Familial GI Cancers Unit

Resources - Books

Digestion

• What Happens to Your Food? Smith A. Usborne Publishing Ltd, London , UK , 1997

• I Know Where My Food Goes. Maynard J. Candlewick Press, Cambridge , MA , 1998

• The Organ Wise Guys. Lombardo M. Wellness Incorporated, Duluth , GA , 1996

Family Tree

• Me And My Family Tree. Sweeney J. Crown Publishers, Inc, New York , 1999

• The Family Tree Detective. Douglas A. Greey de Pencier Books Inc, Toronto , 1999

Feelings

• Liking Myself. Palmer P. Impact Publishers, San Luis Obispo , CA , 1977

• Let's Talk About Being Afraid. Johnston M. The Rozen Publishing Group, Inc, New York , 1998

• Why Am I Different? Simon N. Albert Whitman & Company, Morton Grove , IL , 1976

• Aarvy Aardvark Finds Hope. O'Toole D. Mountain Rainbow Publications, Burnsville , NC , 1988

• When Something Terrible Happens. Heegaard M. Woodland Press, Minneapolis , MN , 1991

• When Someone Has A Very Serious Illness. Heegaard M. Woodland Press, Minneapolis , MN , 1991

Fun Reading

• I Have To Go. Munsch R. Annick Press Ltd, Buffalo, NY, 1987

• Everyone Poops. Gomi T. Kane/Miller Book Publishers, Brooklyn, NY, 1993

Hospital

• Jessica's X-Ray. Zonta P. Firefly Books Ltd, Toronto, 2002

Loss

• When Someone Very Special Dies. Heegaard M. Woodland Press, Minneapolis, MN, 1988

• The Tenth Good Thing About Barney. Viorst J. Macmillan Publishing Company, New York, 1971

• Vanishing Cookies. Doing OK When A Parent Has Cancer. The Benjamin Family Foundation, Downsview, Canada, 1990

• Guardian Angels. Judd N. Harper Collins Publishers, Inc, New York, 2000

Your Body

• The Magic School Bus. Cole J. Scholastic Inc, New York, 1989

• Your Insides. Cole J. The Putnam & Grosset Group, New York, 1992

• Color Anatomy! Becker C. RGA Publishing Group, Inc, Los Angeles, CA, 1997

Your Genes

• Amazing Schemes Within Your Genes. Balkwill F, Rolph M. Harper Collins Publishers Ltd, Hammersmith, London , 1993 DNA Is Here To Stay. Balkwill F. Harper Collins Publishers Ltd, Hammersmith, London , 1992 Cells Are Us. Balkwill F. Carolrhoda Books Inc, Minneapolis , MN , 1993 Ingenious Genes. Baeuerle P A, Landa L. Barron's Educational Series,Inc, Hauppauge , NY, 1997

JP & You

We need to tell the difference between a condition with several juvenile polyps and a solitary juvenile polyp. Doctors do tests to find out if a patient has just one or two juvenile polyps or several juvenile polyps. Having one or two juvenile polyps usually doesn't cause any difficulties as you get older. In contrast, a patient with several juvenile polyps should be monitored by a specialist and will need further testing. This condition is called juvenile polyposis. This topic can be confusing for anyone. To understand your specific type of polyp condition, you should check with your doctor.

What is a Solitary Juvenile Polyp?
A solitary juvenile polyp is usually found in the colon and looks like a mushroom on a stalk.

You can see an example below of a solitary juvenile polyp in a five-year-old boy. This boy noticed rectal bleeding which was painless. Most children with a juvenile polyp may have painless rectal bleeding or the polyp coming through the rectum. Studies have not shown an increased risk in colon cancer in people with a solitary juvenile polyp.

What is Juvenile Polyposis?
Juvenile polyposis is a rare condition with multiple juvenile polyps in the gastrointestinal tract. The number of polyps needed to make the diagnosis of juvenile polyposis remains controversial. Most specialists agree that about 7 or more polyps are a reasonable cut-off. Doctors need to find out if a person has juvenile polyposis because patients have to be checked regularly.

Some patients with juvenile polyposis may be born with other problems, for example, heart problems.

