My name is Kim. I am 27 years old and have FAP.
I belong to the fourth generation of my family to have this disease.
Currently, my mother, my aunt, my cousin, and I are all affected.
My mother had rectal cancer in 1996 and has an ileostomy. My aunt
has an ileorectal anastomosis that she received in 1995. My cousin,
age 27, has not had an exam in four years and continues to do
nothing.
My story is different. After my mother and aunt
were diagnosed, their doctors were concerned for their children.
Although my cousin and I are the only ones affected, there are
a total of five children in my generation. After an initial scope
by my regular gastroenterologist, I was referred to a specialist.
Over the next several years, I had semiannual colonoscopies and
my doctor kept a close eye on me.
In November 1997, I was approached about joining
the Celecoxib drug trials. I immediately agreed. Many friends
and some family members asked "Why?" Participating in the study
would mean additional colonoscopies, questionnaires, and of course,
the drug regimen. None of this mattered. When I realized that
surgery was inevitable for me, I saw (and still see) drug trial
research studies as a way to possibly extend the time before surgery,
and maybe even eliminate surgery. The study was a placebo-control
study, so I did not know whether I would be given the placebo
or the drug, and at this time we still don't know the effectiveness
of this drug in preventing or reducing polyps. I knew realistically
that I would have a colectomy before the age of 35. So knowing
this, I did not see the drug trials were not an inconvenience
or a burden.
As it turned out, I finished the drug trial in
May 1998 and had an abdominal colectomy in January 1999. I now
have an ileorectal anastomosis and am doing well. I still have
some polyps and will continue to be watched by M. D. Anderson.
As I wait anxiously to learn of the Celecoxib study results and
even though I no longer have my colon, I do not feel that the
trial was a waste. Instead I feel now as I did then, privileged
to have the opportunity to help myself and science.
Kim