Neuroendocrine Tumors – Diagnosis and Treatment
Diagnosis
Doctors diagnose neuroendocrine tumors (NETs) and neuroendocrine carcinomas through a mix of exams, imaging, lab tests, and biopsies.
They aim to find the tumor’s location, determine if it is well differentiated or poorly differentiated, and check if the cancer has spread.
Initial steps may include a physical exam and review of symptoms such as flushing, diarrhea, or unexplained weight loss. Blood and urine tests can measure hormone levels or detect markers like chromogranin A, which may be elevated in some NETs.
Imaging tests play a key role in locating tumors and assessing their size and spread. These may include CT scans, MRI, and functional imaging such as PET scans using radiotracers designed to highlight neuroendocrine cells.
A biopsy confirms the diagnosis and helps identify the tumor grade. Tissue samples are analyzed under a microscope to check how abnormal the cells look and how quickly they are dividing.
This helps classify the tumor as low, intermediate, or high grade.
In some cases, endoscopic procedures or specialized nuclear medicine scans, such as somatostatin receptor scintigraphy, may be used to detect tumors in the digestive tract or other internal organs.
Treatment
Doctors personalize care for neuroendocrine tumors (NETs) based on the tumor’s type, position in the body, and how much it affects hormone levels. They often suggest several options to manage or shrink the cancer and address its symptoms.
Treatment Options:
Surgical Removal: Surgeons remove the tumor and some healthy tissue around it, if possible. Even if they cannot remove the entire tumor, reducing its size can still help.
Chemotherapy: Doctors use drugs to kill cancer cells, given through an IV or as pills. They may recommend chemotherapy if the tumor could return after surgery or for tumors that have spread and are difficult to operate on.
Targeted Therapies: Doctors prescribe drugs that focus on unusual features in cancer cells. These medications interrupt those features to help stop cancer growth. They may use targeted therapies alone or with chemotherapy, especially in advanced NETs.
Peptide Receptor Radionuclide Therapy (PRRT): Delivers targeted radiation to cancer cells by attaching a radioactive substance to a compound that binds to receptors commonly found on neuroendocrine tumor (NET) cells. This treatment is used for patients with NETs that have spread and cannot be removed surgically. PRRT helps limit damage to healthy tissue while concentrating radiation in tumor areas.
Hormone-Controlling Medicines: Doctors prescribe medicines to manage symptoms if the tumor causes too much hormone production. These drugs can reduce problems like diarrhea or skin flushing.
Radiation Therapy: Doctors use strong beams, like X-rays, to kill cancer cells. They may recommend radiation when surgery cannot be done or if the tumor does not respond to other treatments.
Side Effects of Treatment:
| Treatment | Common Side Effects |
|---|---|
| Surgery | Pain, infection, fatigue |
| Chemotherapy | Nausea, weakness, hair loss |
| Targeted Therapy | Skin problems, high blood pressure |
| PRRT | Nausea, reduced blood counts |
| Radiation Therapy | Skin changes, tiredness |
| Hormone Medications | Stomach upset, changes in blood sugar |
The care team discusses each patient’s treatment plan to match the best options to their needs. Standards of care may include a mix of these treatments to provide the most benefit.
Finding Ways to Manage and Get Support
People facing neuroendocrine tumors may feel anxious or worried about what comes next. Supportive care can make a big difference by helping address emotional needs and improving quality of life.
Talking to doctors and learning about the diagnosis and care choices allows patients to feel more in control. Many find it helpful to talk with family and friends.
Sharing feelings and experiences creates a support system that can offer both comfort and help with daily needs. Sometimes, family members can also join visits to the doctor for extra support.
Ways to seek support include:
- Asking questions during appointments.
- Bringing someone with you to important meetings.
- Finding a support group, either online or in person.
- Reaching out to trusted friends or relatives for help.
| Support Type | Benefit |
|---|---|
| Family & Friends | Emotional and practical aid |
| Support Groups | Shared experiences, advice |
| Palliative Care | Relief from symptoms, comfort |
| Health Providers | Information, treatment choices |
Using supportive or palliative care can help with symptoms, manage side effects, and keep life as comfortable as possible.
Combining these approaches helps many people feel less alone and better prepared to handle the challenges of living with a neuroendocrine tumor.
Getting Ready for Your Medical Visit
Steps You Can Take Ahead of Time
Taking the right steps before a medical visit helps make the most of the appointment.
Patients might see a family doctor first and may be referred to specialists such as a surgeon, endocrinologist, medical oncologist, radiation oncologist, or gastroenterologist, depending on their symptoms and diagnosis.
Table: Ways to Prepare for Your Visit
| Step | Details |
|---|---|
| Confirm pre-visit rules | Ask if you need to follow any instructions before your appointment, like fasting. |
| Record your symptoms | List all symptoms, even ones not related to the main concern. |
| Note important personal information | Include life changes or stressful events. |
| Bring a current medication list | Write down all drugs, vitamins, and supplements. |
| Bring a support person | A family member or friend can help remember questions and answers. |
| Prepare questions | List your questions, starting with the most urgent. |
Example questions to ask during the visit:
- What kind of neuroendocrine tumor do I have?
- Can you explain my test results?
- What other tests should I consider?
- What treatment choices are best for my case?
- What are the side effects of each treatment?
- How will treatment affect daily living?
- Should I think about getting another opinion? Will insurance help with this?
Tip: Writing down questions and bringing them to the appointment can help if there is limited time.
How Your Doctor Might Guide the Visit
Doctors and specialists usually ask important questions to learn more about the patient’s health and symptoms. Preparing clear answers will help the appointment run smoothly and address key issues.
Doctors may ask:
- When did your symptoms start?
- Are your symptoms constant or do they come and go?
- How bad are your symptoms?
- Is there anything that makes symptoms better or worse?
What to Expect from Each Specialist
- Surgeon: May discuss surgery options and review how symptoms affect surgery plans.
- Endocrinologist: Might focus on hormone levels and their relationship to symptoms.
- Medical oncologist: Can explain test results and outline medication therapies.
- Radiation oncologist: May ask about past treatments and current health for planning radiation.
- Gastroenterologist: Will usually ask about digestive symptoms and related issues.
If you bring written notes and prepare to answer these questions, each expert can offer useful advice.
