kickerm&schurciakova reponse

Galliano Member Posts: 46
edited March 2014 in Colorectal Cancer #1
Thanks for your response. I had my colon resection in June of 2001. My CEA level slowly started rising in Jan. of 2002. BY June it was up to 7.5 Oncologist kept saying the number itself is not that important ,take summer off come back and see me in Sept.(I wanted her to start me on chemo as a preventative measure,she wouldn't do it)Well I came back in Sept. with CEA count of 14 had pet scan which showed a take up area in liver, surgeon said chemo should be tried first cause no exact spot could be found,I took chemo for ten months(Camptosr,5fu and calcium leukavoran)The blood count came down a little and then started back up.Cat scans and MRI's showed nothing but more pet scans kept showing spot behind portal vein.Dec. 2003 I went to U of C hospital and they could find nohing to verify pet results. They did a laprascope inside me and an ultasound inside and could find nothing. Feb. 2004 an external ultrasound found a mass in the liver. So now I've had another cat and pet and am going again to U of C for a surgical consult. By the way my cea count soared to 114 and for unknown reason went back to 68 last four week period. I am very frustrated with the whole medical procedure. Why when a pet scon showed a year and a half ago a spot could they not find it with other test? I should be done with this instead of looking forward to surgery now. Well again thanks to both of you for your replys. I hope things go well for you. Take care, Mike


  • KrisS
    KrisS Member Posts: 229
    Mike- How very frustrating and scary this has to be for you. Unfortunately imaging studies are not perfect. It is a bit unusual for CT scans not to show a nodule in the liver, but not impossible.

    I had great looking PET and CT scans a week or so before surgery to remove my rectal carcinoma, only to have metastatic disease found at surgery. Mine was in the peritoneal cavity and this is more often does not show up on CT or PET, but still it was a big blow.

    It is good to hear that others have had sucessful resections of nodules in a similar location as yours. Resection of liver nodules have, in a fair number of cases, resulted in cure. Hopefully things will go much better for you from now on. You deserve it.

    Best wishes,

  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Hi Mike, I just wanted to tell you that, from the sounds of it, your doctors did not exactly do anything wrong. The CEA test is not entirely accurate. It is just sort of an indication that something may be wrong. If it is less than 10 I do not think they usually jump to any conclusions. Also, to give an example, mine was only 1.4 when I was first diagnosed two years ago. When I had my liver met is was up to 40, so they knew something was definitely wrong then. Surgery is not something that should be entered into lightly, neither is chemo. So if they do not feel these things are absolutely necessary, then they do not generally encourage patients to do them preventatively. Rather than being angry that the medical system has somehow failed you, maybe you should try to be thankful that you had that summer w/o chemo and that your doctors didn't rush you into any unnecessary procedures. They will take care of it now.....I know it is frustrating, but just because a PET scan showed some uptake does not mean that it is necessarily cancer. Glucose is taken up at any areas of inflammation, i.e. irritation in the throat, urinary tract, infection, previous incision sites, etc. etc...
    If you have found a good staff that you feel comfortable w/ at U of C then maybe you should just sick w/ them. Never feel like you have to stick w/ a doctor who you do not get a really good feeling about. Just try and find one that is a good match and knows that you want to be very agressive w/ your treatment! I hope that helped.
    Take care and good luck w/ your surgical consult!
  • spongebob
    spongebob Member Posts: 2,565 Member
    Mike -

    You have every reason to be frustrated - I would be pulling my hair out if I were you. Hopefully you will get this thing resolved and get on your life ASAP! Hang in there and know that I will keep you in my prayers.

    best regards

    - SpongeBob
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member

    When you refer to U of C, do you mean University of Chicago? That is where I had my two surgeries. Dr. Fabrizio Michelassi is the BEST! In fact, he did my liver resection, and the techs who did my CT scan commented what a great job he did on his technique. Anyway, they're the best, you're in good hands!

    Keep us all informed,