Hi my dad was diagnosed last week with metastatic neuroendocrine tumors and with an unknown primary. It took 3 months of tests at different places to get to the diagnosis. He is now waiting for an appointment with a specialist at the QE hospital in Birmingham.
He is 75, the tumors are small and he has no symptoms, I know this next bit sounds direct, but my sister and I want to know what this all means but don't want to keep asking questions or upset my mum, has anyone been in this situation?
Will the specialists keep trying to find the primary source? Does the fact that he has no symptoms mean he will be around longer?
Thanks for reading.
Hi Wand and a warm welcome to the online community
I'm sorry to read that your dad has recently been diagnosed with metastatic neuroendocrine tumours from an unknown primary and I know what a worrying time this will be for you.
I can't help with your questions but noticed that your post hadn't had any replies yet. I can understand why you don't want to keep asking your parents these questions so thought I'd suggest that you speak to one of the nurses on the Macmillan Support Line. It's free to call them on 0808 808 0000 and they're available every day from 8am to 8pm. Whilst they don't have access to your dad's NHS records they can answer general questions.
Another thing you could do is to speak, with your dad's permission, to his CNS as she will have access to your dad's records so could possibly answer your questions more fully.
It would be great if you could pop something about your dad's diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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