Welcome to the forum. I've had a quick search for you and the most recent member I can find to have posted with a diagnosis of carcinoid is [@positive45] .
It looks like they haven't been active on the forum for a few months but you can find their most recent thread here. If you post a comment on the thread then they may get a notification and reply to you.
We do have a number of members here on the forum who have been dealing with different cancer diagnoses for years and I'm sure that some of them will be able to identify with some of your experiences if you want to chat.
We do also have a team of nurses here at Cancer Research UK so if you have any specfic questions you wanted to ask you could give them a call on 0808 800 4040 (Mon-Fri 9am-5pm).
Sending you our best wishes, Jenn Cancer Chat moderator
Hello CaraW, I was diagnosed in November 2015, resulting in an Upper Lobe Lobectomy in January 2016. I had a carcinoid tumour which bought on pneumonia, which is how I found out about it. After treating the infection I had to have a bronchoscopy and a few weeks later confirmed it as carcinoid. The tumour had partially block my wind pipe and the infection had damaged the lobe thus requiring pretty brutal surgery. I am still recovering, suffering aches and pains.
Hi GaryMD. They found a cyst in one of my kidneys which turned out to be carcinoid. My urologist had never come across it before so referred me to a specialist at the Beatson in Glasgow. He told me he had only seen 6 people with it and I was only 1 of 2 who had it in the kidney. My kidney was removed and then a year and a half later they told me i had an enlarged lymph node. It was about 6 months before it was large enough to remove. That was October 2015 and they had to open me up to get to it because it was close to a major blood vessel. It was touch and go for a while. They removed 25 lymph nodes and cancer was present in 4 of them. I never thought after a year and a half I'd still be in pain. They've also mentioned carcinoid syndrome to me a few times so not sure if I now have this too. I am being closely monitored so I am confident that if it returns again they will be on top of it. I hope you do eventually get some relief. I take it you are still being monitored?
