Hi,

Hi Jamw and welcome to the Online Community. I just dropped by and noticed you've not had a reply from the members here as yet. This is a very quiet forum, as you say it's a rare cancer. I did a little research and it seems it can be hereditary.

I'm attaching a link to some reading matter on Neuroendocrine tumours (nets) which you might find helpful. In the meantime until the members here come back and chat, why not read through some of the older threads and just reply to any which interest you. There's no etiquette as such, we're all here to support each other in any way.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

Sending you welcoming hugs B xx

Thank you very much for your reply. I shall have a read and will hopefully know more when i see the surgeon on Wednesday.

Hi Jamw,  My partner has just been diagnosed with a Pancreatic Neuroendoctrine Tumour so we've been thrown in the deep end too.  She's still to have more tests to identify the exact type of tumour, so more waiting.  We're in East Sussex.... where are you being treated? 

Hi, sorry to hear this, I am being treated at the Royal Liverpool Hospital, I was booked in for surgery this coming week, however my specialist is having a meeting on Monday and is arranging for me to have a Gallium68 scan in London, I still have no idea what grade mine are but know that I have 3 on my pancreas.

Wow..... Liverpool to London... that's a long way to go for a scan!  We're hoping that my partner's dototate scan will be done at Brighton, further along the coast from us.  Apparently her tumour is inoperable, due to involvement with two major blood vessels, nerves etc.... we were really hoping that she could have surgery.  If yours goes ahead I wish you all the best for a speedy recovery.  Will you have Whipple surgery?  We still don't know what grade hers is either.  Tumour was found 6 weeks ago after an A&E admission for abdominal pain.  Initially they thought it was the more common exocrine cancer.  With no treatment plan yet we feel in limbo. Good luck with the scan and really hope they can proceed with your treatment as soon as possible. 

I live in North Wales so it's a bit of a trek to both, the operation will be to take out some of the body of the Pancreas and the tail, if it goes ahead, got to see what happens after the meeting on Monday and the scan in London, I hope your partner gets the treatment she needs very soon.