Carcinoid tumour

Hi Shhhh  welcome to the group but sorry you find yourself here.

Good to hear the surgery was a success, and you are only having to take the occasional paracetamol now. I have not had surgery, so cannot comment from a personal experience, but sounds like you are doing well.

There are members here in the group who have had similar surgeries, hopefully someone will be along soon to share their experience with you.  

Hi there!

Hope you are doing well now.  Not sure how long it has been as this post seems from some time ago.

I had a similar surgery in 2021 to remove a carcinoid tumor in left lung and the top half of my left lung.  I had complete numbness for nearly a year under my left pectoral so this seems a bit similar to you though I am a man.  It did and does continue to get better though.

I was just wondering about how your overall breathing is after such a surgery so I could compare my progressive recovery to other people.  Can you exercise?  Is it getting back to "normal" at all now?

Hi

My surgery was April 2023. The discomfort is much less than it was but after a recent chest infection did flare up again annoyingly. I also think I’ve just learnt to accept it too.

My breathing is generally good. I’m back up to 10K distances when running but my pace has slowed considerably. I get out of breath quicker walking up hills and notice a difference if it’s very windy, but good otherwise.

hope you’re doing well 

Hi! Thanks for the message back, you are the first person I have been in touch with who had nearly the same operation as I.  10k jogging, much better than I so far :).  Im 44 now and never been in bad shape but cant really seem get to running again.  Any good hints how you got up to 10k again?

Also a random q, do you feel normal physically yet?

Thanks

I don’t know of anyone who has had the same tumour either - we are a rare breed!

Apart from the area on my right side I do feel normal physically but I suppose I’ve adjusted to the fact that where I only have a 1/3 or my right lung left, that just feels very different.

With running I pretty much had to start again and build up a mile at a time. For someone who has run 18 marathons it’s felt a bitter pill to swallow. I’m 57 albeit hopefully still a young and fairly active 57. I am contemplating switching to cycling though because my default is always to compare back to how I was, which ultimately serves no purpose whatsoever.

Was yours a typical or a-typical carcinoid? Has much been said to you about data on reoccurrence risks? 

Hi there and its good to be able to relate to someone who also had this.  18 marathons - wow, that is impressive and up to a 10k already.  Far better then I, though I am not nearly the runner you are with 18 marathons under your belt.

Mine was a typical carcinoid tumor.  Yours as well?

As for all of the info I got from specialists at UCLA (I live in Los Angeles), this type of carcinoid, while cancer and had to be handled, VERY rarely recurs.  I forget the exact percentages I was given, but it was something like a 3 or 5% chance of it recurring.  Maybe I am off a bit but it was definitely under 10%.

A question, and the one I am really trying to compare to someone who has a similar surgery (I assume yours sent through the back, between the ribs, long scar, etc.?).

Other than the lung, are you overall feeling fine?  Any disjointed thought processes, feeling dizzy, etc?  Or like there is a lack of oxygen to the brain or some such?  Sounds a bit out there, but just asking.

P.S.  Impressed at your recovery, and being a young 57