HNPCC

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TABLE OF CONTENTS
 
Introduction
What is Hereditary Nonpolyposis Colorectal Cancer (HNPCC)?
What are Polyps?
What is the Gastrointestinal Tract?
How is HNPCC Inherited?
DNA/Gene test for HNPCC
Why is Early Diagnosis Important?
Exam Guidelines for People at Risk
Exam Guidelines for People Who Have Had HNPCC Gene Testing
What are the Symptoms of HNPCC?
How is HNPCC Diagnosed?
What is the Treatment?
Sexual Function and Childbirth After Surgery
Follow-up Care After Surgery
Exam Guidelines for People With HNPCC Who Have Had Surgery
Support Groups for Individuals and Families
Resources
Publications
Glossary
Appendix: Guidelines for Early Detection of Cancer in People Not at Risk for HNPCC

 
INTRODUCTION

      This booklet is written for families who have been diagnosed with hereditary nonpolyposis colorectal cancer (HNPCC). The information provided is intended to add to, and is not a substitute for, discussions with doctors, nurses and other members of the health care team. We encourage you to read the entire booklet in the order in which it is written, since each section is built on information in preceding sections. We emphasize the need for regularly scheduled, thorough medical examinations for persons who already have had colorectal cancer. More important, relatives at risk for this condition need to have regular examinations beginning at an early age. Names of support groups and additional publications concerning this condition are found at the end of the booklet.


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WHAT IS HEREDITARY NONPOLYPOSIS COLORECTAL CANCER (HNPCC)?
 
      HNPCC is a condition in which the tendency to develop colon or rectal cancer is inherited (it is hereditary). Some of the genes (basic units of heredity) that cause HNPCC are known. Nonpolyposis means that colorectal cancer can occur when only a small number of polyps is present (or polyps are not present at all). In HNPCC, colorectal cancer occurs primarily on the right side of the colon (see diagram p. 3). Sometimes other cancers can occur in families with HNPCC. They include cancer of the uterus, ovary, stomach, urinary tract, small bowel, and bile ducts. Other names for HNPCC are Lynch syndrome and cancer family syndrome.
 
 
WHAT ARE POLYPS?
 
      Polyps are abnormal, mushroom-like growths. When found in the gastrointestinal tract, they occur most commonly inside the colon (large intestine, large bowel). Polyps vary in size from less than one-tenth of an inch to 1-2 inches. They may be so large as to block part of the intestine. In some people polyps may be inherited, while in others they are not inherited. Certain types of polyps can turn into colon cancer or rectal cancer.

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WHAT IS THE GASTROINTESTINAL TRACT?
 
      The gastrointestinal digestive tract is a hollow tube which begins at the mouth and ends at the anus. It has several parts including the esophagus, stomach, small intestine and colon (large intestine). Its total length is about 28 feet. The last 5-6 feet of the intestine is called the colon (large intestine, large bowel). The last 5 or 6 inches of the colon is the rectum. After food is digested, solid wastes move through the colon and rectum to the anus, where they are passed out of the body.
 

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HOW IS HNPCC INHERITED?
 
      People with HNPCC have a 50% chance of passing the HNPCC gene to each of their children (see diagram p. 5). The gene can be passed on even if the parent has had surgery to remove his or her own colon. Individuals who do not inherit the gene cannot pass it to their own children. The vast majority of individuals with HNPCC develop cancer.
 
      Some individuals with HNPCC do not have an affected parent. These individuals, who are the first to have the condition, are referred to as having a new mutation (newly altered gene). They can, however, pass this HNPCC gene to their children.
 
      Genetic counseling is available, and recommended, for individuals with HNPCC. Counseling services are available through genetics departments in many hospitals. Also it is recommended that HNPCC families contact local registries (see Resources p. 12) for access to resources and for help with identification of family members at risk.
 
 
IS THERE A BLOOD TEST (DNA OR GENE TEST) FOR HNPCC?
 
      Mutations (alterations) of one of four genes are now known to be responsible for most cases of HNPCC. These genes are called hMSH2 (on chromosome 2), hMLH1 (on chromosome 3), hPMSI (on chromosome 2), and hPMS2 (on chromosome 7). Other genes, presently undiscovered, may also cause HNPCC. Gene tests for HNPCC are available for selected individuals from families who have HNPCC. A family member with HNPCC should be tested first.

