Neuroendocrine pancreatic tumour 2.5cm

Dear Ells1

Thanks for getting in touch and welcome to the online community. My name is Karen and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.  

I’m sorry to hear of your diagnosis of a neuroendocrine tumour of the pancreas, Ells1. It must be a difficult time for you, and making treatment decisions naturally can give feelings of worry and uncertainty.

We don’t have access to your NHS medical records on the support line, but reading the treatment options that your consultant has discussed with you, it may be a non-functioning pancreatic neuroendocrine tumour (NET) that you have? Although still rare, these are the most common type of pancreatic NET cancers.

It's completely understandable that you have questions and concerns before making the right treatment decision for you, Ells1. Your consultant and nurse specialist should be supportive and give you the time you need to help to answer your questions and concerns, and sometimes it might mean asking for more than one appointment with them. That is a perfectly reasonable request.  

You say you are looking for others to share their real experiences. You may wish to consider posting a message on the neuroendocrine forum and the pancreatic cancer forums, where you can share experiences and gain support from others in a similar situation.

Although as nurses on the support line we can’t answer specific details about your recommended treatment plan, the following general information may be helpful in preparing for further discussions with your treatment team.

Your individual situation is discussed at a Multi-Disciplinary Team (MDT) meeting to determine the recommended treatment options for you. The treatment options offered depends on:

• Where the NET is and its size
• How many tumours you have
• Whether it has spread to other parts of the body
• Your general health and fitness
• The symptoms you have

Part of this for you should include your existing medical conditions, for example, you have a solitary left kidney in stage 3 renal failure that is managed with medication. It’s only natural to have concerns about any treatment you have, as you say you can often get poorly, and it can take longer for you to recover. This should be a key consideration by your treatment team when recommending the best treatment options for you.

You mention you feel surgery feels like the best option for you, but you have concerns if they remove your spleen. The spleen does have an important role in the immune system; however, people can live a normal life without it. Some people are born without a spleen or have it removed because of injury or illness. This information from the NHS may be helpful to look at.

There is more information about other non-surgical treatment options here, one of which is Lanreotide.

In preparation for further discussions with your treatment team this information on questions to ask your healthcare team and help with making treatment decisions may be useful.

Pancreatic cancer UK has a support line where you can speak directly to one on the pancreatic cancer nurse specialists, they also have a range of information and support.

Sometimes we can spend more time to answer your questions and explain more on the telephone, Ells1, please don’t hesitate to give one of our nurses a call to chat things through.  

I hope this information is helpful. If you have any other information or support needs, the Macmillan Support Line offers practical, clinical, financial, and emotional support.

Best wishes

Karen, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/Khe/SMJ