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Stage 4 Adeno NSCLC question, EGFT/ALK negative

fighterforu
Posts: 1
Joined: Nov 2014

Have any patients had difficulty getting their oncologist to respond to them with treatment options in a somewhat timely way?  We are at a major cancer center and have been waiting 2 weeks now after being given the results of the most recent scan, which showed progression after 7 months of first line chemo.   THe progression is not in the lung where the initial tumors were but in the liver, with what appear to be 2-3 small mets.  I have the scan results and discussed them with my onc, who wanted to consult with his partner, who runs the thoracic onco group.  After not hearing from either, I called my dr who suggested I call the other onc directly.  To make a long story short, I was sent back to my dr after being told my case had been discussed and my current dr. would call me back.  I have called the office to ask when I should expect to hear what treatment options might be available to me and have been told my dr. will call me back - should I continue to wait?  What would be a normal timeframe to get what should be a relatively simple answer - after all, there aren't many treatment options to begin with for stage 4 nsclc, although every day we get is a day closer to something new in the industry (like the FDA breatkthrough therapy announcement for Keytruda for NSCLC last week.) We have tried to be patient, but with stage 4 it's hard to wait 2 weeks for treatment options, especially when there are ones still availble to me.  I haven't beeen on a platinum therapy yet, nor been tested for PD1/PDL1 trials.   I would like to be able to see another doctor at this center, but was told I could not switch doctors without going before the board.   The dilemma is, if I have a doctor and his boss, neither of who seem to be able to communicate my options to me, am I entitled to get someone to treat me?  

z's picture
z
Posts: 1413
Joined: May 2009

I hope you will visit the Inspire web site and post your question.  There is a lot of traffic there in the lung cancer discussion area.  This is a good site but not a lot of traffic.  There are many survivors in your very situation on the Inspire web site.

Yes you are entitled to have treatment.  You look as though you have done your research.  The only thing I can think of for the delay is because you have had the 1st line chemo, they might want to wait for that to clear before they start a new one.

I had chemo for anal cancer not the lung cancer they found 1 year later.  I had the lung cancer removed with vats.

I wish you well and I hope more will chime in.  Lori

dennycee
Posts: 836
Joined: Mar 2011

Seconding everything Z said.  Let me add though -SQUEAK!!!   The squeaky wheel gets the grease.  Hope you've heard something by now though.  If yes, what did they say?  

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