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  1. George Jones has colorectal cancer. His wife, Susan, is unaffected. They have three children, George, Jr., Stephen and Carol. All were at 50% risk of developing HNPCC. Subsequently, George, Jr. developed colorectal cancer and Carol developed uterine cancer.
     
  2. George, Jr., and his wife Connie have two children. Although both children had a 50% chance of inheriting the HNPCC gene, neither did.
     
  3. Stephen and his wife, Gloria have two children. Since Stephen is unaffected there was no risk of HNPCC to his children.
     
  4. Carol and Bill Smith have two children. Both had a 50% chance of inheriting the gene for HNPCC, and both subsequently developed colorectal cancer.

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WHY IS EARLY DIAGNOSIS IMPORTANT?
 
      Early diagnosis is important for early detection and prevention of cancer. Regular screening should start at the ages described in the exam guidelines below. When HNPCC is detected early, the chance of cure is much better. Furthermore, early and frequent examination might reassure a person that he or she does not have the disorder even though relatives do.
 
 
EXAM GUIDELINES FOR PEOPLE AT RISK
  1. Colonoscopy every 1-3 years starting by age 25 years or 5 to 10 years before the age of earliest colorectal cancer diagnosed in family.
     
  2. Annual hemoccult tests starting when colonoscopy begins.
     
  3. For women: endometrial screening with biopsy (consider vacuum curettage or Pipel biopsy) starting at age 25 and continuing annually.
     
  4. If polyps or cancer is found, surgery may be recommended.

EXAM GUIDELINES FOR PEOPLE WHO HAVE HAD HNPCC GENE TESTING
 
      If an individual has had HNPCC gene testing, the above guidelines may need to be changed.
 
      Persons with a positive HNPCC gene test (they have an HNPCC gene), should continue to follow these guidelines. In addition, other ways to prevent cancer, such as surgery, may be considered.
 
      Persons with a negative gene test (an HNPCC gene was not found), require careful evaluation by their doctor and a genetic counselor to determine the best screening guidelines to follow. At this time, the available gene tests cannot detect all HNPCC-causing genes.

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WHAT ARE THE SYMPTOMS OF HNPCC?
 
      Most patients develop polyps and cancer of the colon and rectum without symptoms. However, the following symptoms may occur:
  1. Bright red blood in the stool
  2. Diarrhea that is not the result of diet or flu
  3. A long period of constipation
  4. Crampy pain in the stomach region
  5. Persistent decrease in size of stool
  6. Frequent feeling of distention (or bloating) in the abdominal or bowel region
  7. Weight loss
  8. Unusual and continuing lack of energy
      It should be emphasized that there is no safety in simply waiting for symptoms to develop. It is vital that persons at risk make every effort to have examinations starting by age 25 or 5 to 10 years before the age of the earliest colorectal cancer diagnosed in the family, even if they do not have symptoms.

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HOW IS HNPCC DIAGNOSED?
 
      Persons at risk for HNPCC usually have a family history of two successive generations of colon cancer or at least one generation with colon cancer and one generation with polyps. Men and women at risk for HNPCC need examinations of the entire colon. Women at risk should also have yearly endometrial screening. Two tests, colonoscopy and barium enema, are available to tell whether polyps or cancer is present in the colon. For patients at risk for HNPCC, colonoscopy is the preferred method of screening.
  1. Colonoscopy is an examination by means of a flexible, lighted tube, slightly larger in diameter than an enema tube, that is inserted into the colon. Tiny amounts of tissue may be removed from any part of the colon for microscopic study during this procedure. Before a person undergoes a colonoscopy a sedative is given; many persons sleep through the whole procedure and feel little or no discomfort. During this procedure it is sometimes necessary for the doctor to insert some air into the colon. Occasionally, air will cause the same kind of discomfort as a gas pain.
     
  2. Barium enema is a test in which a white liquid called barium is inserted as an enema into the colon. This test allows the colon to be outlined when an x-ray picture is taken. If polyps are present they can be seen on the x-ray. The barium enema feels much like an ordinary enema, causing a feeling of fullness. This test should not be performed on pregnant women because of the risk of x-rays to the fetus.
      For both of these tests of the colon, the patient must undergo a preparation before examination. The preparation, which includes a liquid diet and laxatives, clears stool from the colon so that all areas of the colon can be inspected. Exact instructions will be provided by the doctor before the examination.
 
