Hereditary colon cancer gene

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shelloz1
shelloz1 Member Posts: 405

I had BC almost 5 years ago, now I have been told that I have the Hereditary Colon cancer gene.

Can anyone tell me, what does this mean?  Is there anything I should be doing to be proactive?  Is there any screening recommended (other than Colonoscopy)?

 Thanks

Shelley

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  • alligans
    alligans Member Posts: 175
    edited July 2011

    Which one do you have?  There are 2 Lynch/HNPCC and FAP/familial adenomatous polyposis? 

    With Lynch you have an 80% chance of developing colon cancer as well as a large change of developing other adenocarcinomas - gastric, esophogeal, entometrial, and renal pelvis are the ones that immediately come to mind.  With Lynch you do not have the enormous amount of polyps that is seen with FAP.  I'm not as familiar with FAP but with FAP you develop hundreds to thousands of polyps (both benign and possibly malignant) in your colon.  I do not know if FAP puts you at a higher risk for other cancers.

    A diagnosis of Lynch comes with many yearly exams (mammogram, vaginal ultrasound, colonoscopy, etc.).  The colonoscopy and transvaginal ultrasound are a yearly must!  Have you had a colonoscopy yet?  If not you should.  People with Lynch tend to devlop colon cancer a lot younger than those without Lynch.  I  believe with Lynch it is common to have colon cancer under 40.  Lynch associated colon cancers tend devlop and metastasize a lot faster, be more agressive tumors that are flat and located on the right side of the colon (thus the need for a full colonoscopy and not a sigmoidoscopy) but can also be in the shape of a polyp and devlope in other areas of the colon.  The good news is that Lynch cancers tend to react a lot better to colon cancer chemotherapy.  With colon cancer, stage 1 and I believe stage 2 are treated with surgery alone.  Stage 3 and 4 get chemotherapy and if possible surgery.  The most common colon cancer chemotherapy treatments are FOLFOX6, FOLFOX4, and FOLFIRI.  A couple of these chemo drugs are also used to treat stage 4 breast cancer (Xeloda, 5-FU, oxaliplatin).  Stage 4 colon cancers are also commonly treated with the above chemo drugs as well as Avastin.

    You may find this place useful.  I would often visit this board when my dad was in treatment for colon cancer.  Just be forewarned, the people on this board may not be as nice as the ones on this message board.  I found that board to be very clicky but I did learn a lot about my dad's disease.   

     http://coloncancersupport.colonclub.com/viewforum.php?f=1

    There are a bunch of people who have Lynch on that board.

    If you have any siblings you may want to have them tested or at least get an immediate colonoscopy.  You may not want to have your children tested for insurance coverage purposes later on in life but they should get a colonoscopy by age 20.  Both of these genetic mutations can be hereditary in an autosomal dominant way (only 1 bad gene necessary from one parent) but it can also be a sporadic mutation (you are the first in your family to have it but you have a 50% chance of passing it on to your children regardless of whether or not your partner has the genetic mutation).

    People who have gotten the Lynch mutation from a parent tend to have many cancers within their family...especially colon, gastric, upper GI, and endometrial.  They tend to be diagnosed with these cancers at an earlier than expected age.

    Have you spoken to a genetic counselor yet? 

  • shelloz1
    shelloz1 Member Posts: 405
    edited July 2011

    Hi Alligans,

    Thank you for posting.  The gene is  APC I11307TK, and I understand from someone who responded to my posting (on another link) that this is a very common gene.  But I do remember them mentioing the term HNPCC.

     Shelley

  • alligans
    alligans Member Posts: 175
    edited July 2011

    I just read about this gene and it's associated with FAP, not Lynch.  I'm sorry I can't help you more with FAP.  I'm more familiar with Lynch because I was worried that my dad had it.

    Do you have an oncologist specializing in the GI tract? 

    These links may be of some help. 

    http://en.wikipedia.org/wiki/Adenomatous_polyposis_coli

    http://en.wikipedia.org/wiki/Familial_adenomatous_polyposis

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