Neuroendocrine tumours
What's the scoop?
Neuroendocrine tumors (NETs) are rare and can occur in many different places in the body. They come from cells called neuroendocrine cells which take instructions from the nervous system and use those to create hormones.
In some cases NETs can be benign (non-cancerous) however the information on this page refers to malignant (cancerous) tumors.
Tell me more.
Although NETs can occur anywhere in the body, they are most commonly found in the
- appendix
- lungs
- bowel
- pancreas
NETs that are found in the digestive system or lungs are sometimes referred to as carcinoid tumors.
NETs can be either slow growing or very aggressive depending on the type of NET, however on average NETs are very treatable with a survival rate of 95% after 5 years.
Are there different types ?
The types of NETs are classified by where in the body they are found. They can also be grouped as functional and non-functional NETs.
- Functional NETs are cancerous cells that produce hormones, like normal, healthy neuroendocrine cells.
- Non-functional NETs are cancerous cells that don't produce hormones.
Because of the differences in tumors that produce hormones vs. tumors that don't produce hormones, treatment for functional and non-functional NETs will be different.
Who's most at risk?
There are a few genetic mutations that can make people at a higher risk of developing an NET. These include
- von Hippel Lindau disease
- multiple endocrine neoplasia
- neurofibroatosis type 1
- tuberous sclerosis
Other risks include those who are
- caucasian
- an adult
How can I check to see if I have it?
If you have symptoms of an NET your doctor will probably first do a physical exam to check your symptoms. This will be followed by blood and/or pee tests to check for hormone levels that may indicate NETs.
An imaging test, such as a CT, MRI or PET scan may also be used to get a better idea of where the cancer might be located in your body.
Lastly, your doctor will probably also do a biopsy (tissue sample) of the tumor to test it for cancerous cells. The procedure to do the biopsy will depend on where the tumor is located.
Treatment
Because many NETs can be slow growing, your doctor may recommend no treatment at all. If this is the case, the doctor would monitor the cancer and choose not to give any treatment until the cancer starts to grow.
If the doctor recommends treatment, it may include
- surgery
- chemotherapy
- targeted therapy
- radiation
- peptide receptor radionuclide therapy (PRRT)
- medication to control your hormones - if the tumor is functional
Chemotherapy may be used in NET treatment either after surgery or as treatment if surgery isn't possible based on the location of the tumor.
For advanced NETs, targeted drug therapy may be considered to work alongside the chemotherapy to make the treatment more effective.
Peptide receptor radionuclide therapy is a type of therapy that uses both a drug that targets the cancer cells and radiation in order to apply radiation directly on the cancerous cells.
Radiation only works against some types of NETs and may be considered for treatment if surgery isn't possible.
Because there are so many methods of treating NETs, it's important to speak with your medical team to develop a pla that's right for you.
What's the scoop?
Neuroendocrine tumors (NETs) are rare and can occur in many different places in the body. They come from cells called neuroendocrine cells which take instructions from the nervous system and use those to create hormones.
In some cases NETs can be benign (non-cancerous) however the information on this page refers to malignant (cancerous) tumors.
Tell me more.
Although NETs can occur anywhere in the body, they are most commonly found in the
- appendix
- lungs
- bowel
- pancreas
NETs that are found in the digestive system or lungs are sometimes referred to as carcinoid tumors.
NETs can be either slow growing or very aggressive depending on the type of NET, however on average NETs are very treatable with a survival rate of 95% after 5 years.
Are there different types ?
The types of NETs are classified by where in the body they are found. They can also be grouped as functional and non-functional NETs.
- Functional NETs are cancerous cells that produce hormones, like normal, healthy neuroendocrine cells.
- Non-functional NETs are cancerous cells that don't produce hormones.
Because of the differences in tumors that produce hormones vs. tumors that don't produce hormones, treatment for functional and non-functional NETs will be different.
Who's most at risk?
There are a few genetic mutations that can make people at a higher risk of developing an NET. These include
- von Hippel Lindau disease
- multiple endocrine neoplasia
- neurofibroatosis type 1
- tuberous sclerosis
Other risks include those who are
- caucasian
- an adult
How can I check to see if I have it?
If you have symptoms of an NET your doctor will probably first do a physical exam to check your symptoms. This will be followed by blood and/or pee tests to check for hormone levels that may indicate NETs.
An imaging test, such as a CT, MRI or PET scan may also be used to get a better idea of where the cancer might be located in your body.
Lastly, your doctor will probably also do a biopsy (tissue sample) of the tumor to test it for cancerous cells. The procedure to do the biopsy will depend on where the tumor is located.
Treatment
Because many NETs can be slow growing, your doctor may recommend no treatment at all. If this is the case, the doctor would monitor the cancer and choose not to give any treatment until the cancer starts to grow.
If the doctor recommends treatment, it may include
- surgery
- chemotherapy
- targeted therapy
- radiation
- peptide receptor radionuclide therapy (PRRT)
- medication to control your hormones - if the tumor is functional
Chemotherapy may be used in NET treatment either after surgery or as treatment if surgery isn't possible based on the location of the tumor.
For advanced NETs, targeted drug therapy may be considered to work alongside the chemotherapy to make the treatment more effective.
Peptide receptor radionuclide therapy is a type of therapy that uses both a drug that targets the cancer cells and radiation in order to apply radiation directly on the cancerous cells.
Radiation only works against some types of NETs and may be considered for treatment if surgery isn't possible.
Because there are so many methods of treating NETs, it's important to speak with your medical team to develop a pla that's right for you.
Symptom list:
Neuroendocrine tumours
Financial support
Not all of us are able to afford the treatment we need. Search your insurance coverage, or check out what charities may be able to offer you for your condition.
p.s. Just because you have insurance, that doesn't mean that charities or other organizations are not able to support you too.
Emotional support
Whether it's a free counseling session or to find someone with a similar diagnosis, these Germie approved charities might be able to help. Click to explore their offerings!
