Appendix Cancer

Babygreens381
Babygreens381 Member Posts: 3
in Colorectal Cancer #1
I am looking for others that have been diagnosed with Cancer Of the appendix or better known as a Goblet Cell Carcinoid. I have had a tough time finding information on this type of Cancer. I have completed Chemo and I am now cancer free but with this being such a rare form I would like to talk with others about there journey and what to expect now. Thank you for taking the time to talk.

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    I am an appendix cancer survivor
    I was diagnosed 4 years ago with mucinous adenocarcinoma, another tumor type. I didn't have goblet cell carcinoid. I had intraperitoneal chemo and systemic chemo. I'm doing great now.

    The best advice I can give you is that you must see one of the oncologists who specialize in appendix cancer. Most colorectal oncologists/surgeons don't know this cancer.

    There are groups on the web for appendix cancer - you need to seek those out, as much as there are similarities to colon cancer, we also face significant differences.

    Wishing you well,

    Alice
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    Hope this helps
    Some info from the Rare and Other Cancers section of the Discussion Boards.
    -phil
  • mmikesell
    mmikesell Member Posts: 8
    #4
    I also was diagnosed with Appendix Cancer
    About a year ago I had my appendix removed. Pathology stated it was "mucin with groups of tumor cells that have goblet cell and signet ring cell morphology." They also found 2 more tumors around the back of my abdomin that contained both, and had 5 lymph nodes that it had moved to. I completed my first (I'm guessing, won't be my last) folfox chemo at the end of January this year. I just got my labs back for my 6 months checkup and my CEA numbers have almost quadrupled from the normal 0-3 (from my lab) to almost 16. Going to see my oncologist this afternoon to talk. I'm out here looking for more info too.

    cheers! Mitch
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    #5
    abrub said:

    I am an appendix cancer survivor
    I was diagnosed 4 years ago with mucinous adenocarcinoma, another tumor type. I didn't have goblet cell carcinoid. I had intraperitoneal chemo and systemic chemo. I'm doing great now.

    The best advice I can give you is that you must see one of the oncologists who specialize in appendix cancer. Most colorectal oncologists/surgeons don't know this cancer.

    There are groups on the web for appendix cancer - you need to seek those out, as much as there are similarities to colon cancer, we also face significant differences.

    Wishing you well,

    Alice

    Questions Regarding AppendixColon Cancer
    Alice,
    You seem knowledgeable and I have been trying to find information on what to do to prevent reoccurrance. September, 2010 had surgery for colon cancer. Surgeon said huge mass in both the appendix and the right colon. He said he thought it started in the appendix and spread to the colon. I was cancer free following surgery with 5 of 20 nodes so advanced Stage 3. My surgeon also said he thinks it might have spread through the lymph system so I am worried about it spreading to distant places. On my 3 month post Folfox Treatment the Oncologist checked my neck and arm lymphnodes and said I should be checking for "funny bumps" . I think I am on a two year 3 month scans and blood tests.

    New to the Board but I will try to email you and ask more specific information. Thank you for being here to give hope to all of us who are just starting our journey.
    NB
  • abrub
    abrub Member Posts: 2,174 Member
    #6
    mmikesell said:

    I also was diagnosed with Appendix Cancer
    About a year ago I had my appendix removed. Pathology stated it was "mucin with groups of tumor cells that have goblet cell and signet ring cell morphology." They also found 2 more tumors around the back of my abdomin that contained both, and had 5 lymph nodes that it had moved to. I completed my first (I'm guessing, won't be my last) folfox chemo at the end of January this year. I just got my labs back for my 6 months checkup and my CEA numbers have almost quadrupled from the normal 0-3 (from my lab) to almost 16. Going to see my oncologist this afternoon to talk. I'm out here looking for more info too.

    cheers! Mitch

    Same advice: see a specialist
    Mitch, I can't emphasize enough how important it is to see someone who knows this cancer. Other oncologists use "best guess" where as the experts often use treatments that are outside the realm of regular or even most colorectal oncologists. If I'd gone with what the regular oncologists said (experts, but not in Appendix Cancer) I might well be dead by now, instead of in full remission.

    If your onc has not conferred with a specialist about your case, insist that he do so. Alternately, you can arrange to have records sent to one or more of the experts (I go to Dr. Paty at Memorial Sloan Kettering in NYC.)

    Good luck,

    Alice

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