How will I know if I have FAP?
Common symptoms are:
abdominal pain and/or weight loss
These symptoms are a warning sign indicating
the need for bowel examination. Unfortunately, by the time such
symptoms occur, a cancer may already have been diagnosed. This may
happen when there is just one affected person in the family. Most
adolescents in an affected family have NO symptoms at all, only
their awareness of the family history of FAP.
Today, we know that symptoms can occur outside
the bowel and these may develop years before the formation of any
adenomas. An affected parent may have associated symptoms while
an affected son or daughter may not. The following description is
intended only as a reference.
Some people with FAP have a tendency to produce
extra tissue in the form of a harmless skin cyst on the scalp, face,
arms, or legs. Such cysts are extremely rare in childhood and are
strongly associated with FAP. Skin cysts may recur and can be removed,
only if necessary, by a specialist to minimize scarring.
Extra tissue may appear as a harmless bony
growth in the jaw and, occasionally, a dentist may detect bony growths
on a panorex x-ray which gives an all-around view of the upper and
lower jaw. Extra sets of tiny, incompletely formed teeth may be
another feature. Bony growths may also form on the skull. This may
provide another clue to FAP and the need for bowel investigation.
About 10% of people with FAP may develop
abnormal bands of tissue called a DESMOID, a benign lesion, most
commonly within the wall or lining of the abdomen, and less commonly
in the thigh, shoulder, or spine. Due to their complex nature, treatment
for a desmoid requires careful evaluation for the appropriate medical
or surgical care. In general, surgery is not recommended for desmoids
within the lining of the abdomen. The most common method of measuring
even slight variations in a desmoid is by a sophisticated x-ray
called computerized axial tomography, or CAT-scan, which shows the
size and shape of the desmoid, layer by layer.