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Joined: Thu Mar 14, 2019 9:33 pm

Advice please, NET

Postby jac98 » Mon Mar 18, 2019 8:22 pm

Hi all. I'm new here and am hoping you may be able to point me in the right direction.
My dad is 70 and was diagnosed with a pancreatic neuroendocrine tumour 2 years ago. I live hundreds of miles away from him and my mum and they attend hospital appointments alone. The problem is that they get very confused, don't ask the medical staff any questions and often can't remember what they've been told.
Dad has just had his annual scan and says that because he cannot have surgery on the tumour (due to his many other health issues), he has been told there is nothing more to be done and to return if he has symptoms (pain in the abdomen or back). No more follow up scans booked. Apparently his tumour measures 12mm and is slow growing. He has also today been diagnosed with type 2 diabetes.
So, I am a little confused as I only have my dad's version of events. Is it likely that he has just been sent away to wait for more severe symptoms to occur? Is there any other treatment he could be offered? And is there anything else I can try to access for him?
I'm grateful for any advice and guidance.
Many thanks.

PCUK Nurse Rachel R
Posts: 75
Joined: Thu Jan 25, 2018 10:52 am

Re: Advice please, NET

Postby PCUK Nurse Rachel R » Wed Mar 20, 2019 3:36 pm

Hi jac98,

Welcome to the forum on behalf of the Nursing team here at the charity. I am sorry to hear of your Dad’s diagnosis of a pancreatic neuroendocrine tumour. I imagine it must be incredibly hard and often frustrating to live quite a distance from your parents and not be able to be there at these important appointments, especially as they find it tricky to recall the information given to them and pass it on to you.

It might help to touch base with us on the support line, we could have a discussion with you about what we would usually expect to see offered in terms of follow-up. We speak mainly about pancreatic adenocarcinoma and often signpost folk to the Patient NET Foundation for more expert advice on neuroendocrine tumours, you may have heard of this? Their website is: https://www.netpatientfoundation.org and they also offer a nurse support service.

Please do be in touch as you may need.

With kind regards


Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707