Hereditary Colorectal Cancer and the Family

Hereditary colorectal cancer syndrome, such as FAP or LS, is actually a family disease. The identification of a family-specific genetic defect can affect the entire family identity. The passing of the diseased gene from one generation to another is a devastating event for most families. This occurrence can drastically change the lives of an individual as well as his/her extended family.

In addition, family dynamics play a major role in how at-risk individuals cope with the threat of an inherited cancer condition. The diagnosis of hereditary colorectal cancer can create a crisis in a family. An individual’s perception of the threat of genetic defect can precipitate denial, anxiety, anger, guilt and profound depression. These reactions may impede successful resolution and adaptation to the genetic disorder.

Psychological Aspects of Genetic Testing

Scientific advances in the past two decades have offered high-risk members of hereditary colorectal cancer families the chance to discover whether they carry a disease-causing genetic mutation well before they develop any symptom. Individuals found to have a cancer-predisposing mutation can reduce their cancer risk by available medical measures including regular surveillance and, in suitable case, preventive surgeries. Despite the potential medical benefits, the availability of genetic testing for cancer susceptibility raises the concerns about the psychological and behavioral impact following disclosure of cancer risk information.

Lessons Learnt from our Previous Studies

With the help of academics from the University of Hong Kong, the Registry had conducted a number of studies over the years to shed light on the psychosocial reaction of our recruits to their hereditary predisposition, factors affecting their decision regarding genetic testing and their adaptation to their genetic testing results.

Published studies to date include:

  1. A report on in-depth semi-structured interviews with four adults diagnosed with hereditary colorectal cancer more than 5 years prior to the interview. This report was supplemented with information gathered from group discussions with 78 syndrome family members during a psychosocial seminar1;
  2. A cross-sectional questionnaire survey on 62 recruits from syndrome families2;
  3. A prospective longitudinal outcome study of 71 individuals undergoing hereditary colorectal cancer genetic testing3.

Influence of Chinese culture

From our qualitative study, we found that Chinese culture has important influence on our recruits’ adjustment to hereditary colorectal cancer.

All along, the Chinese consider cancer as a curse. The inheritance of cancer from one generation to another has been regarded as a family curse. In our qualitative interview with the four syndrome patients, we detected a strong influence of this concept in the initial phase of these individuals’ illness experience. For example, hereditary colorectal cancer was regarded by one recruit as a curse due to improper burial of the ancestors.

However, with time, these recruits were able to dispel such “family curse” and turned the curse into a more welcomed “blessing” with the help of Buddhist philosophical ideas including: accepting and finding meaning in suffering; accepting the unpredictability of life; embracing the virtue of perseverance; being virtuous and helping others; letting go; and growth through pain. Using these philosophical ideas, our recruits were transformed and were able to change their views on life and death toward more positive ways.

Although hereditary colorectal cancer is a family issue, there may be a tendency for our recruits to avoid sharing their emotional turmoil with their family members, not because they think that the other family members are unsupportive, but because they do not want to impose burdens and sufferings on their loved ones. The opportunity to share one’s emotional reactions towards hereditary colorectal cancer genetic screening without having to worry about burdening the other family members is especially important among the Chinese.

Moreover, Chinese culture plays an important role in decisions relating to genetic testing. In our cross-section questionnaire survey, we found that our Chinese recruits were relationally and interdependently orientated in their decisional consideration process; that is, our recruits were concerned about the well-being and reaction of their significant others even more than their own well-being when they decide whether to receive genetic testing or not.

Genetic Testing

In our qualitative interview, our subjects expressed anticipatory anxiety before disclosure of genetic testing results. They also expressed their concern regarding informing relatives about their genetic testing results. It was because they regarded hereditary cancer as a family curse and hence disclosure of this condition equated to bringing bad news to the family members.

In our cross-sectional study, we found that subjects with higher perceived cancer risk tended to emphasize more on the negative consequence of learning their test results. We recommend that psychological counseling would help these individuals to cope with their anticipatory anxiety and the subsequent distress if proven to be mutated gene carriers.

Beside, subjects with higher depression level focused more on the harmful consequence of sharing their test results with relatives. Therefore, psychological services to reduce distress among individuals going through genetic testing might be beneficial. Furthermore, we found that subjects who believed that cancer was due to bad luck or fate (uncontrollable factors) rather than personal factors (such as stress) tended to focus more on the positive aspects of sharing their results with relatives.

