NED??? Confused....

Shoda
Shoda Member Posts: 12
edited March 2014 in Colorectal Cancer #1
Apr 05 emergency surgery for blockage, dx Stage III cancer, 2/27 lymph nodes positive. Large colon removed and immediately reconnected. 6 mos. chemo completed in Nov 05, April 06 all tests clear and CEA 3.3, bowel movements pretty normal (depending on what I eat). Since finishing chemo, have been mildly troubled with the odd abdominal cramp and persistant dull ache behind the stomach. Oncologist thinks it is just reaction to chemo causing excess stomach acid etc. Has declared me in remission and discharged me back to family physician indicating to me he has truly sick patients who need his care. I am wondering about the possibility the cancer could have spread to the pancreas in spite of the fact this is not the normal way for colon cancer to act. Have appt with my family physician for Tuesday hopefully to start a new round of tests. Anyone else with prolonged side effects of chemo like this or am I panicking for nothing? Your thoughts appreciated.

Comments

  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #2
    That is kindof odd because you should be followed by an oncologist for the next 5 years at least. I suppose your family physician can order the normal tests and if anything arises you can return to the oncologist - although I would go to a different one I think, if I were you. Anyway, if the tests in April were clear that is a good sign. CEA varies from person to person and although it may be very helpful for some, other tumors do not produce alot of change in CEA. The normal protocol is to get retested for CEA and get a chest/abdomen/pelvis CT every 3 months at first, then every 4 months. After 2 years it drops to every 6 months and then yearly after 5 years. I would certainly make sure to get re-tested in July.
    As for the pain it is hard to say what is going on. I had my sigmoid colon resection back in 2002. I have pretty normal bowel movements, but I get much worse gas than before and some days my stomach hurts alot. I get more heartburn than before too. I don't think the pancreas is a normal place for CC to spread but (I think) if there was something going on in the pancreas it would show up on your CT. I would ask your FP about it and get re-checked in July.
    Good luck to you,
    Susan.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    shmurciakova said:

    That is kindof odd because you should be followed by an oncologist for the next 5 years at least. I suppose your family physician can order the normal tests and if anything arises you can return to the oncologist - although I would go to a different one I think, if I were you. Anyway, if the tests in April were clear that is a good sign. CEA varies from person to person and although it may be very helpful for some, other tumors do not produce alot of change in CEA. The normal protocol is to get retested for CEA and get a chest/abdomen/pelvis CT every 3 months at first, then every 4 months. After 2 years it drops to every 6 months and then yearly after 5 years. I would certainly make sure to get re-tested in July.
    As for the pain it is hard to say what is going on. I had my sigmoid colon resection back in 2002. I have pretty normal bowel movements, but I get much worse gas than before and some days my stomach hurts alot. I get more heartburn than before too. I don't think the pancreas is a normal place for CC to spread but (I think) if there was something going on in the pancreas it would show up on your CT. I would ask your FP about it and get re-checked in July.
    Good luck to you,
    Susan.

    Hi - I am pretty stunnded about your oncologist "booting" you back to your family physician. That is really not normal. Not to scare you but at this early point you need to be followed actively by an oncologist who just keeps your family physician up to date. But the oncologist should be the primary care physician when it comes to your cancer.

    So, if I were you I would find a new oncologist. Like Susan says, CEA is not always a helpful marker. Mine has been at 0.5 since right after my colon surgery even though at that time I had metastatic liver disease. You should have regular CT's for quite a while and these should be a done at a facility where the interpretations are trusted by your oncologist. (Any facility with the equipment can take the pictures - it's all in the interpretation and so you want these tests done at some place trusted by an oncologist whom you trust.)

    Good luck with your family physician. Maybe he/she has a recommendation for another oncologist. I think any family physician / internist who is any good at all would also believe that you should be under regular care by an oncologist.

    Wish you luck, and NED is great. Hopefully the pain means nothing - CRC does not normally spread to pancreas and surely CT would pick it up if it did.

    Good luck,
    Betsy
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Hmmm... I don't want to be a ney-sayer to my friends here nor do I want to scare you, BUT... certain types of colon cancer do tend to spread to the pancreas. HNPCC (aka "Lynch Syndrome") is known to met to the pancreas, digestive organs, reproductive organs in women, and breast.

    Pain is your body's way of telling you something is out of kilter. A CT and or PET scan might help unlock the mystery.

    I experienced a bit of discomfort for about a year due to the "rehook". Discomfort and excessive "music" is not uncommon.

    I would suggest you consult with an oncologist for the next five years or so. Nothing against your GP, but they aren't always as schooled in cancer as one who specializes in it and may not have seen some of the subtle indices that an "expert" would pick up on.

    Be well.

    - SpongeBob
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #5
    It does not seem right to me that the doctor just dismissed the pain. I would insist on further tests to make sure that there is nothing more going on. All the best to you and God Bless.
  • jana11
    jana11 Member Posts: 705
    #6
    I agree with everyone! Holy cow!! YOu need a second opinion. You need follow up for at least 5 years. How often are you getting scanned?

    Is your doctor crazy? I am a family doctor and I would be blown away if an oncologist sent me someone with stage 3 cancer less than 1 year from original diagnosis. (and I provide care to the indigent population, without insurance!)

    HMMMM

    FYI - you have sooooo many reasons for abd discomfort. Just the surgery can cause adhesions (scar tissue) to form that can hurt at times. It is not common to go to the pancrease, but never say never in medicine. YOu need reassurance and other testing to be done.

    Try to get to another doc. Ask your FP for a new referral. You are a cancer survivor. If you are panicking, it is NEVER for nothing!! YOu are entitled to panick over anything, at any time!!! YOu earned the right!

    Good luck to you. jana
  • jenalynet
    jenalynet Member Posts: 361 Member
    #7
    I agree with everyone..Please seek another oncologist.. Audrey
  • terril
    terril Member Posts: 296
    #8
    This onc seems goofy. I have never heard of a onc saying this. Time to give him the boot. Go for a second opinion. Go for a new doctor.

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