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Need Help, Please!


carol

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I am so desperate. I posted my first message yesterday as a guest. My dad started coughing in Feb. for a month before he did a CT with MIP. It shows a 3cm tumor in right lung and some tiny little ones in both lungs. They are pretty vague on the CT with a max diameter of 2 mm. The doctors staged him IV and told my mom it was incurable. PET did not show any mets in other lung or the mediastinum, or elsewhere in the body. Now the doctor who did the PET said that those tiny little ones shown on CT must be benign. However, dad's doctor is not sure since PET has limitation on resolution for tumors < 1cm. They still stage him IV and put him on Gemzar/Carboplatin. He will do another PET after he finishes two treatments. Based on my research, whether he has lymph node involvement or not is going to be critical in deciding if he can go surgery. Is it possible that PET might have given some false negative regarding those tiny little ones shown on CT? How accurate is PET in dictating tumors smaller than 1cm even if they don't show on the film. Can the SUV value tell the differences? How accurate is PET in dictating mediastinal lymph-node metastases? Have any of you experienced false negative results from PET scan?

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Carol, Is there any way he could return to the US for treatment?

As for PET scans: the PET I had didn't light up a 2nd mass that was about 3 - 4cm. It did light up on the one everyone was concerned about. A CT guide needle biopsy determined that one was squamous cell. That 2nd one was removed along with the 1st (both in same lobe) and it was adenocarcinoma. I'm not too sure what happened w/that tumor. I was told it had lots of dead cells, but I don't know why. I had the PET scan (where it didn't light up) way before any treatments started.

That's my experience w/PET. Don't know if that was helpful or not. JudyB

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Carol

So sorry that you and your family have to go through all of this. The whole process is like being on a roller coaster. And you have the added worry of your father being treated in a hospital that has all the SARS cases.

I don't know if I can help but will at least share what I have gone through with PET scans, etc.

I was diagnosed two years ago with a 2 ccm malignant tumor of the right upper lobe. It was positioned to close to the breathing tubes so I had to go through radiation and chemo to shrink it before surgery. When the doctor tried to remove my upper right lobe he found another malignant tumor in the lower right lobe. He removed that tumor but did not remove any of the lobes as he classed me at Stage IV. After that, I returned to my oncologist for many sessions of chemo. On one of my recent CT/Bone scans, they saw a lesion in my liver. So, thinking the worst, they did a liver biopsy. The lesion was benign. So, my oncologist still not believing it was not a malignant met, scheduled me for a PET scan this past December. He told me that if that spot (or any other spot) was malignant it would light up. Well, nothing lit up.

I had more CT and Bone scans this past Feb and nothing - even the liver lision - showed. The end of this month I have more scans and hope they stay clear.

The docotrs I see seem to think the PET is the be all end all scan for cancer. I personally don't know. Just hope that they do.

Good Luck and God Bless

Sue M

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