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change in diagnosis


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I wasn't sure where to post this. But last week I found out that I never had nsclc all along I atypical carcinoid lung cancer. I was first dx in Dec. 2000 and the path. said it "looked" like nsclc. So they went with that and started pumping me full of the strongest chemo I could take. Since I had shown no symptoms and was a relativly healthy person. Six months later chemo had taken its toll on my body and I could have any more chemo. the cancer naver changed. Some of you know my history. I went for a second opinion at M D Anderson in Oct.2001. The onc. there said no hope for me and should try iressa. I almost died from the iressa. Now here we are Feb. 2003 and my new onc. just found out that MD Anderson had dx me in Oct. 2001 with atypical carcinoid. This information was never told to doctors and never filed in my records. I wasn't until my onc. called MD and asked if they had done one or would do another that he found out about the change. Thankfully I finally posted a message on this board about my cancer and how odd it was acting that I got a clue from John about the carcinoid. I researched it myself and knew that's what I had. I called my dr. and left a message. Them he called MD and so it goes.

I am so angry I could scream. This type of cancer doesn't respond to chemo and I should have never had the iressa. If the first pathologist had just done 2 more stains he would have gotten the correct dx. Today I have diabetes and a debilitating arthritis due to these treatments that I should have never had. I already had a low trust level for the medical profession this just confirms it for me. I basically don't trust them at all. If I hadn't started making noise about doing something about my quality of life because of the arthritis I think I would still be in the dark about my condition. There was a 5 week period between the second dx and the start of the iressa. Why wan't the onc. at MD told, whay wan't I told or my dr. back home. There was enough time to stop the iressa, to not even start it. I think the saddest part is that I never have suffered any symptoms from the cancer, it's all been from the treatment. All this confirms my suspicions...it's all about money and to the drs. we are just a number.

guess I should go change my signature information!


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http://www.healthology.com/search_new.a ... ySearch=2#

Ask about Sandostain LAR and a Octreoscan

Sorry you had to go through all that. It still makes me mad how arrogant some doctors are.

A long time ago, I found some research that said Large cell neuroendocrine carcinoma (my mom's cancer) behaves like small cell and is best treated as small cell.

She (my mom) had an upper lobe removed, radiation and was given a vaccine.

My problem with the vaccine was that no tests were done. Many vaccines target specific receptors or specific tumors. They can be tested for a mutated p53 gene, RAS oncogenes, or HER2, etc. She never received any tests and was blindly given the vaccine

Anyway, it did not work. Now there are mets in the brain and liver.

Tiny, make sure they do a liver scan or brain scan every so often. At the very least they can palpitate the liver to see if it is enlarged

Tiny, I am glad they caught it early though. I would make sure you stay on top of it, but also try not to think about it sometimes and just enjoy the day.

Good luck.


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Hi John,

Thanks for the tip about brain and liver scans. They did a bone scan about 8 months ago, and it was negative. I have wondered about the "old bean" myself and now will definitely follow up on it. I hadn't even considered the liver picture (hehe). I continue to have lung scans every 2-3 months, but will ask about a brain MRI my next visit. :shock: All my best to your mom and take care of yourself; your mom needs you and is sooo lucky to have you for her son. :D

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