Mets in liver

Hi Katkinnie

Sorry you have had to join us but welcome.

As you can see from my profile I have Lung NET with Liver Mets. You are very unlucky to have two different Cancers...

As you have discovered NETs are complex and unfortunately need Specialists to understand. Monitoring is key. Where are you being treated?

There is a NET charity which has a website dedicated to supporting NET patients and families and has a resource section full of valuable information on investigations, netpatientfoundation.org They are also Specialist Nurses available to advise if you do not already have one attached to your team. 

Take care

Hi Christine thanks for your reply and also sorry to find you in this situation! I am being treated at St James in Leeds and am currently under Prof Toogood who is a liver surgeon. My NET was found in October when my second liver resection was found to be neuroendocrine and not bowel cancer as they had expected. I have a follow up appointment after my latest liver resection (March) on Monday and am going to push to be referred to Dr Anthony who is a NET specialist. My only worry is I have been in contact with a fellow 'sufferer' who has seen Dr A and he doesn't seem keen on surgery whereas the prof is very keen to cut things out which I feel is the best option. 

As you can imagine I am very worried as the last tumour grew to the size of a gold ball between Oct and Feb!

Thanks I have found the NET foundation and have downloaded their handbook. I am also following Ronny Allen on facebook who seems very knowledgable.

Just nice to have other people to talk to who understand what is going on I find it so hard to explain my situation to people especially as I have 2 cancers!! On the plus side (I love to be positive) I have been clear of bowel cancer for 18 months

You take care as well x

Sounds like your in good hands, with a knowledgeable NET specialist and a proactive surgeon. The MDT will also be involved in those discussions so you should feel confident they are working on what is best for you..

You also have access to the Nurse Specialist who I have always found to be really helpful when you are trying to navigate your way through the system.

The main thing I have learnt is that no two patients are the same, no NETs respond the same and treatments are so varied for each individual. It took me a while to get my head around that but I now go with the flow until it’s time to make decisions on treatment plans, then I get proactive 

Best wishes

Hi Katkinnie,

Just a note of sympathy and good wishes. You do seem to be having a tough time but you are in good hands. I have three golf balls and numerous marbles in my dear old liver which is not complaining so far. They are what they call well differentiated non resectable NET Mets originating from a mid gut primary which was removed 5 years ago. Growth is being slowed down by drugs.

Best of luck with your ongoing treatment.