Possible neuroendocrine in the lung

Hello KK123

I hope you do not mind me responding as I had a different type of cancer to yourself.

I am sorry to hear that you have been unwell since December and that now have a diagnosis of cancer in your lung.

It must be difficult to nor have a completely clear diagnosis. Have you been prescribed any medication to help with the pain while you wait for the surgery? if not, please do ask.

It is good that you do not have to wait too much longer for your surgery and I hope that it goes well and brings clarification.

In the meantime I will pop a link below with some info that may be helpful.

Neuroendocrine tumours (NETs) | Macmillan Cancer Support

If talking things through would help then please do consider giving the Support Line a call. They are lovely on there.

Hopefully someone who has had a similar journey will now see your post and offer some more support.

Jane

Hi, my journey has been a little similar. Over the last several years, I've been treated for asthma, which has progressively got worse.  Last August, I became poorly with my chest.... 6 lots of steroids, 4 lots of anti biotics and paramedics out weekend before Xmas I finally went to drs and said enough is enough. I want chest x-ray. I was xrayed 22/12 and then received a phone call from my Dr to advise they had found a lump... 29/12 in for CT.... 9th Jan first appt with consultant when I learnt it could be cancer... bronchoscopy and pet scan later, I was advised it was a carcinoid lung tumour! 

I underwent open surgery in March and had 2 lobes of my right lung and a lymph node removed... after it was removed, it was fully tested and confirmed to be a typical carcinoid.  Typical carcinoids are less aggressive and slower growing. They are satisfied that they got it all, so no chemo required.  I'm due a ct scan at 6 and 12 months and then yearly after that for 10 years in total - this is because my form of cancer was slow growing. 

There is lots of info out there, but make sure you're sticking with reputable websites to ensure you're getting correct info.

Stay strong x you got this x

Hi I have had a similar experience.  I had a persistent cough but no other symptoms, my husband insisted I visit the GP, he sent me for a chest x ray, which showed up something but not conclusive. After various scans, eventually a PET scan and a biopsy I was told it was a typical carcinoid tumour on my lower right lung. A lobectomy to remove the lower lobe was successful and I recovered well. I was then sent for another scan and a nodule was found between the two lungs which they said because of the position it was too risky for surgery.  
 I am now being treated with Lanreotide. I have had my first injection which gave me an upset stomach for about a week. But otherwise I’m ok. I have the next injection in a few days time so waiting to see what that’s like.

 I have felt reasonably well throughout the whole thing and able to carry on with most things as normal. But time will tell what will be the eventual outcome. I’m in my mid seventies and have always lived a healthy lifestyle, never smoked etc.   Just came completely out of the blue. 

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