Living with Neuroendocrine Cancer, Two Years on

As part of the Neuroendocrine Cancer UK Virtual Summit 2021, Jane, a member of our patient community talks about living with Neuroendocrine Cancer, two years post-diagnosis.
Click the link below for further information and support:
www.neuroendoc...

[@geetharamlall2219]

Very informative did you have ascites

[@robertfreelance317]

Thanks for the video, I've been living with this since 2008, Gallium scan next week at RF, expecting to need prrt. Your post here was very inspiring

[@neuroendocrinecanceruk]

Thank you for taking the time to watch 🙂

[@grandadsfishingboat7455]

Thankyou so much for this, I,m at the beginning of my journey.

[@neuroendocrinecanceruk]

Here if you need us! www.neuroendocrinecancer.org.uk/

[@paulalaurie7935]

My husband has just had an operation to remove the primary neuroendocrine tumour from his mesentrey plus a few tiny ones. He was lucky enough to not need a colostomy bag as surgeons managed to join his bowel back.
I have researched a lot of YT Videos about this condition but the problem is my husband does not want to know or discuss or chat about any of this. I feel that I am alone and he is merrily doing his own thing. Hopefully, when we go back to the hospital for his first outpatient appointment and the plan of action, we will find out if there is any support in New Zealand 🇳🇿

[@neuroendocrinecanceruk]

Hi, thank you for sharing your experience. It sounds like you're going through a challenging time, especially since your husband isn't ready to talk about the diagnosis or treatment. It can feel very isolating, but you're not alone. When you visit the hospital for his first outpatient appointment, hopefully, there will be more information about support available. In the meantime, here’s a link to the World NET Community Directory - incalliance.org/world-net-community-directory/ where you can find support groups in New Zealand. We're here if you need anything.
Take care,
Neuroendocrine Cancer UK Team

[@andreacockerill6676]

Iv just been diagnosed with neroendercrime lung low grade im having regular injections,im 42 have a 12 year old an 18year old..i feel fine they found it on a chest xray in both lungs my faith in jesus keeps me going,im still learning about this an some days are quite dark but i try not to focus on it an think to much about the future an just take one day at a time..thankyou so much for this as im not on Facebook ect so dont know anyone else with this but iv learnt a bit more listening to you x❤

[@neuroendocrinecanceruk]

Thank you for sharing your journey and your faith, and welcome to this community. It takes great strength and courage to face a new diagnosis, and your positive outlook is truly inspiring.
Your focus on taking one day at a time is a valuable perspective. Sometimes, when dealing with a complex condition like neuroendocrine cancer, it's the small steps and moments that matter most. Your faith can be a significant source of comfort and support during challenging times.
Remember, you're not alone on this. Even if you're not on social media, feel free to ask questions or share your thoughts anytime. We're here to provide support and understanding.

[@andreacockerill6676]

@@neuroendocrinecanceruk Thankyou so much.yes I'm still trying to understand what this type of cancer is iv read a bit but still unsure ..

[@neuroendocrinecanceruk]

@@andreacockerill6676 Are you based in the UK Andrea?

[@andreacockerill6676]

@@neuroendocrinecanceruk yes i live in Scarborough uk🙂

[@neuroendocrinecanceruk]

@@andreacockerill6676 Thanks Andrea. We are based in the UK too. I'm not sure if you're aware but we have lots of services which you may find useful, include a freephone helpline, and support groups. We are actually running a dedicated Lung online support group in December. Here is some further information: www.neuroendocrinecancer.org.uk/events/67761-256-827-717-791-760-646-674-779-314/
If you'd like to talk more about our services, please drop me an email: [e-mail], or please give our helpline a call: 0800 434 6476 (opening hours: Tues - Thurs 10am - 4pm). Leanne

[@kathygillman5450]

The UK is miles ahead of neuroendocrine cancer. I too am matastic colon primarynto.liver and lymph node. But I'm US so little research has been done

[@kathygillman5450]

Does anyone suffer from uncontrollable diahrea? I am ready to quit