What are the Symptoms of Juvenile Polyposis?
Children with juvenile polyposis usually develop rectal bleeding, anemia (a low red blood cell count), rectal prolapse, or protrusion of a polyp through the rectum. Rarely, juvenile polyposis can present during infancy with failure to gain weight, rectal bleeding, and diarrhea.

Do Polyps need to be removed?
If the polyps are causing problems such as bleeding they can usually be removed during colonoscopy. Most juvenile polyps can be removed by placing a snare (a wire) around the stalk of the polyp and pinching it tight.

To the right is an example of a juvenile polyp in the lower bowel of an eight-year-old girl with rectal bleeding. During colonoscopy, the wire was placed around the stalk and the polyp was safely removed. It does not hurt to have a polyp removed.

Is Juvenile Polyposis Inherited?
There is more than one form of juvenile polyposis. Sometimes more than one family member is affected. In other cases, there is just one family member with juvenile polyposis syndrome. In most cases there is a 50 per cent chance each child of an affected parent to have the disease gene.

Is there a Risk of Cancer?
Yes. Having juvenile polyposis does increase the chances of developing bowel cancer. Patients with juvenile polyposis may have a lifetime risk of colon cancer as high as 50 per cent.

How Should I be Monitored?
The screening recommendations include a colonoscopy beginning with symptoms or in early teens if no symptoms occur. The frequency of the colonoscopies is determined by the number of polyps but at least every three years once begun. Talk to your doctor to find out how often you should have colonoscopy.

Juvenile Polyposis and Kids
Some kids have of lots of polyps in their bowel. The polyps do not usually hurt but can cause some bleeding from the rectum. Tell your parents if you see bleeding on the toilet paper or in the toilet bowl. The best way to help keep you healthy is to check the polyps every two or three years. This is done with a colonoscope. Colonoscopy allows the doctor to see inside your bowel to make sure everything is fine.

Your Family Tree

Make YOUR FAMILY TREE

Your doctor or genetic counsellor will ask you and your parents about your family history. The genetic counsellor will also want to learn more about any illness in the family. This helps the doctors look after you in the best way possible. Let’s think of all the different names for people related to us:

• Brother, sister, twin, mother, father, grandmother, grandfather, uncle, aunt, cousin, niece, nephew.

The genetic counsellor draws a family “tree” to understand how everyone is related. The circles stand for girls and the squares stand for boys.

This is a sample tree created by one of our patients.

Exercise

Create your own family tree using our worksheet (20 KB pdf ) . You simply have to cut out the circles and squares and glue them on to a piece paper labelling your family members.

PJS & You

PJS (Peutz-Jeghers syndrome) is a condition where people can develop polyps in the intestine and freckling on the skin. The polyps in PJS grow mainly in the small bowel but can develop in the stomach and colon. The polyps look like a mushroom on a stalk.

Freckling occurs in most but not all people with PJS. The freckling occurs most often on the lips and inside of the mouth. You can ask your doctor about having freckles on your lips safely removed by a skin specialist. Sometimes, kids don't understand why the freckles develop, especially when there are lots of them on the lips. Removing them can make a big difference. Sometimes, freckling is seen on the hands, feet, and eyelids.

The polyps in PJS can cause problems in some people. Polyps can cause a blockage of the bowel. People usually have belly pain and may start vomiting. If you ever have these symptoms, you should be checked out right away by a doctor. Sometimes, polyps can bleed causing your red blood cell count (hemoglobin) to decrease. A low red blood cell count can make you feel tired. It is important to have a physical examination every year by your doctor.

Kids with PJS should be monitored by a specialist. Generally, colonoscopy is recommended when symptoms start or, if no symptoms occur, to begin in your teens. Generally, upper endoscopy and colonoscopy is recommended at least once every two years once started. In the future, tests such as capsule endoscopy will likely become available to check for polyps. This is a tiny capsule (the size of a large pill) which you can swallow. The capsule goes down into your stomach and through your intestines. The whole time the capsule is inside it is taking pictures of the lining of your intestines. This allows your doctor to review the film to check the number of polyps, to see where the polyps are, and to check the size of the polyps. This test is being studied in adults and kids