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Clean Pet w/metastatic disease - should treatment be continued?

Posts: 2
Joined: May 2011

First time posting, so may botch this up. Diagnosed w/Stage IV NSCL in April '11. No lung tumor found, but malignant pleural effusion and spread to lymphs. Went on cisplat/alimpta/avastin - sick as a dog for 2 cycles. Switched cis to carbo - sick a lot less and have been doing that since. For the effusion, had to get the fluid tapped a few times last year and the doc suggested surgery. Was gung ho, then changed my mind at the last minute - good thing apparently as the lung cleared up on its own. Haven't had fluid since September. Had a clear CAT in January and just got a negative PET last week. Asked the doc what next steps were and he's not sure as he's had no experience with this. Kind of cool, frankly, to stump your doctor, but also kind of scary as I was hoping for some guidance. Has anyone experienced clean scans with my dx (oh and I developed a DVT and was on blood thinners for a few months as well, but stopped the injections in January with the clean CAT)? If so, did you stop treatment or continue?
Truthfully, I feel great now - have worked throughout and my attitude (past the first awful shock filled couple weeks, of course!) has been that this isn't the end by a long shot. While a big part of me wants to stop as I'm not sure how many good cells I'm harming trying to keep away the bad, a small part has the "if it ain't broke, don't fix it" mentality. Would appreciate any insight on others with similar experiences or books to read, sites to visit, etc.

Posts: 844
Joined: Mar 2011

First, I would like to congratulate you on having those terrific scan results. Second, I would suggest you get a second opinion. My reasoning is this, your doc does not know with any degree of certainty what your next step should be. I suspect that he is not an LC specialist and does not have a lot of experience with lung cancers yet. He should have discussed a follow up schedule with you. It is my understanding that ct and pet scans can only pick up on cancers if they have reached a certain size. (Please people, if I am wrong about those scans, correct me soon.)

That said, you are probably NED and should be happy dancing. Please keep us informed.
Best regards, Denny

Posts: 2
Joined: May 2011

Thanks, Denny. Appreciate the response. I'm doing some research myself and am meeting with the doc this week to compare notes, so hopefully will have a clearer plan then. I'll update when I know something definite.
Take care!

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