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Protecting Families - Saving Lives
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Creighton University- Hereditary Cancer Center
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However, many of our families are still being wiped out and individuals are dying as a result of delayed diagnoses.  Today, it is projected over 600,000 individuals have the defective gene, however ess than five percent of them have been diagnosed.  This is believed to be due to many factors:

  • Many American medical schools did not teach medical students about Lynch syndrome until well after 1985.  It was documented in journals and studies, but the information did not get to the physicians.  It is highly likely that most physicians that completed medical school before 1995-2006 know little  about Lynch syndrome.
  • Many of today's doctors are imported from other countries where they attended foreign medical schools that didn't include Lynch syndrome within its curriculum.
  • Very few physicians are taking family histories and even when they do, the family history is not documented in a detailed manner within the patient's file so other referred physicians are not aware of it.  This subsequently eliminates checks and balance quality assurance.  The reasons for not following this very basic standard of care are many, including time, lack of payment from insurance companies, fear of future litigation, etc.
  • Many physicians only have fifteen minutes to consult with a patient and the taking and documentation of a good family history consumes almost all that time.  There is a shortage of GPs in today's medical community and only half as many physicians are becoming GPs today as they were ten years ago. To further complicate matters, physicians used to work sixty hours a week and in the past several years have reduced their work schedules.  As a result, an equivalent of 36,000 physicians have been eliminated from the market, increasing the need for general practitioners, dramatically.
  • Many records are now electronically generated and even software purchased several years ago is already antiquated as it does not facilitate a  function for taking family histories.
  • Insurance companies don't compensate physicians for the time required in thoroughly taking a family history.
  • Patients don't know their family history to give their doctors.
  • Few physicians have the tools or the knowledge of how to access of specific genetic testing or how to choose the "right test" for the right patient.  Many don't know how to treat an individual who is at high risk for hereditary cancers.
  • A failure to diagnose Lynch syndrome may be the result of "availability heuristic" situations in which physicians only identify with that which they have actually had some sort of experience and without that experience other ailments and syndromes are not considered for diagnosis.
  • There is often dismissal of symptoms of colon and other "below the belt cancers" in individuals of a younger than usual age (under forty) due to lack of information about Lynch syndrome and the false belief colon cancer is a "old person's" cancer.
  • Many physicians don't recognize early endometrial and ovarian cancers as possible hereditary cancers.
  • Many physicians don't realize there are cancers like Lynch syndrome which metastasize in 1-3 years, mistakenly thinking ALL cancers take over five years to develop.
  • Some physicians experience denial and projection of one's own feelings of fear of cancer such as telling a patient, "Do you really want to know if you are going to get cancer?"  "Do you really want to know if you may die?"
  • Patients often experience fear and subsequent denial of risk, choosing not to inform the physician of the family history or declining genetic testing.

 



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