Hello elle77

Welcome to the forum and I'm sorry to hear that your husband has recently had this diagnosis. 

NETS is a rare form of cancer and we do have some information here that may be of help fo you. However we have quite a number of posts about NETS which you can find using the forum search function. I know that we have one member [@andydorro1]‍ who has been living with NETS for some years and I've tagged him into this post. Hopefully Andy will reply and share some links to information and support groups that I know he has kindly shared in the past. 

If you'd like to speak to one of our nurses to talk things through then you're most welcome to give them a call. I'm sure they'll be able to offer some advice and support. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope that the MDT brings some positive news. Do let us know how you get on at the outpatients appointment. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Jenn 

Thank you for replying.  My husband seems to be getting a little stronger everyday following his surgery and is getting used to his stoma.   I will look at the information you suggested.  His outpatients appointment is on Tuesday (day after the MDT meeting).   While I am not sure if that is a good sign or not, at least we will not be in limbo too long.   One positive is that it appears to be slow growing (it is likely he had it for years and early symptoms were thought to be indigestion or irritable bowel) so hopefully it can be controlled.   Will let you know how we get at the outpatients 

Hi Elle77,

Sorry to hear about your husbands diagnosis, it must have been such a shock to you both.

My husband was rushed to theatre with a burst bowel just over 4 years ago, that's when they discovered his  neuro endocrine pancreatic tumour .  They were unable to remove the tumour, but it is slow growing  ( Grade 1) and it is currently being well managed. He has monthly laneotride injections at the GP surgery, with six monthly scans and oncology appointments. He is doing well, disease is described as stable and most of the time he is well, although he does get tired. He has taken early retirement but keeps busy and we holiday whenever we can, actually visiting Canada last year.  He likes to be treated normally, not  wanting  to be defined by the Net. 

The advise we were given at the outset by the surgeon was... do exactly what the oncology consultant tells you to do .... we do! 

I hope your husband soon recovers from the operation and goes on to be as positive and well as my husband. Good luck. 

Denise

Hi Denise 

Thank you for your message and glad your husband is doing well.  It was a shock to us as my husband went from enjoying a night out with our friends to having major surgery within a space of 48 hours.  He does seem to be coping well with the diagnosis and is quite positive about the future.   We will know more after Tuesday and we can perhaps start to make some plans going forward.  

Hope your husband continues to do well. 

Thank you Elle77,

I just wanted you to know there's someone here who understands and to give you hope for the future. Best wishes for Tuesday, let us know how you get on.

Things seem quite hopeful following the appointment last Tuesday.   The next step will be a scan to determine if the cancer has spread further but the doctor seemed optimistic that the tumour is slowing growing and can hopefully be controlled with monthly injections and my husband will be able to live with it for many years.   

Hopefully the next appointment will also bring postive news. 

Thanks everyone 

Hi Elle

Good to hear the consultant is optimistic about the future. It sounds as though he will be having similar treatment to my husband.  I hope results from your husbands scans are positive and he responds well to the treatment, hopefully he will enjoy many more years. 
I have been to various ' neuro endocrine information days ' which I have found very useful, I would certainly recommend you try to attend one if you can, they have helped me to understand more about this condition. 
I would like to send you both Best Wishes for the future, just look after y'selves and each other, accept help from others and enjoy life..... you like us have realised just how precious it is.

take care

Denise

xx