My husband has a form of NET too and uses paracetamol on the clock on doctors recommendations. Paracetamol 2 tablets , 3x a day and then please ask your doctor for stronger stuff if you need it. The key is to take the paracetamol on the clock, even if you may not be feeling pain at that time. The doctor explained its background pain control. 

Thank you so much. My problem is it’s take 5 months in investigating but have decide what treatment plan they have. MDT meeting is delay twice due to radiologist is unavailable. 

I’m sorry to hear that Shahzad, waiting is the worst. But in the meantime, please feel free to push for pain control, call them and ask for painkillers. Plus your GP may also be able to assist. Pain control need not wait for treatment plan. My husband had painkillers paracetamol and Tremadol, while waiting- we were told these don’t interfere with treatment. 

Thank you yes I will call the GP tomorrow 

Hi there 

I am on codeine for the pain, up to 6 per day depending on how bad pain is.

I am also on steroids.

I have started PRRT treatment  just had number 2.

It took about 4 months from diagnosis to getting first treatment.

Please talk to your GP or hospital team about pain relief. They also offered me morphine.

Do not suffer in silence, please call them immediately 

Good luck

X

Thank you so much. I went to see the consultant in Oxford. He said your tumour is 15mm and it’s slow growing if it’s more then 2cm then we will treat it we will put you on surveillance only. But I said what about the treatment then they said we will the biopsy for staging to treat. I m waiting for biopsy appointment 

You can still ask for pain relief though

You can still ask for pain relief though