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Long time reader, first time talker


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I have been reading the posts daily for about eight months now but wasn't sure how to ask my questions. My siutation is quite different than anything I have read. My mom age 62 was diagnosed Nov 03 with a carcinoid tumor and "spot" too high up in the lung for a biopsy. They went into to do surgery and the "spot" was a cancer free floating lymph node. Good news but, when they tested the other lymph nodes they came up with NSCLC origin unknown. So surgery was stopped and she was left with the carcinoid. She left the hosp in Jan of 04 on 4liters of Oxygen which she remains on. Her six weeks of Chemo and Radiation was concluded in May of 04. Since that time CT and x-ray have shown a spot on the adrenals a spot on the liver and recently small plueral effusion and pericardial effusion caused by the radiation? She also has developed CHF after all of this. She can walk only short distance and then is very winded. She sleeps constantly. She never was able to go back to work after her surgery.She was told she is not a canidate for any trials because of the two different types of cancer.

My questions is that they have done NO OTHER treatment or even seem concerned about the new spots. She has now lost 20lbs in the last six weeks but she still eats good. She is slightly confused but is managing well. I read statistics and she should not be here let alone doing so well. Should I be more aggressive and ask her to have more tests to see what the new things are? Or should I let this go since she has the attitude that if she doesnt know than it isnt happening. My fear is that something has been misdiagnosised or that maybe realistically the new things don't matter in the big picture or what if more can be done? What do you experts think?

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I am no expert, and I don't know much about the different types at the same time. However, I am a carcinoid tumor survivor of three years, and will certainly keep your Mom in my prayers..........

I think I would ask for a second or even a third opinion. It seems like someone should be doing SOMETHING if there are mets, right? My mom, 75, (who is now battling nsclc herself) is of the "let's not think or talk about it" mindset, too. I have kind of pushed her into admitting (1) she has cancer and (2) let's get this thing under control. She has undergone surgery three weeks ago for an upper left lobectomy, and will have chemo starting tomorrow for four rounds. She even called me yesterday to ask me questions about the chemo. It wasn't easy, but I think she is feeling more empowered. Blessings to you both -

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