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Mom was diagnosed stage IV
midnight_angeleyes posted:
My mom was diagnosed in May '07 w/Colon Cancer. She started Chemo and Radiation treatments and by January '08 needed surgery to have a colostomy b/c of a stricture of the rectum and a botched procedure that we were told shouldn't have been done. The surgeon informed us it was Stage IV but had removed the "mass" during surgery. I have been told it is now in the lymphs around her lung but I feel the dr's aren't being straight with me. I don't know if my mother has told them not to be or if they aren't being completely straight with her either. I was told then she was in remission but they have never seen it last more than 5 yrs and there won't really be anything they can do when it comes out of remission. Can anyone give me any information that seems would be missing. I realize all cases are different and they comend her for her positive attitude and the Radiation Dr. said she should have died w/in a year but the surgery stayed that (thank god). I just always end up feeling like I'm not being fully informed b/c things just don't seem to add up from what I'm told to things I find doing research. I have a PET scan from her (pre-surgery) and if what they say about cancer "lighting up like a christmas tree" is right then there are a lot more areas than just the colon area and lung area lit up.
Harleygirl responded:
My husband and I feel the same way. It is as if the doctors decide what to tell us and when. They seem compassionate yet withdrawn. I am to a point I don't believe anything I am told now until I see it in writing. My husband had total faith in his team until this past week. He ended up back in the hospital and was giving so little information on what was happening and why the drugs that he does not trust any more as well. He has told them he did not want anything held back yet it seems they are holding back. His comment was "Do they think they are God?". Just don't know and I am tooooo wore out to fight.
brunosbud responded:
Can you explain to me what her dr(s) have to gain by withholding vital information from her (or you)? I can tell you what they have to lose...their license, for one.

Can you explain why a doctor would risk "that" assuming he/she has no prior relationship to either you or your mom?

I will say that most cancer specialists are busy, busy people and they, generally, will not go out of their way to chit-chat; there's too many patients to see and not enough hrs in the day. I researched my best friend's Stage IV, thoroughly, and I had extremely detailed questions regarding her pre-treatment, post-chemo & post-Sir Sphere options . As a professional courtesy, I faxed them to the dr's office two days before every scheduled follow-up meeting...

Every one of my questions (and my friend's) were answered thoroughly and honestly.

As you research treatment protocols for stage IV lymph or liver spread, you'll find its well established and documented and no doctor (in his/her right mind) would deviate from these standards to any significant degree. Its really not a question of trust. Doctors will simply not go out on a limb for their patients if it risks getting sued for malpractice. That's why they can behave that way to patients...their following standard procedures that will hold up to review board scrutiny...

and, the board does not suspend licenses when drs are not congenial and chit-chatty. That's the way it is, unfortunately.

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