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Does anyone know of a lung carcinoid reoccuring ?
I had the lower lobe of my right lung removed (typical carcinoid)
They told me if it was to come back it would do so within 2 years.
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Lung tumors worry ???
- By sitamouse
- Posted May 1, 2009 at 9:19 am · 4 replies
- In What, me worry?
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- By Chum
- Posted May 1, 2009 at 9:23 am
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They told me that it was "most likely to come back" in the first two years, if it came back at all. But there also is a 1-2% chance it will come back any year. Realize that there is a 98-99% chance it will not!
Courage
Chum
- By liligoldman
- Posted May 1, 2009 at 12:54 pm
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I heard the same thing, and I had the same thing as you. Two months post-open thoracotomy and I'm doing great! My typical carcinoid was 4x4.5cm and in my left lower lobe.
So now the next two years are the most important for follow-up, and we need to be monitored for at least 5 years. We are going to beat this!! We are so lucky to have such good stats. 98-99% chance of no reoccurrence! Keep your head up and message me any time you want to talk about this!
Best
Liliana
- By leehee1
- Posted May 9, 2009 at 5:31 am
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I sort of hate to be a party pooper. I too am post right thoracotomy - upper right lobe removed for 1.5cm carcinoid tumor.
I actually have read that because the tumors are so slow growing (yippee!) that we have to be monitored for life.
How do you get monitored? What scans/ tests etc?
Medical literature indicates that people have recurrence and/or mets even up to 30 years post surgery. The larger the original tumor, the greater the chances of mets (which I guess is true for most tumors).
- By liligoldman
- Posted May 16, 2009 at 3:19 pm
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Yes, I totally agree - we *do* have to be monitored for life. I've heard, however, that the first 5 years are the most important.
A lot of literature gives prognostic factors - like tumor size, mets to local lymph nodes, age of patient and so forth as possible indicators of chances of recurrence. However, I've stopped thinking too much about those as they are just a numbers game, and no matter how we cut it our chances of recurrence with carcinoid is LOW. It's still pretty much a 2% chance of recurrence, esp. from 1990 on, when surgeries and cancer treatments have gotten better (this is just what I've gathered from researching medical articles online). I also think it has a lot to do with the skill of the surgeon performing the operation - i.e. the better the surgeon and the more precise he is, the better chance he got all the cancer out.
I will be getting monitored every 6 months with CT scan, bloodwork (checking Chromogranin-A levels, which are good for determining whether there is any carcinoid cells in our bodies), and an Octreotide scan.
My first go-through with all these tests, after surgery, will be in June. My surgery took place at the beginning of February. The next go-through, after June, will be in December, 6 months later.
I am interested in hearing about how others who had a carcinoid are being monitored...
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