Small bowel adenocarcinoma

Technically, I did not have colorectal cancer (mine is rare and groupless :( ) but it usually treated like colon cancer. I was diagnosed in 2009, had an emergency small bowel resection and then did six months of FOLFOX chemotherapy. Where are my peeps at?

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  • I had a sessile serrated adenoma removed about a year ago from my colon. Later was diagnosed with Lynch Syndrome (MSH2). But have a risk for small bowel cancers as well. Just wanted to say HI! to you as well. I'm newly diagnosed so any info you have will be welcome. Wondering if anyone else made bad first impressions on their gastro drs by being so young in their office. First gastro dr I went to yelled at me! Got a good one now though.
  • DMMDMM Community Member
    Melissa Tweed;601 said:
    I had a sessile serrated adenoma removed about a year ago from my colon. Later was diagnosed with Lynch Syndrome (MSH2). But have a risk for small bowel cancers as well. Just wanted to say HI! to you as well. I'm newly diagnosed so any info you have will be welcome. Wondering if anyone else made bad first impressions on their gastro drs by being so young in their office. First gastro dr I went to yelled at me! Got a good one now though.

    Hi Melissa!

    Colon cancer runs in my family (my dad and grandfather had it) and I had the genetic blood test done for Lynch Syndrome but I was negative. And the microsatellite instability test they did on my tumor showed everything to be stable so the tests say I don't have Lynch Syndrome. Small bowel cancer is actually my second cancer. I was diagnosed with endometrial cancer at age 25. So with the evidence that I had two cancers often seen in people with Lynch Syndrome, my new oncologist has decided to monitor me as if I do have Lynch Syndrome.

    As for yelling doctors.....I want to yell at my two old gastro docs. For 8 years I was told I had IBS and had to deal with constantly being uncomfortable with extreme abdominal bloating and often in very bad pain. They also both knew about my previous cancer history. I had colonscopies starting at age 30 and also had upper endoscopes done, they found nothing. Had they ordered a CT scan, they would have found the problem. My tumor was located in the jejunum (middle part of the small intestines) where no scope can reach. When the tumor was removed from my small intestines the "IBS" symptoms went away. Even during chemo I didn't have GI symptoms as bad as when I supposedly had "IBS". I am now a very disgruntled patient, hear me roar! ;-)

    I am definitely no expert on Lynch Syndrome but if you have any questions, feel free to ask.
  • As I understand it, Lynch Syndrome is new and they continually make new findings in that field. I too was dismissed as having IBS at a very young age. The symtoms were gone immediatly after my surgery. Figures huh. I have a genetic oncologist named Lisa Brown here in Florida who will give you free advise. Now I don't know if you need a dr referal or have to show up in person or what, but she was extremely knowledgable and helped me tons!
    Yea, this new issue in my life scares me a bit since I actually watched my Dad die and my Uncle passed from it later, but I'm determined to be the one Tweed that LIVES!
    Since I am new I don't know what questions I should be asking but feel free to let me know anything you learn!
  • DMMDMM Community Member
    Gotta love the catch all IBS diagnosis! Grrrr

    I am being followed at Duke University Medical and they have a Cancer Genetics department. I will eventually go for further testing, I haven't rushed it because at this point it doesn't make much difference because they can't really do anything except monitor me (which they are already doing) and the fact I am swimming in medical bills. I will eventually go for further testing later in the year.

    From what I know about Lynch Syndrome, is it is thought to have been brought over to the US by a German immigrant. So testing is usually recommended for people with a family history of colorectal, uterine and/or ovarian cancer and who are of German descent (which I have some on both sides). I was told my grandfather had colon cancer twice in his 40's but he didn't die of the disease. My father got diagnosed with metastatic colon cancer at age 43 and died at 46. The real shame was my father never went for a colonscopy, if he did when the doctor told him, he would have avoided colon cancer. As far as I know I am the only one to have had endometrial/uterine and small bowel cancer in the family (lucky me!). I don't think we have a family history of ovarian.

    Lynch Syndrome was identified in the mid-1960's and the terms Lynch Syndrome and HNPCC came about sometime in the mid-1980's. For people with HNPCC, they have about an 80% risk of developing colon cancer and women have a 60% chance of developing endometrial cancer. Women will usually develop endometrial cancer first before colon. The risk for ovarian cancer is 12%, stomach is 16%, other cancers 1-4%. But I have seen some variations in the %'s in various research articles. Some also state there is also an increased risk of developing skin, breast, pancreatic, brain, kidney and stomach cancer..pretty much everywhere else. I have stopped researching Lynch Syndrome awhile back. I am a total information junkie in general, and usually believe knowledge is power...but with cancer, after a certain point I think there is such a thing as too much information. LOL