Hello - husband diagnosed with grade 2 Neuroendocrine cancer - in shock

Hi Gouvernor Bliss and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Good Afternoon,

I was also diagnosed with Neuroendocrine cancer Christmas 2021. The primary tumour is in the Pancreas but is inoperable and I too have others in my liver. I have Octreotide injections every 4 weeks to hopefully keep the main tumour in check. Your husband will probably have quite a few scans on the near future to determine the position & state of any further metastases, I know I did over the first three months after the cancer was first found, but it should settle down to a routine going forward. Myself, I have blood & urine tests every six months and a scan every twelve months, with oncology appointments every six months to coincide with the test results. My wife went through the denial stage also but was soon into the anger stage where she seemed to be cross at everything to do with my condition and questioning the way that I was being managed. I am sure that you are worried and frightened about where all this will take you but I have found that the best way to deal with cancer is to take the view that I am living with cancer - not dying from it. I hope all goes well with your husbands upcoming scans & tests,

Take Care,

Phil

Hello Phil

Thank you so much for taking the time to let me know your story & we are so sorry to hear about your diagnosis. 
it sounds like the treatment you are getting is good so that gives us hope. 
i expect you both felt the same, it’s the unknown & uncertainty that makes it all seem so gloomy. 
we are being looked after in Southampton which seems to be a very good place for cancer patients so that is a relief for us. 
we had a very long day yesterday as my husband had to do another CT scan plus an MRI. We have to travel over from the Isle of Wight so my poor husband was exhausted by the time we got back late evening. 
he will be starting Lanreotide on Friday so am hoping he gets as good treatment as you are having. 
keep in touch & good luck with your journey. 

Hi governor bliss , sorry to see that your husband has been diagnosed with neuroendocrine cancer it's a shock at 1st , I was diagnosed in February 2021 after the removal of my gallbladder in December 2020 , I had my small bowl removed in march of 2021 but it had masterised to the liver which can't be operated on so I'm on the same injections every 4 weeks which my wife has learnt to do as I have to have it in the rear (so have to make sure she's in a good mood?) lol , it's a slow growing cancer so please try not to worry as you can make yourselfs ill, we carry on as normal as it's our way of coping although it's at the back of your mind, I'm now starting treatment of radiotherapy over 16 weeks which will slow them down even more, it's a new treatment at this hospital and I'm the 1st patient so all the team are very excited. Will keep you updated on how it goes 1st one is on the 18th July 

Oh gosh you’ve been through it haven’t you?

which hospital are you under?

we are with Southampton General which is apparently very good. 
im not sure about me learning to do the injections but hey ho. It’s easier for a loved one to do than to be the person who is actually on the receiving end. 
I must admit, all the messages I’m getting on this forum are kind, helpful & upbeat which is really helping. 
good luck with the radiotherapy & please do let us know how you get on. 

Hello again Gouvenor Bliss.

You are very lucky to be dealing with Southampton Hospital, it is an ENETS centre of excellence so you will definitely be getting the very best care. I am in Devon so my nearest is in Cardiff. I don't know if anyone has mentioned it to you but there is an organisation dedicated to supporting Neuroendocrine Cancer patients which has a very informative website - Neuroendocrine Cancer Uk, if you haven't already, take a look at their website. You can also call them with any queries and talk to a dedicated Neuroendocrine Nurse.

Best Wishes,

Phil