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Familial Adenomatous Polyposis (Hereditary Colon Cancer)

by lildarlin88, May 22, 2009 05:13PM
I am a 21 year old female who was diagnosed with FAP when I was 11 or 12 years old.  I had a colonoscopy done because my mother died of colon cancer.  When they performed the test, they found I had quite a few pre-cancerous and cancerous cells.  About one year after these tests were performed, my doctor decided that I should have a surgery to remove the cells.  Instead, they had to remove my whole large intestine...I had a colostomy for 2 months...I was 13 years old.  I had tests performed on my esophagous and stomach.  They found polyps in both but never did surgery.  I had bad heartburn before my surgeries and after my surgeries it was gone.  I have not been able to have these tests performed in 5 years to due insurance.  I am also starting to show other signs that I am worried about.  Such as, the inability to eat a full meal, feeling like I am full after a few bites...and I am drained all the time.  Could these be signs of cancer?...or is it just the polyps aggravating me because they are either increasing in size, or multiplying?  I really need help with this because I am really scared that I may be sick.  Please help if you can.
Member Comments (1)

by mammo, Jun 18, 2009 01:25PM
To: lildarlin88
Hi, I have had 5 people in my family diagnosed with FAP.  Four of which have passed away.  The most recent was my son at 31, and then his son at 18.  My boys were diagnosed at the age of 12 & 16 (deceased).  Colon cancer did not take my son and grandson, but rather a Desmoid Tumor in their abdomen, as you know this can be part of the disease.  My youngest who was diagnosed at 12, is a very healthy 38 year old today, although he does a a few polyps in his duodenum which they are watching.  Although it is rare for these to become malignant, it does happen.  My son is checked yearly.  I have studied this disease for many years, and am constantly learning.  You really need to find a way to get your tests, this is not something you can ignore.  What is the problem with your insurance?  I have helped people get all types of testing covered by their insurance.  If you don't have insurance, are you eligible for a medical card through Medicaid?  Is there a clinic in your town you can go to?  If all else fails, I'm sure you could find a GI doctor who would work something out with you knowing the seriousness of this.  Please let me know if I can be of any help, or if you just want to talk.
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