Treatment for small bowel neuroendocrine cancer

Small bowel neuroendocrine cancers start in the neuroendocrine cells of the small bowel .   

The treatment you have depends on what type of neuroendocrine cancer you have. And it depends on the stage of your cancer.

These cancers grow at different rates. For example, some NETs grow slowly. But NECs usually grow much faster. This means the treatment and outlook (prognosis ) is different for each type.

Treatment also depends on where the cancer is in your small bowel. There are 3 sections to your small bowel:

• the duodenum is just beyond the lower part of the stomach and connects the small bowel to the stomach
• the jejunum is the middle part
• the ileum is the lower part, which connects to the large bowel (colon)

Surgery is the main treatment for small bowel neuroendocrine cancers.

Deciding which treatment you need

A team of doctors and other professionals discuss the best treatment and care for you. They are called a neuroendocrine multidisciplinary team (MDT). The neuroendocrine MDT can talk to your doctors and recommend the best treatment options for you. This means that not everyone with a small bowel NET will need to travel to a neuroendocrine specialist hospital for treatment. 

The treatment you have depends on: 

• where the neuroendocrine cancer started in your small bowel
• the type of neuroendocrine cancer
• whether it has spread (stage)
• how fast the cells are growing (the grade)
• the symptoms you have
• your general health and fitness

You are likely to have a clinical nurse specialist (CNS). They go to the MDT meetings. They can help answer your questions and support you. And can be your main point of contact throughout your treatment.

Types of treatment for small bowel neuroendocrine cancer

The main treatment for small bowel neuroendocrine cancer is surgery. Surgery might be all the treatment you need if your cancer hasn’t spread.

But surgery isn’t always possible. Some small bowel neuroendocrine cancers might have already started to spread when you are diagnosed. Or you might not be well enough to have it. You continue to have treatment to help your symptoms if surgery isn’t an option.

Your treatment options depend on whether you have a NET or a NEC.

Other treatments for small bowel NETs include:

• somatostatin analogues
• chemotherapy
• targeted cancer drugs
• peptide receptor radionuclide therapy (PRRT)
• surgery or other treatments for cancer that has spread to your liver

For small bowel NECs you might have:

• surgery
• chemotherapy
• radiotherapy
• treatment for cancer that has spread to your liver

Surgery to remove small bowel neuroendocrine cancer

There are different types of surgery. The type of operation you have depends on several factors. These include:

• where the cancer is in your small bowel
• the size of your cancer
• how fast your cancer is growing - this is the grade

You might have:

• open surgery - this means the surgeon makes a large cut (incision) in your tummy
• keyhole (laparoscopic) surgery - your surgeon makes some small incisions in your tummy and puts a laparoscope and other small instruments though these to remove the cancer

How you will feel and how quickly you recover depends on the type of surgery you have. Your surgeon will be able to give you information about surgery and your recovery afterwards.

Types of surgery

You might have surgery to remove the part of your small bowel where the cancer is. This operation is called a segmental small bowel resection. The surgeon might also remove the nearby lymph nodes . 

Depending on your situation you might also have surgery to remove:

• your gallbladder – this operation is called a cholecystectomy and is to prevent gallstones developing later on
• part of your large bowel (colon ) – this operation is called a right hemicolectomy, you might have it if your cancer is at the end of your ileum

You don’t have any more treatment after surgery if your surgeon is able to remove all the tumours.

Other treatments for small bowel neuroendocrine tumours (NETs)

The following treatments might be options for small bowel NETs. The treatment for small bowel NECs is different. We have more information about NEC treatment further down the page.

You might have treatments to help with symptoms if:

• you can’t have surgery to remove the NET
• the NET has spread to another part of the body
• the NET came back after the initial treatment

These treatments can control your symptoms and help you feel better. But they won’t get rid of the NET. 

Debulking surgery
This means removing as much of the NET as possible, even if it has spread to another part of the body. This can help with symptoms.

Somatostatin analogues 
These are medicines such as octreotide or lanreotide. You might have somatostatin analogues if your small bowel NET picks up somatostatin. Doctors can check for this using special scans.

Some people have collection of symptoms called carcinoid syndrome. Somatostatin inhibitors can help lower the hormones which cause this syndrome. This helps to control symptoms such as diarrhoea and skin flushing. They might also shrink the tumour. 

Targeted cancer drugs
You might have a type of targeted drug called everolimus if you have a small bowel NET that has spread. And if other treatments aren’t working. 

Peptide receptor radionuclide therapy 
This is a type of radioisotope therapy. It is a way of using radioactive medicines to treat cancer. 

Chemotherapy
You might have chemotherapy for a fast growing cancer and if other treatment isn’t controlling the cancer. You might have one or more of the following drugs:

• capecitabine
• temozolomide
• fluorouracil
• streptozotocin

For cancer that has spread to your liver you might have:

• trans arterial embolisation (TAE) to cancer in your liver
• radiofrequency ablation 
• surgery to remove cancer from your liver
• a liver transplant – this is a rare treatment for NETs

Treatment for small bowel neuroendocrine carcinomas (NECs)

Treatment depends on your individual situation. Unfortunately, small bowel NEC can be harder to treat than small bowel NETs. This is because NECs are always fast growing and are more likely to spread.

You might have surgery if your cancer hasn’t spread. You can read about different types of surgery higher up this page.

You usually also have chemotherapy treatment as well as surgery. You might have this:

• before surgery – this is called neoadjuvant chemotherapy
• after surgery – this is called adjuvant chemotherapy

You have chemotherapy on its own or combined with radiotherapy. This is called chemoradiotherapy.

Chemotherapy drugs include:

• cisplatin or carboplatin
• etoposide
• irinotecan

Follow up

You usually have follow up appointments after treatment. This is to check how you are and see whether you have any problems or worries. 

You might also have tests on some visits. The tests might include:

• blood tests
• an MRI or CT scan

How often you see your doctor depends on:

• the grade of your NET
• whether it has spread to other parts of the body
• what treatment you have had
• any side effects you might have

It is important you contact your doctors if you have any worrying symptoms between appointments.

Research and clinical trials

Doctors are always trying to improve treatments and reduce the side effects. As part of your treatment, your doctor might ask you to take part in a clinical trial. This might be to test a new treatment or to look at different combinations of existing treatments.

Coping with neuroendocrine cancer

You might have physical changes to your body because of your cancer or the treatment. These changes can be hard to cope with and can affect the way you feel about yourself. It can help to talk to friends and family. Or join a support group to meet people in a similar situation.

We have a discussion forum called Cancer Chat. It is a place for anyone affected by cancer. You can share experiences, stories and information with other people with cancer.

You might need practical advice about benefits or financial help. There is help and support available. There are also organisations to support and provide information to people affected by neuroendocrine cancer.