Hello Marjanhol60

We have had a number of members post who have been living with NETs or caring for someone with a NET diagnosis. If you use the forum search function at the top of the page to enter the term "NET" you will find lots of posts relating to different types of NET diagnoses and hopefully you will be able to connect with someone. 

We also have some information on our website about neuroendocrine tumours that you may find helpful. You might also want to have a look at the Neuroendocrine Cancer UK website which offers various sources of support to those living with NETs. 

If you'd like to talk things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

I hope this helps. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Marjanhol60, my husband has a pancreatic NET that has spread to his liver. He is in his late 50s.

He was diagnosed with pancreatic cancer at A&E last October and it was a few months before that turned out to be the wrong diagnosis. He started treatment in January this year.

He is currently having chemo (CapTem) - a three month scan has shown very minor shrinkage in the tumours which is disappointing - but at least they aren’t growing! He’s also on Lanreotide and takes Creon every day to help his digestion.  

So far he is doing well. He has had some minor side effects from the chemo but they are manageable, and he is still very active, including sport (though I’m worried this will be harder for him than he expects). 

What’s your situation? It’s one of those cancers that few people have ever heard of so it’s good to be able to speak with people going through the same thing. 

Hi there that’s good news about your husband I’m glad he’s doing well long may it continue!!

we are facing some challenges unfortunately there have been slight increases in the tumours after being stable for over 4 years so we are now hoping to be able to access the PRRT treatment which we should know in the next couple of weeks. Unfortunately my husbands diabetes is causing more issues that the NET at the moment so things are quite difficult for us right now.

its so important your husband keeps active, my husband was very active until the diabetes issues and it really helped with his mental wellbeing,

please keep in touch like you say because it’s very rare it’s lovely being able to chat to others in the same position.

all the best 

Thanks. I hope you get access to the PRRT, and I’m sorry to hear about diabetes - I can imagine managing two conditions makes it much more complicated.

It’s been mentioned as a next phase of treatment for my husband - once he finishes chemo and when/if the tumours start growing again. 

And thank you too for the comments about exercise - it makes such a difference for him.. 

Hello to you both.

I have Neuroendocrine of the small bowel which has spread to the liver. Unfortunately it is unoperable as the tumours cover 97% of my liver.

I am already on PRRT, had second dose 10 days ago. It really is quite awful, was unable to do much at all.

I am very weak and although I do manage to do bits and pieces it is a massive struggle.

I am normally a very strong  positive person so being like this is very frustrating.

There is no way I could do any sports, I struggle to get down the road and certainly can't do it on my own.

I have no other health issues, always been healthy. I am 54 years old and was diagnosed in January. 

I am also taking codeine for pain, steroids, the monthly injection plus daily top ups that I do myself.

As I said I remain very positive and try and do as much as possible but am struggling to keep sane.

I eat a very healthy Mediterranean organic diet where possible which helps alot.

I guess I just wanted to know how you are coping mentally.

Oooh and I am growing my own tomatoes and trying to save the bees!

Ruthy

I have just had surgery to remove an NET carcinoid from my right lung the operation was a success they got all the tumour and there was no spread all I know its a very rare cancer  and is normally down to mutations / DNA in the neoendocrine cells 

Regards stephen