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Fact or Fiction - New Info from Doctors - Need to hear from some other experts

jcavanaugh
Posts: 100
Joined: Mar 2004

I have a few questions. Before the questions, I would like to say that since my dad's diagnosis in 2002 (stage IV), his doctors have all agreed that his cea is a good marker for him. We have been told this.

1. New doctors says that cea as a marker diminishes over time (longer you have cancer, it is not as good a marker for you) - anyone else heard this?

2. My dad has been on vextibux (sp.) and campostar since June. His cea went from 12? to 14 in 3 months. As a result, his lung mets have shrunk considerably but there has been no change in his liver (completely stable). This is based on a ct scan. Now doctor says this drug combo is not working. Not working - shrinkage in lungs?? Also, we asked him if some of the spots in the liver could be dead. We want a pet scan. He said that is not necessary because a pet scan will not show small spots. I thought that a pet scan will light any active cancer. I know this because back in January 2005, an extremely small spot showed up both on a ct and pet scan for my dad. We had it ablated. So, he wants to change the treatment to erbitrux, campostar,and 5fl (sp.). My dad has already been on erbitrux. So confused. We have an appointment to see our oncologist (other doctor) at Hopkins on October 23. We are working with both doctors. I do not think that this oncologist is communicating with the Hopkins oncologist like he should (promised to do).

Also, he wants to send my dad's scan to a local surgeon (review - ablation). We do not like this doctor (long story). We told him that he was free to do that but we would not see him. Any surgical treatments would be done at major hospitals like hopkins or anderson. If the spots are too small lite up on a pet scan, what could a surgeon do for us in terms of ablation? Does not make sense.

Can anyone shed light on this or answer my questions? I would really appreciate it. Very frustated :(

spongebob's picture
spongebob
Posts: 2598
Joined: Apr 2003

j -

Can't say as I've ever heard about your comment in question #1. I know plentyof folks who had a spike in CEA years later and that clued them in to thinking something was wrong. Like I mentioned before, CEA isn't the best diagnostic tool, but I have not heard of diminished effectiveness over time. I can see the number fluctuating within a larger range if someone's CEA is in the hundreds (for example needing to see a 10-20 point shift to read as an indicator as opposed to a 1-2 point shift being an indicator if someone's CEA is under 5). Maybe this is something new - you might ask for a copy of the journal article that your onc got that info from (for your own edification, of course)

Re Question #2 - Always listen to your inner voice and avoid doctors who don't listen to your outer voice! If your voice is telling you there's a problem, there probably is - shop for your doctors and question their protocols, not that you don't trust them, but you DO want toknow what they're thinking and why they'redoing what they're doing. If it doesn'tmake sense, you need to havea dialogue. If it still doesn't makesense after that, you need to find someone else whom you can understand.

Just my 2-cents

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