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need information please regarding change in dx......


JoniRobertWilson

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My husband was diagnosed on 3/17/04 with limited stage SCLC. Over three weeks ago, I found a lump in his back. I called the oncology nurse and she said she would have another nurse "check it out". My husband was there that day getting chemo. Never heard back from the nurse. I called later that day and was told - it was "fatty tissue" and that he was being monitored closely and I shouldn't worry about that......ok, during that period my husband had started complaining about massive pain. Last Monday we went for a chest x-ray. The chest x-ray showed that his right lung was collapsed and that he body cavity was full of fluid. No one called us. I called on Wednesday and said I was brinign him up....they called back and had requested the x-rays. Scheduled for him an appt to get the fluid drained. Drained 2 1/2 liters. Ok, they schedule NO follow up so I called the family doc and she scheduled another chest x-ray. Showed fluid again. They said see you on Monday at the oncologist. Nice. Monday they said, this sin't good news. Scheduled us to see a surgeon. He went in on Tuesday and had a 4 liters drained again and the surgeon found more cancer than we had ever thought. They did pathology and are now saying it is showing as NSCLC. Said the SCLC was probably wiped out by chemo. Oh, and the lump on his back which I was basically told to buzz off about turned out to be cancer. The doctor doesn't give us much hope so we're heading to Houston.

I know from reading a few of you have had change in dx. Please let me know about this - should we have been treating this all the same no matter if it is SC or NSCLC? Seems like it would be different but doc says no.

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Guest Phyllis

Hi, I'm sorry I can't answer your questions, but to say there are a lot of people on here with sclc. They should be able to help you. I am glad you are going to see someone else. Good luck.

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Guest bean_si (Not Active)

I wish I could help you. I've been going through the same type of confusion. First dx'd as SCLC, treated with chemo & radiation concurrently. 6 months later re-dx'd with NSCLC & the chemo is different and while they don't do surgery on SCLC, they do on NSCLC. Also, I don't think they generally do radiation for NSCLC.

It sure seems that SCLC is often mis-diagnosed. This is from a study done in a University in Japan: "The correct diagnosis of SCLC and NSCLC is essential both for therapeutic and prognostic reasons." Let your onc realize that you know the latter. Here's the link but it's written in medical lingo:

http://216.239.57.104/search?q=cache:XG ... a%22&hl=en

I'm kinda upset about this mis-diagnosed. Now, the local onc is disagreeing with the NSCLC dx made by MD Anderson. I'm HMO so I can't get treated except locally - no university type hospital available. Crud. I really feel for you and pray that everything improves for you.

Cat

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Joni, I'm just reading about what has happened with Robert and getting caught up. I'm really really angry for you. It sounds to me like some sloppy work was going on there. That being said, anger only drains energy one needs to use in a more productive manner. I'm glad you're going to MD Anderson. Dave and I had a back up plan in place to go to Johns Hopkins if something didn't go right with his treatment. We have a dear friend (one of the dad who traveled to China with us) who is an oncology nurse there. Thank goodness we didn't need to use the back up plan.

Please keep us posted. I feel that once things get straightened out and Robert gets some good medical help and the appropriate treatment plan he'll do well. Just a little bump in the road, that's all.

Take care and God Bless!

Karen C.

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