      A blood test for the HNPCC gene will tell at-risk family members if they have inherited the gene mutation identified in the family. However, gene tests do not reveal the presence of polyps or cancer.

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WHAT IS THE TREATMENT?
 
      If a polyp is found, removal through the colonoscope may be sufficient, although surgery may be recommended for some patients. If cancer is found at examination, the doctor will recommend colon surgery. Removing the entire colon is the only way to completely prevent the development of colon cancer or to treat existing cancer.
 
      Several different operations are currently available for treatment of HNPCC. The three most commonly performed operations are total colectomy with: 1) ileorectal anastomosis, 2) ileoanal pull-through (pouch procedure), or 3) ileostomy. All three operations involve removal of all or most of the colon. After a complete discussion of these operations, the patient and surgeon together can decide which one is best. Women with HNPCC may also consider surgical removal of the uterus, ovaries, and Fallopian tubes.
 
      In some cases, after colon removal, a person may have an ileostomy. An ileostomy is an opening on the abdomen through which stool leaves the body An ileostomy can be temporary or permanent. In most cases it is necessary to wear an appliance called an ileostomy bag to collect body wastes.
 
      An ileostomy should not be considered a handicap, although it is an inconvenience. With proper care, there should be no odor or uncleanliness. Thousands of people of every age and of both sexes have had ileostomy surgery. After surgery, people can be just as busy, successful, and involved in daily routines as before surgery; in fact, they may be more active because of improved health.
 
 
SEXUAL FUNCTION AND CHILDBIRTH AFTER SURGERY
 
      Sexual function is not impaired after surgery or ileostomy. It is important that both marital partners understand the surgery, by talking with the surgeon or the family physician. There is usually no need for change in established sex practices or in one s capacity to enjoy sexual intercourse. It is also possible to have successful pregnancies. However, a woman who plans to become pregnant should consult her physician before becoming pregnant. Physicians usually recommend that a woman wait about a year after a colon operation before becoming pregnant. This delay gives plenty of time for abdominal scars to heal soundly and for the woman's health to return to normal. An ileostomy should not harm the baby or endanger the mother during childbirth.

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FOLLOW-UP CARE AFTER SURGERY
 
      Early diagnosis of HNPCC in many patients has led to early surgery, resulting in prevention or cure of colon cancer and increased life span. However, other complications of this hereditary condition may still occur. For example, individuals with HNPCC appear to be at an increased risk for cancer of the endometrium (uterus), ovary, stomach, urinary tract, small bowel, and bile ducts. If you have had surgery for HNPCC, follow the guidelines below.
 
 
EXAM GUIDELINES FOR PEOPLE WITH HNPCC WHO HAVE HAD SURGERY
  1. Sigmoidoscopy every year (depending on type of surgery).
     
  2. Annual hemoccult test.
     
  3. Annual physical exam.
     
  4. For women: annual gynecological exam, including endometrial screening with biopsy (consider vacuum curettage or Pipel biopsy).

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SUPPORT GROUPS FOR INDIVIDUALS AND FAMILIES
  1. IMPACC
    (Intestinal Multiple Polyposis And Colorectal Cancer)
    Mrs. Ann Fagan, Administrator
    P.O. Box 11
    Conyngham, Pennsylvania 18219
    (717) 459-1200
     
    Assistant Administrators:
     

    Mr. Ronald Droll
    1608 Second Street, N.E.
    Minneapolis, Minnesota 55413
    (612) 789-6704

    Mrs. Jane Jackson
    1378 Oliver Rd.
    Haughton, LA 71037
    (318) 949-4348


    A support group for families with hereditary colon cancer or familial Adenomatous polyposis (FAP).
     
     
  2. UNITED OSTOMY ASSOCIATION, INC.
    National Headquarters
    36 Executive Park
    Suite 120
    Irvine, California 92714
    (714) 660-8624
     
    The United Ostomy Association is a national organization of individuals with ostomies who work together for the benefit of all. More than 500 chapters are made up of ostomates whose goal is to provide mutual aid, moral support, and education to those who have had colostomy or ileostomy surgery. Individuals who have undergone this surgery may want to take the training course offered by the Ostomy Association so that they might help others who have had a similar operation. Check the telephone directory for your local chapter.

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RESOURCES
  1. THE AMERICAN CANCER SOCIETY
    National Headquarters
    1599 Clifton Road, N.E.
    Atlanta, Georgia 30329
    (404) 320-3333
    1 -800-ACS-2345
     
    The ACS can offer assistance if cancer should occur. Check the telephone directory for your local chapter.
     
