I'm sorry to hear you've been diagnosed with NET lung cancer Teddybox and that you'll be having a bilobectomy soon.

Hopefully some of our members who have had this surgery will stop by when they can to share their experiences and advice but if you'd like to talk things through with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very insightful and will do all they can to answer your questions and address your concerns.

I know this must be incredibly scary Teddybox, but our community are here for you and are sending all their support your way.

Kind regards,

Steph, Cancer Chat Moderator

Iam having scans for pancreatic net at the moment already been diagnosed with kidney cancer. Are you symptomatic with flushes, I get flushes throughout the day.

Hi Alyssia,

Sorry to hear about your diagnoses! I hope you are coping okay. No I didn’t have any flushes, I don’t think it’s common to have flushed with a lung NET. I had wheezing, recurrent infections, coughing up blood etc 

Did you have a pet:ct with Dotatate radio active tracer to diagnose 

Yes, there wasn’t strong uptake on the PET FDG so then we did the Dotatate and it lit up like a light bulb. Have you had yours yet?

Due for a pet/ct but do or decided not to use a Dotatate tracer which I’m worried about incase it doesn’t show up enough 

How long did you wait between scans 

Have they done a PET FDG yet? Or are they going straight to DOTATATE. I had a the PET FDG and then the DOTATATE less than two weeks later.  It was very quick. 

Should of been a pet fdg Friday but I was not feeling well so waiting for another appointment, I was told I could not have 2 pet/ct within a month 

Oh really? I’m not sure why that is. I’ve had 5 CTs and 1 MRI between March and May. Have you had many scans recently? It might also be because the radiation wouldn’t be good for the kidney cancer.