Appendix- small carcinoid found after appendectomy, now what?

kellyw
kellyw Member Posts: 1
edited September 2012 in Rare and Other Cancers #1
Hello everyone!

A little over two weeks ago, I went into the ER with appendicitis and had an appendectomy 5 hours later. I am 27 years old, and up to now had been healthy and active.

During the surgical pathology report, the lab found a small 2mm carcinoid. My surgeon- who happened to be a surgical oncologist- requested that they look at the sample for any lymph nodes to test. The lab found only one and it was negative. The Ki67 was 2% I feel really blessed to had appendicitis, and from everything I have read, it looks like the chances of metastasis are extremely low- but it looks like there is a pretty good chance that I may have or might have in the future more of these neuroendocrine carcinoids. My AST and ALT liver function tests were elevated and I am concerned.

The surgical oncologist has referred me to see a Gastroenterologist to have a colonoscopy and also a capsule endoscopy to look for other primary tumors.

I read some research about the tests, Chromogranin A, neurokinin a, and urinary 5IAA and asked if this is something we should look at, but he doesn't want to run these tests unless something else comes out of the colonoscopy. Unfortunately this doctor doesn't seem to have much knowledge about carcinoid, and even told me this was not a cancerous tumor at first. I have had some symptoms of carcinoid syndrome, but nothing severe and I thought this was my "normal" but now everything seems different. Lots of questions...

I feel like these are such seemingly non-invasive tests and am going to try and find another doctor in the DC/MD/VA area that has more of a knowledge about these. The carcinoid.org site has a couple doctors at Johns Hopkins listed but if any one has recommendations, I would greatly appreciate them.

Thank you all for any thoughts or advice.

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Once we see the word
    Once we see the word "Appendix" you need an appendix cancer expert. Dr. Sardi at Mercy, Dr. Sugarbaker in DC, are a couple of the experts in your area. To date, there is no Appendix Cancer expert at Johns Hopkins.

    You can find lots of information and support on the PMP-Appendix Cancer support group on FB. We're not all PMP (I'm not, I was mucinous adenocarcinoma of the appendix) and I know that there are a few Appendix Carcinoids there who have been through this all.

    Wishing you well,
    Alice

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