Neuroendocrine tumour FAQs

Around 3,000 to 5,000 people in the UK are diagnosed every year with a neuroendocrine tumour (NET). Here in Manchester, we see around 150 new patients every year. 

Some NET conditions can be linked to genetic factors. If this is the case for you, we can talk to you about extra available support and advice for you and your family. And if you’re not sure whether your condition could be linked to genetic factors, ask your doctor about it at your next consultation.

There is a lot of information out there, but we strongly recommend that you only get your information from reliable sources. You’ll find links to the NET patient foundation and other brilliant support services in our Support organisations and links. 

With or without a NET, the answer is probably, yes. Make sure you talk to the team looking after you about possible changes. And if you smoke, we’d definitely recommend giving up. We can help you with this through our Smoking cessation services. 

There is always someone you can call for support and advice. If it is urgent, (such as a raised temperature), or if in any doubt at all, call the 24-hour Christie Hotline straight away. And if it is not urgent, you should contact your GP or nurse specialist. 

You should contact your nurse specialist so that your new symptom can be addressed as soon as possible. However, people also often have symptoms that are related to other underlying conditions and not related to their NET, which your GP will be able to give you advice on. 

You can learn more from our complementary therapy team, but you should always check with your medical team before trying anything new.

Travelling to and from hospital for your appointments and scans can become costly. But some people can get assistance.

People who get help under the statutory Travel Costs scheme

People who get

• Income support
• Income-based Job Seekers Allowance
• Income-based Employment and Support Allowance
• Pension Credit Guarantee (Not Pension Credit Savings only)
• Child Tax Credit and total income less than £15,276
• Child Tax Credit Working Tax Credit and total income less than £15,276

People who are:

• Under 20 and in full time education or "approved training"
• People who have filled in HC1 "Help with health costs" form (available from the Social Work department) and as a result got an HC2 "Full Help" or HC3 "Partial Help" certificate

Please note that cashiers will require proof of the above criteria.

For transport queries, patients should be referred to the Transport department where they will be assessed for eligibility

Benefits and advice workers

Within the hospital there are people who can offer assistance on a wide range of financial issues relating to:

• Benefits
• Debts
• Work
• Immigration status
• Charity funds
• Travel costs
• Housing
• Appeals against benefit decisions

To be referred to this service speak with your medical team.

You can also get advice from Macmillan.