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.
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.