Hello Anastasia, I have come to you because my specialist bowe

nurse has never seen this cancer before although has worked in colorectal for many years , so I have not got any confidence in her

she has not been able to answer my questions. I am seeing a consultant but again they have worked in the same hospital for many years and if the nurse is saying I am their first case I feel I need a second opinion. 
I was hoping more people would have replied to my post who may have this very rare cancer. 
I would appreciate if anyone medical from cancer research could give me an answer 

Hello, and thank you for posting, I am sorry for the late response.

I can appreciate your concern at being diagnosed with a rarer cancer and wanting to hear from others. I have posted here our website information on your diagnosis which talks through current treatment options if you have not seen it already.

Others on this forum may come forward with their own experiences of this cancer, but the Neuroendocrine UK charity have an online forum which might also be useful.

Hopefully you will soon see a consultant who will talk through what they think is the best treatment plan for you. This plan will have been decided by a group of specialists from your hospital trust called an (MDT)  multi disciplinary team. As a research charity we do not have a medical team who can review information and give an opinion. If after you have spoken with your team you feel you need a second opinion then we have information on this here.

Take care Always forever and I hope you get the information you need soon. If you want to talk any of this out do call one of the nurses on our helpline on Freephone 0808 800 4040, the lines are open 9am till 5pm, Monday to Friday.

Sarah