In Hong Kong, colorectal cancer (CRC) is an increasing healthcare burden.
According to the latest statistics, CRC is the second commonest cancer and the second cancer killer with 3,706 new cases and 1,614 death cases in 20051. As shown in the following chart (adopted from the Hong Kong Cancer Registry of the Hospital Authority), there has been a progressive increase in the rate of CRC in the past decades. It has been predicted that CRC will surpass lung cancer as the commonest cancer in Hong Kong within ten years.
Please refer to the latest information in the annual report for 2007.
HKHGCR_Annual_Report_2007.pdf - 392K
Comparing two time periods of 1986-1995 vs. 1996-2005, the main increase in colorectal cancer incidence can be attributable to classical, late-onset cancer (age above 50 years old) for which environmental factors have been thought to be the main cause. However, Hong Kong has a much higher incidence of colorectal cancer in the young age group (under 40 years old) than other countries.
According to international literature, it is estimated that about 5-10% of these patients are predisposed to colorectal cancer due to defects in their genes. The two main types of hereditary colorectal cancers (HCRC) are Familial Adenomatous Polyposis (FAP) and Hereditary Non-Polyposis Colorectal Cancer (HNPCC) syndromes. These are caused by germline mutation of the Adenomatous Polyposis Coli (APC) and Mismatch Repair (MMR) genes, respectively. Members of these families will have 50% chance of inheriting the disease gene and predispose to colorectal cancer and cancers in other sites such as brain, stomach, duodenum, thyroid, female organs and the urinary tract. Moreover, they tend to develop these cancers early in their life. This is reflected in our local data which shows that many of our young colorectal cancer patients are suffering from one of these HCRC syndromes. The psychological and economic burdens on these families are profound.
For these high-risk individuals, pre-symptomatic detection and treatment of precancerous adenomas or early cancers by regular surveillance is the most effective way to prevent colorectal cancer and its associated morbidity and mortality. Recent advances in molecular technology have allowed detection of abnormal genes causing these syndromes. Genetic diagnosis and predictive genetic testing make it possible to distinguish accurately the disease-gene carriers from those who have not inherited the defective gene within affected families, thus allowing an accurate risk assessment of all the at-risk family members. Those not harbouring the disease gene will be relieved from the psychological burden as well as the chore of continuous surveillance. Resources can then be concentrated on counselling and vigilant surveillance of those carrying the defective gene to prevent cancer development.
Apart from medical management of HCRC families, the psychosocial implication of a hereditary cancer condition on affected families cannot be overlooked. Our previous study has shown that Chinese are relational orientated in their decisional consideration regarding HCRC genetic testing. In other words, our recruited members regarded the well-being of their significant others to be more important that their own well-being in their decision-making process regarding genetic testing. Besides, individuals with higher perceived cancer risk regarded learning their genetic testing results as more harmful than those with lower perceived risk. These findings have helped us to fine-tune our counselling strategy and to devise psychosocial support programme for our recruited family members.
Management of these HCRC families requires a multidisciplinary approach and is best organised by a dedicated registry. Since its establishment in 1995, the Hereditary Gastrointestinal Cancer Registry has developed a comprehensive service for these HCRC families in Hong Kong.
Two Main Types of Hereditary Colon Cancer
The two main types of hereditary colorectal cancers are Familial Adenomatous Polyposis (FAP) and Hereditary Non-Polyposis Colorectal Cancer (HNPCC) syndromes. They are caused by germline mutation of the Adenomatous Polyposis Coli (APC) and Mismatch Repair (MMR) genes respectively. Members of these families have 50% chance of inheriting the diseased gene and will be predisposed to colorectal cancer and other cancers from organs such as brain, stomach, duodenum, gynaecological organs and urinary tract. Moreover, they tend to develop these cancers earlier in their life. This fact is reflected in our local data, which shows that many of our young colorectal cancer patients are suffering from one of these hereditary colorectal cancer syndromes
(note 5-6). The psychological and economic burdens on these families are profound.
