DIPNECH and carcinoid tumors anyone?

Hi Tangle123  I have done a search of the site and unfortunately I couldn’t find anything about DIPNECH. I understand it is a very rare condition where the cells in the lung grow and change into a carcinoid tumour. 

I wonder if you have a specific question regarding DIPNECH if you would want to ask the question in the Ask a Nurse  group. 

Sorry I cannot help with this, but just wanted to ask how you are feeling now after the lung resection? 

Hi,  I have very recently been diagnosed with dipnech and several small carcinoid tumours in my lungs.

I have had a CT scan, nett scan and recently had to go to Guys for Dototate scan. 

I am seeing a thoracic surgeon this week to find out options for treatment. One option is to remove the largest carcinoid tumour and have somostatin analogue injections monthly. 

I found out today I have Dipnech when I had my follow up appt after surgery to remove a secondary tumour. That was from kidney cancer and the resection had clear margins but showed the start of Dipnech. Been referred back to my oncology team for the kidney/lung cancer and also a referral to a consultant who specialises in Dipnech/endocrinology. So a waiting game for my next appointments! 

Hi both - sorry you are on this journey too; finding experts has proved quite hard! I am on a scanning schedule but the cough and pain is getting worse and an extra ct scan showed progression unexpected). Back with the NET team next week but they are liver not lung specialists. Have you found doctors who work with DIPNECH/Lung NETS?

My hospital is in Oxford. They do have a whole endocrine unit as well as the usual general lung and oncology experts. 

I have now seen the cardiothoracic surgeon and will be having surgery to remove one of the neuroendocrine tumours in my right lung plus the lymph nodes. I believe it's the largest and most reactive tumour. That operation will be in a different hospital where they have a large and modern cardiothoracic unit. 

That's in a few weeks. 

She is hoping to do it via VATS if she can and is also hoping not to have to remove a whole lobe but may need to. 

I haven't yet seen anyone about the dipnec yet,  guessing that will come after I recover from the surgery. I have been coughing for about 15 years now but it has always been diagnosed as asthma and I have 2 different inhalers. I suspect it has been dipnech all the time.