A new survey for NETs patients is available on Carenity

Quick, easy survey to complete, won't take too much of your time to do and it's a worthwhile survey as I feel there isn't enough information out there, including clinical trials and the results of those studies. As the condition I have is quite rare I feel quite isolated, I also feel that doctors are using me as a guinea pig of type as there are not enough clinical trial results for them to advise me about the treatment pathway. Just wish I could find someone out there who has been in a similar position with a similar condition/illness. 

Hello @Dragonfly40 

Thanks for your feedback on the survey!

It's true that there is not much information on NETs, and this is why we invite you to talk to other patients in the discussions you find in this group, create your own conversations in order to discuss a specific topic that interests you or that you wish to learn about.

If you have questions, please don't hesitate to contact me.

Kind regards,

Margarita

yes I too had a small neuroendocrine tumour in my small bowel had a operation on 21 dec 2016 I am currently recovering from not much known about these tumours so not much to go on have my out patients appointment on 6th jan 2017 with my consultant in Watford hospital :)

@Dragonfly40 how are doing?

Hi, getting there slowly thank you, all treatment has finished now thank goodness, just need to get my body back as I've lost a lot of weight and muscle. Need to get steroid levels back to normal and grow some hair?.

I looked at your profile, I hope you don't mind, and saw that you've a recent diagnosis of an endocrine tumour so more importantly how are you doing and coping? 

Warm wishes, 

Heather

hi Heather thank you yes ive lost weight bit of muscle tone gone so gradually back to walking doing best to eat well eat fresh filtered water no sugar low fat only had my operation on 21st dec 2016 so still baby steps so glad for you that your getting there too and think of you often :) I have help from the endocrine nurses and receive once a week councilling at the moment which helps me mentally  heres to 2017 Heather :)