Rediagnosed with Large Cell Neuroendocrine Lung Cancer

Hi Ginajsy, sorry you have had to join us but you are very welcome.

You are welcome to read my profile and as you will see I am a Lung Primary too, but well differentiated. The key to the best NET care is to be under a Specialist Centre and to have regular scans and follow up.

Not sure if  you have found the specialist NET charity website netpatientfoundation.org which has a wealth of detailed information and access to Specialist Nurses if needed. They really are brilliant. 

Unfortunatly this group is not very active but the site does give access to lots of other support and advice 

Best wishes on your journey and let me know if you need any more information 

Hi Mitzie

Thank you so much for your reply. I was wondering if I may be the only one. The poorly differentiated was from the original diagnosis. I think she may have said well differentiated yesterday. I am unsure, it was one of those consultations that went in away that I really was not expecting. I will clarify soon.

I will have a look at your profile thank you. I am not sure about a specialist centre. There definitely isn't one where I am from but I go to Southampton for a lot of my treatment, so I may get referred to someone there. I think it took my team by surprise so they are still figuring out what to do with me.

Thank you I managed to find the group whilst googling and have requested to join.

I get the feeling that scans would be more regular. I was on three month checks but they said they were bringing forward my next one to about 6 weeks after surgery rather than waiting, so I guess the more frequent scans will be the norm.

Thank you, I am sure there will be many more questions as it all unfolds.

You’ll be pleased to hear Southampton is a NET Centre of Excellence so you will be in good hands..

Hi Gina

I too have just joined this group and so hello.   Southampton is a NET specialist centre, and they also have a NET nurse specialist who you may have met.  There is also a local charity/patient support called Planets and I think they have a meeting coming up soon.  It certainly seems to be a roller coaster of a journey for all of us but best wishes to you.

Hi Deb

Thank you I will look on to that.

Since I joined this group I have been diagnosed with brain Mets. Once I have both sides removed then they wont to hit me with more treatment. So I definitely do need to know which treatment is the best for me. As far as I know it looks like my chest was clear. So now it's fighting like make to get on top of the brain mets.

I hope all goes well with you.