Possible neuroendocrine in the lung

Kk123 5 months ago

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Hi all

So I've been unwell with chest pain since December finally had an xray in Feb then various scans etc to now be waiting for surgery to remove what they now believe is a lung carcinoid.

All the way along the consultant was confident it was at first a pulmonary embolism then a benign nodule, sadly was reactive on PET so now the belief is carcinoid.

It's my lower right lobe and I'm living I constant pain so we are forgetting a biopsy and going straight for lobectomey within the month.

Just wondering if anyone else has a similar story, or can shed any light because what you read online is erm mixed to say the least. The hospital has not given me much info at all as they are not really sure what it is other than it is cancer in my lung.

jane2511 5 months ago

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

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Pixiemoo 3 months ago

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

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Possible neuroendocrine in the lung