Dear OncoLink "Ask The Experts,"
My 21-year-old son has been diagnosed with FAP. There is a strong family history from his father's side of the family. The doctor feels it would best to remove his entire colon and rectum which would involve a two-part surgery. This seems so uncertain involving the risk and not to mention the emotional fear. Please tell me what the normal treatment for such a condition is. We have been given 3-4 months to make a decision. There are two other siblings both have/are experiencing rectal bleeding ages 22 female and 18 male.
Carolyn Vachani RN, MSN, AOCN, OncoLink's Medical Correspondent, responds:
Unfortunately, patients with FAP have virtually a 100% chance of developing colon cancer. Several studies have looked at using medications to cause polyps to regress and prevent new ones from forming. These studies have had some affect on shrinking existing polyps, but weren't able to prevent new ones. Currently, the only effective treatment is removal of the colon, which is particularly hard to accept when the person is healthy.
Accepting the need for surgery is often the most difficult obstacle to overcome. You may want to find a surgeon who has performed this surgery in the past. Perhaps your genetic counselor or the physician who performed the genetic testing can refer you and your son to a family that has already had the surgery.
You may find this article and website helpful:
Jan 6, 2012 - There is an association between an increase in the degree of germline allele-specific expression of the adenomatous polyposis coli gene and the risk of common forms of colorectal cancer, according to a study published in the January issue of Gastroenterology.