How do NET impact your everyday life?

@Courtney_J I had to retire early because of my diagnosis. The symptoms were just too much for me and I couldn't work with them. Between the general fatigue, the cramps and diarrhea I couldn't go into the office. It makes it hard for me to do basic things like cooking and cleaning, so unfortunately a lot of that falls on my wonderful wife. I think it's hard on her because she worries about me, and I also feel guilty for putting her through this. The both of us decided to see a therapist individually to talk about it and try to cope with it all and it's been a great help.

This is my experience too, for what it's worth.

The guilt of the strain I put on my husband is real. It's almost too much to bare sometimes.

@Caesar @Paulboo I agree with you both. The diarrhea and fatigue just wipes me out and I'm of no help at all to my family. I feel so awful about it. I've had to give up a lot of things that I loved doing because I just don't have the energy for it. My quality of life has really suffered. At least I know now I'm not alone in feeling like this.

Hello everyone,

How long after diagnosis or how far into the disease did all these lifestyle changes started happening?

I was recently diagnosed (on Sep 16th, 2021) with grade 1 NETs, still haven't found out where it originated but it is suspected to be Gastrointestinal, it has spread to other organs so it is stage IV. 

I am 49 years old and although my energy levels have dropped a bit I am still able to do the majority of my daily activities without issues. Last week I received my first Lanreotide injection and so far the diarrhea seems to be under control (not sure if it will stay like that or if it will be more persistent in the future) 

I am sure my energy levels will continue to drop and the severity of my symptoms will increase as my disease progresses but as of now I have no idea what to expect in terms of lifestyle changes in the short to mid term.

Any insight you can provide will be greatly appreciated.

Thank you,

Michel.