I'm new to NET

Hi 

I'm sorry to read that you've been diagnosed with a NET and it's understandable that you should want to find out as much as you can about this type of cancer.

I don't have the experience you're looking for but I noticed that no one from the group had responded to your post yet. While you're waiting for replies you could, if you haven't already, have a look through the previous posts from members of this group to see if anyone mentions how best to deal with NETs. You could use the search bar at the top of the page to narrow your search down.

Another thought is to post your question in the ask a nurse section of the community and one of the specialist nurses will aim to reply within 2 working days.

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. 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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Hi Kama

If you find any such information I would be most grateful if you would share. 

Best wishes 

Hi, GlasgowBloke,

So far everyone I spoke to doesn't think I'm experiencing carcinoid syndrome (but they haven't ruled it out completely yet). This is because my cancer hasn't spread anywhere.

Because I've been feeling very ill and asked a number of people for help with that and so far received no solid advice, and it's been steadily getting worse for over a year, I decided to try and find out for myself.

I stopped drinking alcohol and coffee. I know I can't eat pizza, pasta with tomato sauce and beef. No overly fatty foods, even vegan burgers can be too much. To get to this point I've been making a note of everything I was eating and how I felt afterwards. It got me to a list of "definitely can't eat" foods.

I'm currently trying probiotics in the hopes that they can settle my tummy (feeling suddenly overwhelmingly sick and hungry without being sick and changing bowel habit, cramps, bloating etc, quite unpleasant). I have been avoiding a number of foods and it helped with a few symptoms but for the nausea I just can't find the solution. So probiotics (after research and trying to find the right ones) might help.

So far I stopped eating when I feel sudden hunger and sickness and just ride it out and it's slightly improved, but it's only been a week. I stopped snacking as much on chocolate or cookies. At least I stopped gaining weight, but also feeling slightly better.

Hope to hear from the hospital soon to have my tests for carcinoid syndrome / hormones or whatever it is that indicates it.

I have no idea if it helps, but thought to share what I experience and how I go about it so far.

Hi Karna

I have stage 4 neuroendocrine cancer and carcinoid syndrome. There is a lot of information out there but what I have found hard was finding other people who have this cancer. I don’t know why but this site doesn’t seem to be well used. I am happy to answer any questions you have about my experience if that helps?

Hi Kama, hope you are well. I’m new to all this and have just been reading through various posts and came across yours.

you mention that you thought you had symptoms of Carcinoid Syndrome but that others don’t think you are experiencing this. Please can I ask what symptoms you have been getting? 

I didn't see that I had the new responses here, sorry for late reply.

I was having some hot flushes, feeling nauseous, stomach aches etc. Diarrhea and constipation. Sudden hunger out of the blue or feeling bloated, lack of appetite. Palpitations. Depression. Anxiety.

Now I know that it wasn't carcinoid syndrome because I had hormone and blood tests done to rule it out.

What I found helped though was probiotics. In fact the only thing that helped me so far with my symptoms.

I wouldn't advise taking it without talking to the oncology team first as it's sometimes not recommended. I did some research and in many cases they wouldn't recommend it.

If you've checked and want to try it, I recommend finding a good one, one that is medicine (i.e. yoghurt is not guaranteed to have the bacteria). One with the right amount of bacteria too. There are many studies on the subject.

Happy to share more if that's what you're interested in.

Thank you. It turns out it wasn't it. Even though it was very similar. I still don't know why I'm unwell.