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Atypical carcinoid tumor of the lung


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Hello @Jannysuzy   I’m sorry to hear about your diagnosis.   I’m glad you found this group.  It is a great place for support.  I was diagnosed with a “Typical” carcinoid tumor last year.   As if there is anything typical about that.  
 

The initial time after diagnosis was terrifying for me.  It started to settle down as I found out more and had a treatment plan settled on.  For me it was a right upper lobe lobectomy.  It’s amazing how your mind can switch from absolute despair into its fight response.  
 

Hang in there.   

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Thank you Curt.  Did you have surgery?  I would like to have radiotherapy.  I have no idea yet whether I can or not.  Mine is upper left lobe.  I thought it was typical until I asked my doc after the bronchoscopy results.  He didn’t say, so I had to call back and then I found it was atypical and malignant.  I really don’t know if I can do surgery.  I have osteoporosis and fibromyalgia and anemia and am pretty frail anyway.  I never thought i would get ‘lung’ cancer.  Maybe some other type, but not lung.  I only smoked for a few years in college in the 60s and quit 50 years ago.  I am now 74.  So right now my fear is surgery or it spreading while I wait even through the weekend.  Good luck to you and keep me posted if you want.  Thanks. 

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Any additional info? Size? Location? Lymph nodes involved? Just one tumor?

The options you have depend greatly on the answers to the above. Fill in the blanks and I'm guessing many here would give you some great input into options other than surgery.

I have found my doctors to be awesome...but none of them have ever had the disease they are so well trained to treat. Which is why this board is so important. It is a truth that someone can try to understand what it is like to have lung cancer, but it is impossible to do. You really have to have walked the walk to get it. Most here get it.

Anybody know a good oncologist who is a survivor as well? That's the doctor I want...

Peace

Tom

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I don’t think anyone ever thinks they will get lung cancer.  Don’t beat yourself up over the smoking thing.  Many people who never smoked, including me, get.  The rates of none smokers getting lung cancer are increasing.  I did have surgery last year.  So far so good.  Surgery is a good option for treatment if you can handle it.  There are some other really good treatments available if surgery isn’t an option.   

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  • Thanks Curt,  did you have n atypical carcinoid tumor?  Just curious.  I don’t know about surgery, because I have a few conditions and don’t know if I can handle it.  I’m anemic, have fibromyalgia (21 years), osteoporosis and osteopenia and afib.  The afib is never under control even with my meds.  So I am not ‘fit’.  Unfortunately.  They might have to do it anyway.  I see the radiologist tomorrow.  Ever since I had my 2nd bronchoscopy (the first I had twilight and was too wiggly) so I had a general for it.  It was a week ago Monday and I feel like I still haven’t recovered.  Is that normal?
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