Neuroendocrine carcinoid tumour- NHS v Private query

[Chris1802p]

hello all, I am new here, having had a lung Lobectomy for a typical carcinoid tumour a month ago. My diagnosis was a bit disjointed- I am lucky enough to have private health insurance through my job, so I was seeing a colorectal consultant privately for bowel symptoms- a CT scan showed a lung nodule and I was referred to a respiratory consultant who requested a PET CT. From there I was referred to a thoracic specialist who carried out a robotic bronchoscopy and subsequent robotic Lobectomy.

I am still under a gastroenterologist privately as the PET scan showed two ‘lit up’ areas- the lung tumour and inflammation in the terminal ileum. I had a colonoscopy for that and the area is thickened and ulcerated- the specialist thinks this is Crohns and I am seeing him next week.

I have asked all the specialists involved if there could be neuroendocrine tumour in the terminal ileum- they don’t think so. I’m seeing the gastro next week so I can ask him further questions. My case was discussed at a lung MDT after the PET scan.

My question is, it is quite disjointed seeing lots of different specialists privately and I’m worried about receiving the most appropriate treatment/ plan going forward.

I would like to ask to be referred to the NHS neuroendocrine tumour unit at Royal Free, but I worry I will be refused as I have started this privately. ( Although I believe you are still entitled to NHS care) And I don’t know who to ask- GP? One of the private specialists?

Any advice would be very welcome.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Chris

Sorry to hear you had surgery for your carcinoid tumour and hope you have made a good recovery.

You could ask your GP for an NHS referral, and everyone is entitled to a second opinion, often the NHS doctors also do private work, but it would make sense to be seen in the neuroendocrine unit, which contain all the specialities that this involves. It is understandable your current concern with the different specialities and often the oncologist will discuss this with e.g. your gastroenterologist. I assume they took some biopsies from your colonoscopy to ascertain a diagnosis.

You could also ask your current specialist to refer you to the NHS Neuroendocrine unit at the Royal Free Hospital.

Even though you have gone privately initially, you are still entitled to your NHS care.

As you know a carcinoid tumour is made up of neuroendocrine cells. If you are interested, this link from Cancer Research UK provides some good information on this: cancerresearchuk.org/about-...

You are welcome to contact us if you would like to discuss anything, our ask the nurse helpline is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

All the very best.

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

[Chris1802p in reply to RoyCastleHelpline]

Well the diagnosis actually came from the pathology testing on the resected lung tumour, but the thoracic specialist didn’t give me much info other than, good news, it’s a typical carcinoid tumour which is unlikely to recur. But thank you so much for your swift and comprehensive reply- so so helpful!