     
  2. STATE VOCATIONAL REHABILITATION SERVICE
     
    This service offers training for another vocation if one should be physically unable to return to the same kind of work performed prior to surgery. Check your telephone directory for your state services.
     
     
  3. NEWSLETTER: HEREDITARY COLON CANCER
     
    The NEWSLETTER is a quarterly publication, established in 1984. It deals with hereditary colon cancer and polyposis and is free to all individuals with these conditions and their families. The NEWSLETTER welcomes articles and letters from patients, their families, and professionals. Articles concerning new research and treatments are welcome. This publication may be obtained by contacting:
     
      The Coordinator
      Hereditary Cancer Registry
      University of Texas M.D. Anderson Cancer Center
      Box 78
      1515 Holcombe Boulevard
      Houston, Texas 77030
      Phone (713) 792-2828

 
      4. HEREDITARY COLON CANCER REGISTRIES
Registries, located throughout the United States, Canada, and in some other countries, are listed once a year in the NEWSLETTER. You may contact them for the names of experts in the management of colon cancer. Registries can also help to identify relatives at risk for the disorder. Further information concerning Hereditary Colon Cancer Registries may be obtained by contacting:
 
    Coordinator
    Hereditary Colorectal Cancer Registry
    The Johns Hopkins Hospital
    550 North Broadway, Suite 108
    Baltimore, Maryland 21 205-2011
    Phone (410) 955-3875
    Fax (410) 614-9544

      5. CANCER INFORMATION SERVICE (CIS)
          Toll Free: 1-800-4-CANCER
    The Cancer Information Service is a national toll-free telephone inquiry system that provides information about cancer and cancer-related resources to the general public, patients and their families, as well as health professionals. Most CIS offices are associated with Comprehensive Cancer Centers or community hospitals. CIS offices provide support, understanding and rapid access to the latest information, as well as referral to local services and resources. They do not diagnose or recommend treatment for individuals. Telephone information may be supplemented by printed materials. All calls are kept confidential, and individuals do not need to give their name.

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PUBLICATIONS
 
      Contact the suppliers of the publications listed below for prices and/or mailing charges before ordering.
  • The Pelvic Pouch Procedure at the Toronto General Hospital, K. Forrest-Witkowski. Polyposis Registry, Toronto General Hospital, 200 Elizabeth Street, EC 10-315, Toronto, Ontario, M5G 2C4 Canada.
     
  • Ileal Pouch Pull-Through, Lee Elton Smith, M.D. The George Washington University Medical Center, Division of Colon and Rectal Surgery, 2150 Pennsylvania Avenue, N.W., Washington, D.C. 20037.
     
  • Ileoanal Reservoir: A Patient Resource, Bonnie Sue Rolstad, R.N.,B.A.,E.T. Upjohn, Co., Surgical Specialty Unit, Kalamazoo, Michigan 49001. This booklet is available in English, French and Spanish.
     
  • Taking Time: Support for People with Cancer and the People Who Care about Them. National Cancer Institute, 9000 Rockville Pike, Bethesda, Maryland 20892. Call 1-800-4-CANCER to order.
     
  • What You Need to Know about Cancer of the Colon and Rectum, National Cancer Institute, 9000 Rockville Pike, Bethesda, Maryland 20892. Call 1-800-4-CANCER to order.
     
  • Understanding DNA Testing: A Basic Guide for Families, National Center for Education in Maternal and Child Health, 38th and R St., NW., Washington, D.C. 20057.

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GLOSSARY
    Adenoma - A benign polyp that may be precancerous.
     
    Anus - Outlet of the rectum.
     
    At risk - A person at risk has the possibility of developing the condition which is present in his/her family.
     
    Barium enema - A test in which a chalky liquid which is resistant to x-rays is inserted into the large intestine, making it visible on x-ray film and permitting the doctor to see any defects, obstructions or masses.
     
    Biopsy - Removal of a small bit of tissue for examination under the microscope.
     
    CAT scan - (Computerized Axial Tomography) - a form of x-ray that shows the size and shape of body organs layer by layer.
     
    Cecum - The first part of the large intestine (colon).
     
    Chromosome - The carrier of the genetic material of a cell (genes). The normal num-ber of chromosomes in a human cell is 46 (23 pairs).
     
