grade. If you have had a biopsy, we have these details. Your physician explains which treatments we recommend. If you need a biopsy (or other tests), we meet with you again after the results are back. Then, we can discuss your personalized treatment in detail.
These appointments are also a time for you to tell us about yourself. Each patient and family have their own needs and preferences. We want to get to know you so we understand the best way to care for you.
Answering Your Questions
Throughout your first appointment (and after), we are here to answer your questions. We want to help you understand as much as you wish to about your disease, your treatment and how care happens at Fred Hutch. We invite you to bring a friend or family member with you to help keep track of your questions and the information that your team gives you.
Before you leave, we make sure you know what is going to happen next and how you can reach us if you have questions later. We figure out the timing of your next visit.
If you are likely to need surgery or radiation therapy, you might also see a surgeon or radiation therapist at your first visit or soon after. We try to group your visits on the same day when we can to make care easier for you.
Staging NETs
Staging means finding out how far cancer has spread in your body. Accurate staging helps your physicians predict which treatments are most likely to control your disease or put it into remission. There are two main systems for staging NETs: TNM staging and overall stage grouping.
TNM Staging
TNM stands for tumor, nodes and metastasis. Your TNM stage is:
- The letter T with a number from 0 to 4. A higher T number means your main tumor is larger, has spread more widely into nearby tissues or both.
- The letter N with a number from 0 to 3. A higher N number means greater spread of cancer cells to lymph nodes.
- The letter M with a 0 or 1. M0 means physicians did not find cancer in other organs outside of your main tumor. M1 means spread to other organs was found.
Overall Stage Grouping
After your physician finds your TNM stage, they will assign a stage using Roman numerals I (one), II (two), III (three) and IV (four). Stage I is the least advanced. Stage IV is the most advanced. Your physician will explain your stage and what it means.
Staging Tests
To stage your NET, you likely need one or more of these imaging tests:
- Ultrasound
- X-ray
- CT (computed tomography) scan
- MRI (magnetic resonance imaging)
- PET (positron emission tomography) scan or PET-CT scan
PET scans use radiotracers — compounds put in your blood through an intravenous (IV) line to help your team see where NETs are in your body. Common options for NETs are a gallium-68 dotatate scan or a fluorodeoxyglucose (FDG) PET scan. Your physician decides which scans you need based on the features of your NET.
Your physician recommends other tests based on the type of NET you have and your signs and symptoms. For example, if you have a NET that affects the digestive tract, you may need an endoscopy.
Resources for Patients and Caregivers
Here are tips about how to prepare for your first appointment at Fred Hutch and what to bring.
Just like every patient’s situation is different, every caregiver may be asked to help with different tasks.
Caregiving at the First Appointment
As a caregiver, you can give your loved one both emotional and practical support for their first appointment. Ask them if you can help with things like these:
- Helping them manage their stress, worry or other feelings.
- Planning how to get to and from the appointment, what time to leave home and where to park.
- Making a list of questions they want to ask the physician. Fred Hutch’s Guide to Your Care has a list of questions they may want to ask the care team. At the appointment, make sure that all their questions get answered.
- Taking notes during the visit. The physician will be giving a lot of details, which can be hard to remember later without notes.