Support Groups and Programs
Leeds Castle Polyposis Group
In 1985, 11 FAP Registries met in an actual castle in Kent, England, and formed an international group, the Leeds Castle Polyposis Group. Dedicated doctors and researchers were looking for ways to improve the quality of life for patients and their families. The challenge of treating some of the associated growths of FAP was the impetus for this unique body which was to meet every two years. By 1993, it had swelled to 53 members from 21 countries who assembled in Copenhagen, Denmark, for the first time since the discovery of the FAP gene in August 1991.
Several areas were highlighted, for example, the treatment of noncancerous locally invasive tumours called desmoids, which may occur within the abdomen or abdominal wall about 1-3 years after colectomy. Studies have shown that up to 12 percent of patients may develop a desmoid. Many women may be unaware that desmoids are stimulated by hormones and often affect women, particularly after childbirth. For a woman who already has a desmoid and becomes pregnant, the tumour tends to enlarge and can create problems. Occasionally, a desmoid may develop prior to surgery. It is important to have an abdominal x-ray called a CAT-scan to rule out the presence of a desmoid when deciding on the type of bowel operation. It may not be possible to plan a pelvic pouch procedure in the presence of a desmoid. We know that in some families with FAP, more than one family member may have a desmoid and researchers are now looking for genetic markers to predict who will be affeted and to learn how to prevent it or minimize its effects. However. there is no fixed pattern to how desmoids behave or grow. Different medications are being tried to try and either shrink a patient's desmoid or cause it to stop growing.
Another vital concern was that patients who have had their large intestine removed might ignore the need to check for polyps in the small intestine. A large Scandinavian study found that although 64& of 309 patients had duodenal adenomas, only 0.3% developed a duodenal cancer. The likelihood of developing polyps in the duodenum appears to increase with age, unlike polyps in the large bowel. Some of the questions being discussed include how often one should be examined; what form of medication is effective in avoiding surgery; and which genetic markers can predict who is at higher risk for duodenal polyps or duodenal cancer. Research into finding molecular clues will mean that not everyone with FAP will have to be checked as often or as extensively.
International collaborative group for HNPCC
In the fall of 1993 and 1994, a meeting of doctors and researchers specializing in HNPCC took place. One of the research findings discussed was the association sebaceous (se-BA-shus) gland or other skin tumours and cancer of the large bowel, as well as other internal cancers. The diagnosis is generally made by a dermatologist, or skin specialist, who may then refer the patient for colorectal screening. This rare disease is called Muir-Torre syndrome after two doctors who recognized the inherited nature of the disorder. Each child and brother and sister of an affected person has a 50% risk of developing Muir-Torre syndrome. Once someone is diagnosed with this condition, it is important to find out about other relatives who have had cancer. A genetic counsellor will develop a family tree to ensure that at-risk family members have an opportunity to learn of their risk and to undergo appropriate screening. Recent studies indicate that HNPCC and Muir-Torre syndrome share a common genetic basis.
Pelvic Pouch Support Group
The United Ostomy Association, in association with Mount Sinai Hospital, would like to announce a support group for patients who have undergone pelvic pouch surgery as well as for their families. Both in-patients and patients in the community are welcomed. The goal is to offer both educational and emotional support through a visitor training program; patient literature; and community resources. For further information, please contact the Enterostomal Therapist 416-586-4800 Ext. 5359 or visit www.zanecohencentre.com/ibd/for-patients/ibd-support-network
Look Good...Feel Better Program
The Look Good Feel Better Program is a free service is being offered at six Ontario centres, including Mount Sinai Hospital (see our workshop schedule), for patients with cancer who are coping with changes from the disease and its treatment.Free beauty supplies and wig demonstrations are available from trained professionals. The Hospital provides room space and professional nursing care for each session. A charitable organization, the Canadian Cosmetic, Toiletry and Fragrance Association, supplies all products. Patients treated for cancer at other hospitals are welcome to participate. The goal of the program is to help with the side effects of chemotherapy and radiation by giving patients new skills to use in a practical way.
If you are interested, or know someone who may benefit from the Look Good...Feel Better Program, please call the Mount Sinai Hospital Oncology Nursing Office at: 416-586-4992. A video, "Facing Cancer with Confidence," has been developed for patients who want to see actual cosmetic and fashion suggestions. There is a toll-free number for Canadians: 1-800-387-9954. You may also visit their website at