    Colectomy - The surgical removal of the colon (large intestine).
     
    Colon - (Large intestine, large bowel), The last portion of the intestine. It comprises the cecum, ascending colon, transverse colon, descending colon and sigmoid colon, and is 5-6 feet in length.
     
    Colonoscopy - A test in which a flexible tube, about 5 feet in length, is used to exam-ine the inside of the entire colon. The tube has a light source, a magnifying eye-piece, and an open channel through which air can be passed and a biopsy taken.
     
    DNA - (DeoxyriboNucleic Acid). The molecule that contains the code for the genetic blueprint. It is found in the nucleus of cells.
     
    Duodenum - The first part of the small intestine. It is 12-15 inches in length.
     
    Endometrium - The mucous membrane comprising the inner layer of the uterine wall.
     
    Esophagogastroduodenoscopy (EGD, Upper Endoscopy) - A test in which a flexible tube is used to examine the interior of the upper GI tract (esophagus, stomach, and duodenum). The tube has a light source, a magnifying eyepiece, and an open channel through which a biopsy can be taken.
     
    ET - Enterostomal Therapist; a specialist, often a nurse, who assists individuals who wear an external abdominal appliance to collect body waste.
     
    FAP (Familial adenomatous polyposis) - An inherited disorder of the gastrointestinal tract in which there are 100 or more precancerous polyps.
     
    Flexible sigmoidoscopy - A test in which a flexible tube about 2 1/2 feet in length is used to examine the rectum and lower part of the large bowel. The tube has a light source, a magnifying eyepiece, and an open channel through which air can be passed and a biopsy taken.
     
    GI (gastrointestinal) tract - The digestive system, consists of the esophagus, stomach, small intestine (22-25 feet in length), and large intestine (5-6 feet in length).
     
    Gene - The basic unit of heredity, each one occupying a certain place on a chromosome.
     
    Hemoccult test - A test using specially treated cardboard slides to check for hidden blood in the stool.
     
    Hereditary - Genetically transmitted from parent to children.
     
    hMLH1, hMSH2, hPMS1, hPMS2 - The abbreviated names of the genes that, when abnormal, cause HNPCC. They are located on chromosomes 2, 3, and 7.
     
    HNPCC (Hereditary Nonpolyposis Colorectal Cancer) - A condition in which the tendency to develop colon or rectal cancer is inherited (it is hereditary).
     
    Hysterectomy - Surgical removal of the uterus.
     
    Ileoanal pull-through (pelvic pouch procedure, ileoanal anastomosis procedure) - An operation removing the colon and the lining of the rectum, leaving the underlying anal muscles, or sphincters. The last part of the small intestine is joined to the anus and an internal pelvic pouch is created.
     
    Ileorectal anastomosis - An operation that removes the colon and joins the last part of the small intestine (ileum) to the rectum.
     
    Ileostomy (proctocolectomy) - An operation that removes the colon, rectum, and anus. An opening is then made from the ileum through the abdominal wall.
     
    Ileum - The last part of the small intestine, 12-15 feet long.
     
    Jejunum - The middle part of the small intestine, 8-10 feet long.
     
    Karyotype - A picture of the chromosomes.
     
    Lynch Syndrome I & II - Another name for the inherited condition, HNPCC.
     
    Marker - A physical abnormality that may indicate the presence of, or may predict the future occurrence of a specific disorder in an individual.
     
    Metastasis - Spread of cancer by the lymphatics or bloodstream to other sites in the body.
     
    Mutation - A change in a gene which may result in a specific disorder.
     
    Ostomate - A person with an ileostomy (or colostomy).
     
    Pedigree - family tree; genealogy.
     
    Polyposis - See FAP above.
     
    Propositus/Proposita - (Proband; Index case). The first individual to be identified in a family that has a specific hereditary disorder.
     
    Salpingo-oophorectomy - Removal of the ovary and its Fallopian tube.
     
    Stoma - Artificially created opening in the abdomen.
     
    Syndrome - A collection of abnormal physical characteristics occurring in an individual (Example: Gardner syndrome with epidermoid cysts, osteomas, and sclerotic jaw lesions, in addition to polyposis).

