Newbie with MEN type1 and pNETs

Welcome but sorry that you have had to join us.

Im a Lung NET so not much similarity to your story. I found netpatientfoundation.com very helpful and there are Specialist Nurses available by email or phone if you need to contact them.

Good luck on your journey 

Thanks for your reply. I’ve lost track of the amount of time I have spent on that web site, extremely helpful!! I’ve also attend 2 of the local meetings and found those useful also. Not tried the nurses yet, I think I’ll contact them if I forget to ask any questions at appointments etc. Hope you are well and thanks for replying Simon 

So glad you had found them. I’m sure Ronnie the Community Champion will be along soon as he has more your type of NET than mine

Good luck on your journey 

watch and wait is probably sensible at this point because as I understand pNETs associated with MEN, they tend to be more indolent than a sporadic NET. Even with sporadic NETs (not familial), watch and wait is common in smaller tumours. 

Good luck with the critical illness claim - we had a conversation about that the other week.  community.macmillan.org.uk/.../who-classifcations-for-nets-help

Hi Ronny.a, 

I was pleased with the treatment plan to be honest (all things taken into consideration)

I’ve read the blog re insurance (very helpful). I’ve placed the call today so fingers crossed. However, I have a feeling it will be a fight but my consultant has said he’ll support all the way the best he can along with Macmillan. 

Can I take this opportunity to thank you for replying but also for your social media pages and all the replies you have posted to other people’s blogs!! The information you have provided on these pages has proven to be invaluable to me!! Please do keep this good work up and all the best to you and thanks again!! 

Simon 

Just joined the site and seen your post. How are you getting on with your pNETs? I have a grade 2 pNET in neck of pancreas. I am too watching & waiting to see if growth. Just don’t know how much risk to take in case it suddenly spreads. But thought of major surgery is risky too.

Good evening. I was supposed to see my NETCancer Professor on 21st Jan however it was cancelled as whilst they had the MRI from  November it did not show the tumour even though they know it is in the Pancreas. I had to go for a C T scan last week. I now have to wait for the appointment to discuss the results.  My PNET is grade 2, i do not know where abouts on the Pancreas it is. I have already had surgery on the small bowel & stomach in 2017 to remove the NETS there. I am now worried about new symptoms, i have discmfort under the right armpit spreading into  the back.. When do you next see your Doctor? 

kenny53 Have you had a DOTA scan? The DOTA scan can give a better view of Neuroendocrine cancer sites.

Hi, I am not sure. I had that many tests 2 years ago I cannot remember all the names. I am going to see Professor Pritchard in Liverpool tomorrow & I will ask him I will let you know what he says. Thankyou for your reply.

Sorry only just seen your reply - all been a little crazy in last couple of weeks as dad just diagnosed with Astrocytoma, so forgotten about my issues. Next see doctor and have another CT scan at end of March and they’ll do a comparison to see if any growth in 4 months. Hopefully nothing as really can’t have surgery at moment with my dad, but need to look after myself too! Have you seen anyone about your new symptoms?