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The French Ad-Hoc Committee on Hereditary Non-polyposis Colon Cancer (HNPCC) management meeting on behalf of the French Health Minister has recently released its statement.1 The report on prophylactic colorectal resections for HNPCC related adenocarcinomas (Gut 2003;52:1752–5) is in contrast with ours and we would like to discuss this point.
Use of decision analysis models is a smart approach in dealing with such complex situations. However, life expectancy related to the occurrence of metachronous colorectal carcinoma should be balanced against the negative impact on quality of life in the case of prophylactic extensive colorectal resections. Thus quality adjusted life expectancy, integrating the individual patient’s choice,2 might be a more accurate approach. Comprehensive, fair, and loyal information of what the patient can hope for is mandatory to fulfil the requirements of patient autonomy in such a shared decision. From the data reported by de Vos tot Nederveen Cappel et al (Gut 2003;52:1752–5) as well as from other data not mentioned in their paper, we derived somewhat different, if not totally opposite, conclusions. Five year survival rates for colorectal cancer considered in their model seem at the least optimistic. Five year survival rates reported for Dukes’ B and C colorectal cancers in HNPCC patients by Bertario and colleagues3 were 70% and 41%, respectively. The overall five year survival rate of patients with colorectal cancer in HNPCC is approximately 55%. Multidimensional analyses has not shown HNPCC to be an independent parameter when comparing five year survival rates of HNPCC with sporadic colorectal cancer.3–5
Although these data strongly demonstrate a need for surveillance in HNPCC patients, they underscore the fact that if the decision for an extended prophylactic resection is made before the exact pathological staging of the tumour is known, 45% of patients will sustain a substantial decrease in quality of life with no counterpart in quantity (that is, life expectancy). de Vos tot Nederveen Cappel et al (Gut 2003;52:1752–5) calculated life expectancy for a hypothetical 27 year old patient with colorectal cancer whereas in our experience only 6% of MMR gene carriers belong to that very early onset group. The median age of patients with colorectal cancer under surveillance programmes for HNPCC is 44 years and the computed mean estimation of increased life expectancy after extended resection for a 47 year old affected person is only one year. Different indications should be made in men and women because of their significantly different relative risks for metachronous cancer as well as for the competing risk of endometrial cancer (unless there is also a “recommendation” for “incidental” prophylactic hysterectomy). Last, but not least, the negative impact on life expectancy related to other tumours from the spectrum as well as to the prophylactic resections themselves are not taken into consideration. For young patients between the ages of 27 and 47 years with colorectal cancer, the choice between prophylactic surgery or segmental colectomy is a complex decision. One should ask honestly if these same patients who on one hand have already to face the anxiety generating information that they have cancer are also ready or capable of making any reasonable decisions about a 2–3 year increase in life expectancy versus a potential decrease in their quality of life. Let us assume that the first expectation for these patients is to be alive with no recurrent disease 5–10 years later. An increased life expectancy is a somewhat theoretical conception which entails additional years at the end of one’s life while the negative impact on quality of life of extended operations will start from the first postoperative day.
The patient’s individual choice is pivotal in decisions for prophylactic extended resections and fully unbiased information may be more valuable than any doctor’s “recommendation”. The results of the study of de Vos tot Nederveen Cappel et al (Gut 2003;52:1752–5) should therefore be part of the information offered to patients. For these reasons, the conclusions of the French Ad-Hoc Committee are that not only are routine extended prophylactic resections not recommended but, on the contrary, given the efficacy of screening programmes, extended surgery is also not indicated. Controversial conclusions derived from the same scientific “evidence” in different cultural background have already been reported.6
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