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APPENDIX: GUIDELINES FOR EARLY DETECTION OF CANCER
                         IN PEOPLE NOT AT RISK FOR HNPCC
 
The American Cancer Society recommends the following guidelines for early detection of cancer in people without symptoms:
 
Age 20-40 Cancer-related checkup every 3 years

Should include the procedures listed below plus health counseling (such as tips on quitting cigarettes) and examinations for cancers of the thyroid, testes, prostate, oral region, ovaries, skin and lymph nodes. Some people are at higher risk for certain cancers and may need to have tests more frequently.
 

Breast
  • Exam by doctor every 3 years
  • Self-exam every month
  • One baseline breast x-ray (mammogram) by age 40

Higher risk for breast cancer: Personal or family history of breast cancer, never had children, first child after 30.
 

Female
Reproductive 
System
  • Pelvic exam every 1-3 years with PAP test. Includes women age 18 and over.
  • Pap test - after 3 initial negative tests 1 year apart, test should be done at the discretion of the physician, includes women who are, or who have been, sexually active, or have reached age 18.

Higher risk for cervical cancer: Early age at first intercourse, multiple sex partners.


 
Age 40 & over Cancer-related checkup every year

Should include the procedures listed below plus health counseling (such as tips on quitting cigarettes) and examinations for cancers of the thyroid, testes, prostate, oral region, ovaries, skin and lymph nodes. Some people are at higher risk for certain cancers and may need to have tests more frequently.
 

Breast
  • Exam by doctor every year
  • Self-exam every month
  • Breast x-ray (mammogram) every year after 50; between ages 40-49,  1 every 1-2 years

Higher risk for breast cancer: Personal or family history of breast cancer, never had children, first child after 30.
 

Female
Reproductive
System
  • Pelvic exam every year
  • Pap test - after 3 initial negative tests 1 year apart test should be done at the discretion of the physician
  • Endometrial tissue sample at menopause if at risk

Higher risk for cervical cancer: Early age at first intercourse,multiple sex partners.

Higher risk for endometrial cancer: Infertility, obesity, failure of ovulation, abnormal uterine bleeding, estrogen therapy.
 

Colon/
Rectum
For family members not at risk for HNPCC
  • Flexible sigmoidoscopy every 3-5 years based on advice of physician-age 50 and over
  • Hemoccult test every year-age 50 and over
  • Digital rectal exam every year-age 40 and over

Higher risk for colorectal cancer: Personal or family history of colon or rectal cancer, personal or family history of polyps in the colon or rectum, ulcerative colitis, and Crohn's disease of the large bowel.

The cancer-related checkup guidelines are not rules and only apply to people without symptoms


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If you have any of the Seven Warning Signals listed below, see your doctor or go to your clinic without delay
 
CANCER'S SEVEN WARNING SIGNALS
  1. Change in bowel or bladder habits
  2. A sore that does not heal
  3. Unusual bleeding or discharge
  4. Thickening or lump in breast or elsewhere
  5. Indigestion or difficulty in swallowing
  6. Obvious change in wart or mole
  7. Nagging cough or hoarseness

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      This booklet was prepared by the following members of The Johns Hopkins Hereditary Colorectal Cancer Registry in 1995: Judith A. Bacon, B.S., Susan Viles Booker, B.A., Jill D. Brensinger, M.S., Paul Celano, M.D., Donna Cox, M.Ed., Susan Cross-Skinner, R.N., M.S.N., Francis M. Giardiello, M.D., Pearl Campbell, B.S., Stanley R. Hamilton, M.D., Anne J. Krush, M.S., Gloria M. Petersen, Ph.D., Kathy Potter, R.N., Elias I. Traboulsi, M.D., and John Yardley, M.D.

      The gastrointestinal tract illustration on page 3 was reprinted with permission of Bonnie Sue Rolstad, R.N.,B.A.,E.T., from the booklet "Ileoanal Reservoir: A Patient Resource."

      We would like to thank Linda M. Welch for secretarial assistance, Theresa Berk, MS., for assistance in compiling the glossary, and Joanna Strayer Amberger, B.A. for technical assistance on the pedigree illustration, page 5.

      We would also like to thank the Clayton Fund, The Johns Hopkins Oncology Center's Community Programs and the Cancer Research Foundation of America for their support in the development of this booklet.

      To order copies of this booklet, please contact the Coordinator, The Johns Hopkins Hereditary Colorectal Cancer Registry, The Johns Hopkins Hospital, 550 North Broadway, Suite 108, Baltimore, MD 21205-2011, phone (410) 955-3875, fax (410) 614-9544.
 
© 1995 The Johns Hopkins University


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