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Change in diagnosis


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Hello all,

I had posted this in another forum but Dave suggested I post it here.

In Dec. 2000 I was dx with nsclc and given chemo. It didn't work. At the end of 6 months my body couldn't take any more and the chemo stopped. All this time the cancer had never changed by so much as an inch either way. In Oct. 2001 I went to MD Anderson for a second opinion. They said I had 3B nsclc and only thing was the iressa trial. So I tried it and almost died from it. Over 2 years later my cancer still has not changed. But the effects of the chemo and iressa have left me with diabetes and a debilitating arthritis that is very painful. In the meantime I changed oncologists. He basically said he had never seen nsclc act this way. We started talking about doing radio frequency ablation but first he wanted a pet scan and to check with MD Anderson about my pathology test because my records never showed they did one. He couldn't find any results anywhere. I posted a little of this a few days ago and John responded and said to look up carcinoid. I did a research and was convinced that's what I had. I called my dr. on Mon morning and he called MD. He found out that in Oct. 2001 they had changed my dx. to atypical carcinoid. Only they never told anyone and never put it in my records. I would have not qualified for the iressa trial since I didn't have nsclc. I so clearly remember the dr. at MD standing there with hands on hips saying I've seen enough, you have cancer in the lungs and liver and I don't need to read any more reports or do any more tests. The only thing left for you is this clinical trial. There was a 5 week time span between the new dx. and the start of iressa. If I had known I would not have taken the iressa. I have since found out that the pathologist in my home town basically didn't get a clear dx. They stopped when it "looked" like nsclc. If their egos would have let them send it on to a larger institution, I would have never taken chemo.

I am so angry and disappointed and I don't know where to turn to or how to or what to do. I've been in so much physical pain lately that it's been hard to focus on this new development. I've had to start all over again with new tests and on Feb. 24 I start an octreoscan. It doesn't sound hard it just takes 4 days to complete. And maybe that's okay for many ....but for me it will take alot of time and energy on my part to get out and do this.

I just can't get past the part where my dx was changed only nobody was told. I don't know how that works. Do the path. tell the dr. face to face, is it written down, just how is information passed from one dr. to another.

I've always had a low threshold of trust for the medical profession. This does it for me. What I now know is YOU are the only one who can take care of you. I feel like for the medical profession its really all about money and we are just another number. Thankfully there is a place like this to visist and ask questions or just blow off steam. I keep asking myself...if I had only starting questioning sooner.


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Amen Teet.

I too, am officially disenchanted with the medical community. I began to question my mom's first oncologist's methodology when he refused doing a PET scan for my mom. In most of the message I've read on here about pleural effusion, people had a PET scan done before they would even be staged. This guy would not entertain any of my research or questions, and said that treatment for my mom would be palliative only. Not to mention my mom's PCP was treating her for what she thought was "arthritis" for months prior to her diagnosis. Greed, greed, greed. Sometimes I think I sound like the warmonger of the message board.


Luckily my mom's new oncologist is the complete opposite.

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