Neuroendocrine Tumors, NET

Neuroendocrine tumors are cancerous tumors that may be present in the gastrointestinal tract or in the lungs. Many people who get a neuroendocrine tumor get rid of it, or can live a good life long despite the disease. Most people who get neuroendocrine tumors are about 60 years old. The disease is unusual.

Neuroendocrine tumors are abbreviated NET. They are sometimes called carcinoids. 

What are neuroendocrine tumors, NET?

A neuroendocrine tumor, NET, is formed by cells that produce hormones but have been altered to become cancer cells. An NET can continue to produce hormones or hormone-like substances, albeit in a way that causes the problems described in the chapter on symptoms.

Neuroendocrine tumors can be formed in the entire gastrointestinal tract or in the lungs, but are most common in the small intestine. You can read more in the text about small bowel cancer.

It is unclear what causes the disease.

Symptoms of Neuroendocrine Tumor

What symptoms of NET you may have depended on where the neuroendocrine tumor is located.

In the small intestine, a NET can cause the face to redden. The redness comes suddenly if you eat heavily spiced food, drink alcohol or stress. You may also have stomach cramps, diarrhea or bowel cramps.

In the large intestine or rectum, a NET can do so that you get blood in the stool.

In the lungs, a NET can cause you to get redness and become swollen on the face and neck.

In the stomach, a NET usually gives no symptoms at all but is usually detected in the stomach is examined for some other reason.

When and where should I seek care?

If you think you have NET, contact a healthcare provider. You can contact many receptions by logging in.

If it’s in a hurry

If you experience a stomach ache, contact a health care center or an on-call clinic immediately. If closed, seek care at an emergency room.

Investigations

The doctor will do an investigation to find out if you have NET. Then you may need to be examined in different ways. You need to investigate more if you have NET. This is for the doctor to find out as much as possible about the cancerous tumor.

Blood and urine tests

You are allowed to submit blood tests and urine tests. The tests can show if the hormones in the body differ in any way.

Studies that can find and map the disease

One or more studies are needed to see if there is any tumor and whether it has spread. The doctor may want to do an ultrasound examination,  computer tomography,  magnetic camera examination or a  PET examination.

Sometimes a scintigraphy examination is done. Then you get a syringe in the blood with a radiolabelled substance. If you have cancer, the subjects are looking for them. It is visible when you are examined in a gamma camera.

Tissue tests to find out more about the disease

Sometimes a tissue sample is needed that can provide more information about a suspected tumor. The tissue sample is also called a biopsy. It is taken with a needle that the doctor inserts into the tumor, often with the help of ultrasound or computed tomography to guide the needle correctly.

It can feel uncomfortable but usually doesn’t hurt. You usually get local anesthesia. Sampling takes about one minute and the entire survey takes a total of five to ten minutes.

Treatment for Neuroendocrine Tumors

Surgery is the most common treatment for neuroendocrine tumors if you have the disease. You are anesthetized during the operation done through a cut or with a puncture surgery also called laparoscopy.

The surgeon removes as much of the cancer tumor as possible. It can be removed completely if it only grows in a confined space. Then you do not need more treatment.

After the surgery

It is common to have to stay in the hospital from a few days to a week after the operation. It depends on how you feel. 

Good to quit smoking before surgery

You who smoke have much to gain from quitting. You reduce the risk of complications after surgery and recover faster.

Stop smoking completely, if you can. Otherwise, pause. You can get help to quit smoking if you need to. Here you can read more about quitting smoking before an operation.

Pregnancy and breastfeeding

The treatment for cancer can be harmful to a fetus. Therefore, you should wait until you are finished if you are planning to become pregnant or to use your sperm in a pregnancy.

Talk to your doctor before getting cancer treatment. Read more in the text Fertility after cancer treatment.

If you are already pregnant

Tell your doctor if you are pregnant when you have cancer. Sometimes it is possible to get a treatment that does not harm the fetus. 

Talk to your doctor if you want to breastfeed. 

After Controls

Post-checks are doctor visits and examinations that may be needed after you have finished treatment for neuroendocrine tumors. It is to see how you are feeling and to check that the cancer is not coming back. The number of post-checks required varies. It depends on what treatment you have received.

If the disease comes back

It is different from what treatment can be given if cancer comes back. It depends on how the cancer tumor behaves and where it sits.

If the disease is not removable

Sometimes it is not possible to operate a NET. Then you can’t get rid of it. However, a NET grows slowly and can therefore usually be withheld for a long time by means of different treatment methods.

The drug interferon strengthens the immune system and slows down the cancer cells so that they do not continue to grow.

It is also common to receive medicines with hormones that reduce the symptoms of neuroendocrine tumors. One such drug is somatostatin. It prevents the cancerous tumor from secreting other hormones that can cause, for example, diarrhea, rashes, and flushes.

The drugs can slow down and relieve the disease so you can live about as usual for many years.

Flush is a powerful redness and warmth. It is most common on the face or upper body.

Getting a cancer message

There are many ways to respond to a cancer message. You may need plenty of time to talk to your doctor and other healthcare professionals about what the message means.

If possible, please let a relative accompany you. The related person can act as a support and help to remember what has been said.

You have the right to understand

You can ask to have the information written down so you can read it peacefully. Ask questions if you don’t understand. You have the right to receive interpreting assistance if you have a hearing impairment.

In many hospitals, there are special nurses called contact nurses who can provide support and also help with various practical things.

For many, it usually feels easier when treatment has begun and they know what is going to happen.

You can get support in several places

The contact nurse or the hospital’s curator can help you if you need to talk more or have questions.

You can contact Cancer Counseling, the Cancer Foundation or, for example, a patient association. Carpa NET is a patient compound for people with a hormone-producing tumor and for relatives.

Children also need to know

A minor child has the right to receive information and support based on his or her own needs if a relative is ill. It is the responsibility of care. If you want to tell the child yourself, you can get help with what you have to say.

Often it is good to make children as involved as possible, regardless of age. That doesn’t mean you have to tell everything.

You can read more in the text Talking to children when a parent is seriously ill.

How is life affected?

How life is affected after treatment with NET depends entirely on how you are feeling and what kind of treatment you have received. 

It is common to feel very tired during treatment and even afterward. Fatigue is called fatigue.

Use energy to do things you like and feel important to you.

Rest when you need to, but only for a short while each time. Otherwise, you may feel even more tired.

Touch yourself as much as you can.

Life can feel painful periodically, but usually, it gets better. Sometimes it takes time. Some feel vulnerable and worried long after treatment is over.

Be involved and influence your care

You have the right to be involved in your care whenever possible. The healthcare staff should tell you what treatment options are available. They should make sure you understand what the different options mean, what side effects are available and where you can get treatment. This way you can help decide which treatment is right for you.

You decide on the care plan

You can make a care plan together with the contact nurse, the doctor and other staff. The care plan should answer questions that are important to you. Here you can read more about the contact nurse and the care plan.

New medical assessment

You can get a  new medical assessment if you are unsure if you are receiving the care and treatment that is best for you. You will then see another doctor, usually at another specialist clinic. Ask your doctor if you want to know more about how to get a new medical assessment.

Support if you are related

It can feel difficult to be close to someone who is sick. It is common to want to support while you have a strong concern and feel bad.

If you have other people in your area, try letting them support you. It can be family members, friends or acquaintances. Often it will be easier for them to help you if you tell them how it feels and shows if you are worried or sad.

You can get help from the contact nurse or a curator at the hospital if you are close and need supportive calls.

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