For these high-risk individuals, pre-symptomatic detection and treatment of precancerous adenomas or early cancers by screening is the most effective way to prevent colorectal cancer and its associated morbidity and mortality
(notes 7-11). Recent advances in molecular technology have allowed detection of these abnormal genes that caused the two syndromes
(notes 12-13). Moreover, our recent findings of two commonly occurring founder mutations in Southern Chinese have facilitated our genetic diagnosis
(notes 14-15). Genetic diagnosis and screening make it possible to distinguish accurately the disease-gene carriers from those who have not inherited the defective gene within affected families, thus allowing an accurate risk assessment of all the at-risk family members. The non-disease-gene carriers will be relieved from the psychological burden as well as the chore of continuous screening. Resources can then be concentrated on counselling and vigilant surveillance of those carrying the defective gene to prevent cancer development.
Management of these hereditary colorectal cancer families requires a multidisciplinary approach and is best organised by a dedicated registry. Since its establishment in 1995, the Hereditary Gastrointestinal Cancer Registry has developed a unique service for these hereditary colorectal cancer families in Hong Kong.
Clinical & Administrative Team
This team is responsible for risk assessment, arrangement and performance of clinical screening/surveillance, advice on and arrangement of clinical management whenever necessary and the daily administrative work of the Registry. This team consists of Dr. Judy Ho (a colorectal surgeon working at the Department of Surgery, Queen Mary Hospital)
Email Dr Ho at
judyho@hkucc.hku.hk
Ms. Emily Chan
Ms. Chan is our Registry Coordinator. She plays the important role of organising the daily activities of the Registry and provides education and counselling service to recruited families. Contact her at
mschan1@hkucc.hku.hk or by telephone on 2855 4911.
Miss Fanny Chung is our clerical assistant. Besides, our coordinator also plays an important role of providing support to recruited families.
Professor K.M. Chu is our liaison upper gastrointestinal surgeon working at the Department of Surgery, The University of Hong Kong. He and his team are responsible for upper gastrointestinal surveillance activities for our syndrome families.
There are also liaison members of surgeons and oncologists from both the public and private sectors. They are responsible for patient referrals and management of families in their respective hospitals/clinics when required.
Laboratory Team
To provide molecular genetic analysis for recruited families, the Registry is collaborating with the laboratory of Dr. Edmond Ma at the Hong Kong Sanatorium & Hospital as well as the laboratory of Dr. Faye Eggerding in the United States to facilitate tumour molecular analysis as well as mutation detection for FAP, HNPCC and other polyposis syndrome. These laboratories and our in-house laboratory technician work closely with the clinical team to ensure optimal and timely molecular analysis for our existing and newly recruited families.
There are also liaison pathologists from various public and private hospitals to assist the Registry in the tracing of tumour tissue for molecular genetic analysis.
On the research side, collaborations have been established with Professor Pak Sham of HKU, Professor KK Cheng of the University of Birmingham, Professor Ian Tomlinson of the Cancer Research UK and Professor Richard Houlston of the Cancer Research UK for molecular genetic research on colorectal cancer. There are also clinical collaborators in the Departments of Surgery and Clinical Oncology from various Hospital Authority hospitals participating in our molecular genetic research.
Psychosocial Team
This team is responsible for genetic counselling and psychosocial support of recruited families. The team consists of Dr. Judy Ho (clinician) and Miss Annie Chu, our full-time clinical psychologist. The team is grateful to have Dr. Samuel Ho from the Department of Psychology, The University of Hong Kong to advise us on psychosocial research and service planning.
Liaison members from The University of Hong Kong include Professor Cecilia Chan from the Centre on Behavioural Health, Dr. WY Lee from the Family Institute, Dr. Antoinette Lee from the Department of Psychiatry and Dr. Daniel Fong from the Department of Nursing Studies. We are also working closely with social workers and clinical psychologists from Cancer Centres of various Hospital Authority hospitals.