Find out about research into the causes, diagnosis and treatment of carcinoid tumours.
All cancer treatments have to be fully researched before they can be used for everyone. This is so we can be sure that:
- they work
- they work better than the treatments already available
- they are known to be safe
This video shows what it is like to take part in a trial.
Ash: I was offered a place on a trial by my cancer nurse
Jean: There was a new trial with new drugs and they were confident it would work and they offered it to me and I’m so glad I took it.
Nilesh: What we did, my wife and I, was to do some research on the internet. We came across the source trial which is what I went on and we took that to the doctor and then requested that we be put on to that.
Amy: The only thing that did sort of trouble us as a family when they did tell us was that it was possibly quite painful and there may be some side effects that they didn’t know about.
Ash: I was quite concerned about taking part in a trial because you hear the word trial and you think its test.
Nilesh: You know you hear about trials, clinical trials, drug trials things like that. My reservations were what the side effects were going to be.
Ash: I decided it was the right thing for me because it would potentially offer patients in the future less side effect risk.
Jean: There were lots of questions I had to ask and they were all answered and I was confident in going through the trial and the after care.
Nilesh: Right from day one they’ve been monitoring me. You know I have regular checkups and all that.
Amy: Any symptoms that arose with Poppy, somebody was always there to make sure that she wasn’t in any pain or any suffering.
Ash: I didn’t feel that they were hiding anything from me which when you’re talking about a clinical trial is so important.
Jean: It’s a really warm feeling knowing that what you did has helped other people.
Nilesh: I just hope that I played a part in a new drug that’s out there.
Ash: For other patients and also for society in general.
Nilesh: You’ve got to feel comfortable about the trial itself before you sign up for it. So do your background knowledge and just be 100% that that’s where you want to go.
Ash: Think about it very carefully. Read all of the background literature and ask lots and lots of questions because there’s no harm in doing that.
Researchers are looking at genes in people who have carcinoid tumours, to learn more about how they develop. This could eventually help us to prevent tumours from developing, or find them earlier in people who have an increased risk.
The researchers also hope to find better ways of diagnosing and treating these types of tumours by studying gene changes.
Researchers have made great progress in diagnosing carcinoid tumours. But they continue to look for better tests and ways of monitoring the tumours, such as different scanning techniques.
Researchers are also looking at ways of picking up tumour cells that are travelling in the bloodstream (circulating tumour cells). This could help us diagnose carcinoid tumours and might predict how well treatment will work.
Surgery can cure early stage carcinoid tumours. But treatment is more difficult for tumours that have spread to another part of the body.
A combination of chemotherapy drugs can help to control the tumour and any symptoms it causes. But some tumours are more sensitive to chemotherapy than others. Doctors continue to look into why this is. They are also looking for new drugs or better combinations of drugs.
Somatostatin analogue drugs are one of the main treatments for carcinoid. Pasireotide is a new type of somatostatin analogue that helps to control symptoms caused by carcinoid tumours. It might have a role in treating tumours that are no longer responding to other somatostatin analogues. Trials are looking into this.
Growth factor blocker drugs
These drugs (such as sunitinib) block proteins that make cells grow and multiply. Doctors use them to help control the growth of carcinoid tumours in the pancreas that cannot be removed with surgery or have spread to another part of the body.
Everolimus is another drug that stops a particular protein called mTOR from working properly. Doctors might use it to treat advanced pancreatic carcinoid tumours. This drug is not available on the NHS in England at the moment. But it might be soon, and it is funded in Scotland and Wales.
Recent trials have shown that everolimus is also able to control the growth of neuroendocrine tumours (carcinoid) in the lung or digestive (gastro intestinal) system. And has recently been approved for use in Europe.
Monoclonal antibody drugs (MABs) recognise abnormal protein on cancer cells. They can:
- change how the cancer cell works
- take chemotherapy or radiotherapy into the cell to kill it
- make it easier for the immune system to recognise and kill cancer cells
Bevacizumab is an MAB that doctors have been looking at for advanced carcinoid tumours. They have also been looking at giving it with chemotherapy drugs such as temozolomide or capecitabine.
Researchers are looking for new drugs than can help control the symptoms of carcinoid syndrome if somatostatin analogues are not working. One of these drugs is telotristat etiprate, which has shown promising results so far in trials.
Living with carcinoid tumours
Carcinoid tumours usually grow slowly. Your symptoms and your treatment can affect your quality of life.
As carcinoid tumours can be a chronic condition, doctors don't want to make people feel worse with treatment rather than better. As part of trials looking at the treatment of these tumours, doctors collect information about people's quality of life during and after treatment. One way of doing this is with questionnaires.
Some carcinoid tumours can release hormones that cause particular symptoms, for example flushing of the face and diarrhoea (together called carcinoid syndrome).
The same hormones that produce these symptoms might also cause damage to the valves in the heart. This is called carcinoid heart disease. It does not always need treatment but if it does, surgeons can replace these valves. Researchers want to find ways of identifying who is most likely to develop carcinoid heart disease and the best way of monitoring them.