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CEA Question/Doctor Issues

jcavanaugh
Posts: 100
Joined: Mar 2004

From June 07 to October 07, my dad's cea went from 128 to 14. He had a ct that showed slight increase in size of liver mets but decrease in lung mets. So, doctor swithced drugs. All of a sudden cea spiked. Tested on October 15 (132) then on October 19 (30). Went from 132 to 30 in four days. Our other doctor at hopkins said that tumors stretch before they die and sometimes the cea can spike when tumors die and release into the blood stream. Has this happened to anyone else?
Second, we have a conflict between our two doctors. The local doctor in Williamsburg does not seem happy that we are seeing a specialist at hopkins. We told him from the beginning that we would be seeing both of them. Hopkins doctor was suprised by the drug switch since the first drug was working but agreed that my dad should stay on the new drug. Hopkins doctor wants a pet scan done not a ct scan in November. Doctor in Williamsburg wants a ct scan done instead but is willing to order a pet/ct (reluctantly). My dad still wants to see the doctor in Williamsburg (more convenient for receiving treatment). I just want the two doctors to communicate. I believe that the hopkins doctors is great. He said my dad will live many more years. There are a lot of options on the table for him. Any suggestions for how to deal with the Williamsburg doctor?

Thanks!!!!

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

I don't know about the tumor expanding in response to the chemo, prior to it shrinking, but the CEA can rise. See my post of 10/31/07. In the case of the two oncologists having different opinions I do think you have to decide with which one your father is most comfortable with and go with that one. Not to say you shouldn't get another opinion, you should. But if you want to follow the advice of the second opinion that's where the care should be obtained unless the first oncologist agrees. Otherwise it puts the first oncologist in a very difficult position. Especially if he is following someone else's program, for example, and it doesn't work.

Dick

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

CEA issues are so difficult to understand and they are explained differently to me by different doctors.

As for your doctors working together - I've had great success with having 2 doctors. I go to MD Anderson in Houston where they have a department that "specializes" in colon cancer and have my scans, pets, and all other major work done, then I have a local oncologist where I have my chemo! My local guy takes care of me during my chemo and I have someone to call in case of emergencies. They work great together and no one is upset. However, I do rely on MD Anderson doctor as my MAIN doctor. Local oncologists are good, some are great, but many times they don't have the resources at hand and the expertise in a specific cancer - they handle all cancers. My question is how can someone who treats breast cancer, lymphoma, bone cancer and all the other cancers, possible keep up on the latest treatments of colon cancer? Also, doctors from MD Anderson (and I'm sure at Johns Hopkins) work in teams and if they have a question, they have another specialist right there. That's my opinion. I would be wary of a doctor that doesn't want you to see another doctor.....

Kerry

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi there,
As far as I know, CEA is a good marker for some of us, but not for others. The only way to know for sure if you "have a problem" is if there is a steady rise in CEA over a period of time. With the wild fluctuations your Dad is having, who knows...
As for the doctors. I also have seen my local doctor and have gone to MD Anderson. I had to go there for my liver surgery and followed up with my surgical oncologist there as well as my doctor here locally. She is the one who referred me to the doctor at MD Anderson in the first place and the two have been communicating without any problems. I think she deferrs to him because like Kerry said, he's the colon cancer expert...
As far as a the scans go, since the doctor locally went ahead and ordered the Pet/CT I wouldn't worry about it too much, but maybe you ought to have a little heart-to-heart with him about why he is not pleased? That is what I would do. I think you just need to tell it like it is, because your Dad's welfare is too important not to.
Last year I was "cut loose" from my doc at MD Anderson since I have not had any more problems, but he said I could feel free to e-mail him any time I have questions and he said once a patient, always (his) patient, so I can go back there anytime I want to.
Take care and good luck with it,
Susan

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