It's lovely to see you back on the forum Andy :)

I think a few members have been trying to get in touch with you about this diagnosis on one of your older discussions so I'm just going to include a link here so you can get to it more quickly.

Some of them are from earlier this year but I'm sure they will be really grateful to hear from you Andy.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Steph,

I cannot access the link to get the questiomed and ideally assist them,15 years now kicking.

Best Wishes

Andy

Sorry you're having trouble using the link I provided Andy.

Hopefully just clicking here: www.cancerresearchuk.org/.../neuroendocrine-tumours-1 will resolve it but if not just click here: www.cancerresearchuk.org/.../andydorro1 to access your About Me and click on the discussion you started 9 months ago.

All the best, 

Steph, Cancer Chat Moderator

Hello,

I am Andy.

I have had a Neuroencrine Tumour for 15  years given a 5 year break in the middle.

During this time as you will appreciate i have had most treatments including PRRT L90.

I would sat look at me you would not have any idea as i have hasd good people on the NHS being there for me at the right time.

The reason for my message is to offer assistance to anyone who has been diagnosed with NETS.

Due to awareness there is a lot more information on line as awareness is getting better.

You can find information on CRUK site and the NET PATIENT FOUNDATION all with a wealth of information.

The ome vital point if at all possible is get your GP to refer you to a NET Doctor who understands it,

The cancer is a complex nasty cancer that can affect any age and anywhere in the body often with no idea you have it, Thr cancer mimics other illnesses like IBS.

There are new treatments coming on line as awareness is building.

If you need any information let me know and i will try and help.

Another good source of information is on You Tube search Prof Caplin of the london Royal Free and his greek Colleague who have excellent lectures that are full of information and help you understand NETS, The two know NETS inside out but there are others on You Tube.

Well enough fom Myself.

Brst Wishes

Andy.

Hi I'm on treatment for neuroencrin I have it in my liver pancreas and spleen. I don't know much about it other than taking the medication that the doctor prescribed. I don't know what to expect. I don't have much pain and would like to find out what's in front of me. I would appreciate any advice you can give. Thanks. Hughie 

Hi Hughiem,

Welcome to Cancer Chat. I just wanted to send a reply to note that is has been a while since andydorro1 last posted on the forum. You may still get a reply from them, but if not you can always create your own new discussion on the forum to try to get replies from others, if you would like to.

Wishing you all the best,

Ben
Cancer Chat Moderator

Thank you for your reply.