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From Our Perspective



In this section of the newsletter we will share personal stories of people with hereditary forms of colon cancer and polyps. We welcome stories regarding your experiences-positive or negative- dealing with your condition or that of a family member and effects on daily life. Many families have never had the opportunity to meet another family that has been diagnosed with FAP or PJS or HNPCC, so please use this forum to express your thoughts and feelings.

Please send any stories that you would like to share to:

From Our Perspective
c/o Beatty Watts, M.S.
The University of Texas
M. D. Anderson Cancer Center, Box 243
1515 Holcombe Blvd.
Houston, TX 77030


Vocabulary

Ileostomy:
A procedure in which the small intestine is brought to the surface of the abdomen and an opening is created for the removal of waste. This is done after someone has had surgery to remove his or her colon and rectum.

Ileorectal anastomosis:
A procedure in which the colon is removed and the small intestine is attached to the rectum.

  My experience with the FAP chemoprevention study.
 

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