In our longitudinal study of psychological outcome of genetic testing recipients up to 12 months after result disclosure, we found that majority (more than 65%) of tested individuals were psychologically resilient; that is, these individuals exhibited little or no depression and anxiety from pre-disclosure baseline up to one year after result disclosure.

More importantly, we found that baseline level of hope was a significant predictor of resilient outcome for both anxiety and depression. This result remained the same after controlling for demographic data, medical information and baseline level of mood status of the study participants.

We believe that high-hope individuals, when confronted with an adverse event such as a family diagnosis of hereditary colorectal cancer, are better able to reprioritize their goals in life, better able to generate alternative ideas about how to achieve their goals and have higher levels of motivation to actualize alternative pathways to their goals.

The good news is that hope-based training is now available to increase an individual’s level of hopefulness. Hope-based training can be incorporated into genetic counseling programmes and such training would be beneficial to the psychological adjustment of hereditary colorectal cancer genetic testing recipients.

Psychosocial Support Programme of the Registry

Based on the findings of our research, the Registry has developed the following psychosocial support initiatives for our recruits:

  1. Psycho-educational Programme for Genetic Testing
    The Registry has developed and published a manual titled “Hope-based Intervention Study, Psycho-Educational Component: a Framework” to facilitate genetic counseling.
    Apart from serving as a document for our psychosocial intervention programme, the manual is also a useful resource to standardize the psycho-educational process of hereditary colorectal cancer genetic testing for quality assurance. Furthermore, the manual can also be used as an educational tool for the training of genetic counselors in Hong Kong.
    Essential components in our programme include:

    1. Pre-testing genetic counseling
    2. Post-testing genetic counseling
    3. Post-disclosure telephone follow-up (1-2 months after result disclosure).
  2. Psychosocial Support Programme
    1. Patient Support Groups – two patient support groups, one for FAP and another for LS, have been established to provide regular education and psychosocial support to individuals with the respective syndromes.
    2. Ad Hoc Peer and Professional Psychological Support – Prior to prophylactic surgery for FAP, the Registry will arrange experience sharing by a fellow FAP individual. For recruits requiring in-hospital treatment, the Registry would arrange hospital visits by volunteering fellow-syndrome patients to provide support. Psychosocial support is also important when recruits face ad hoc life events including pregnancy, death in the family, and new cancer diagnosis in the family. During such situations, the Registry would arrange additional counseling sessions to deal with the medical and social issues involved and to provide psychosocial support when necessary.
    3. The Registry’s newsletter serves as a forum for education of our recruits and the medical profession regarding hereditary colorectal cancer. Recruits also submit articles regularly to be posted on the newsletter to share their experience of living with their condition.
  3. Intervention Based on the Theory of Positive Psychology
    In recent years, the Registry is moving from remedial psychological support towards prophylactic psychological service to improve resilience among the recruits. Our research and service direction are inspired by the cognitive theory of hope proposed by Snyder.

    We believe that increasing hope may increase resilience among our recruits. We have developed a hope-based intervention manual specially designed for syndrome family members. Pilot-testing of this six-session group psychotherapy have been completed with one year follow-up outcome data4. Information gained from this pilot study helps to steer the direction of our psychosocial service.


  1. Yee KWK. The continuation of a family curse? A qualitative study of the illness experience of patients suffering from hereditary colon cancer. Dissertation for the Degree of Master of Social Science. The University of Hong Kong. 2001.
  2. Ho SYM, Ho JWC, Chan CLW et al. Decisional consideration of hereditary colon cancer genetic testing results among Hong Kong Chinese adults. Cancer Epidemiol Biomarkers Prev 2003; 12: 426-432.
  3. Ho SYM, Ho JWC, Bonanno GA et al. Hopefulness predicts resilience after hereditary colorectal cancer genetic testing: a prospective outcome trajectory study. BMC Cancer 2010; 10: 279.
  4. Ho SMY, Ho JWC, Paul BKY, Hui BPH, Wong RSM, Chu ATW. Hope-based intervention for individuals susceptible to colorectal cancer: a pilot study. Fam Cancer 2012; 11(4): 545-51.; doi 10.1007/s10689-012-9545-3.