Dr. Warthin, a pathologist at the University of Michigan, had a conversation with his seamstress who told him she feared she would die of cancer because many family members over several generations had died of uterine or “abdominal” cancer at young ages.

Dr. Warthin published a paper recording his seamstress’ family history of uterine and “abdominal” cancers. He named her family, Family G. He concluded that there could be, at least in her family’s instance, a familial predisposition to cancer.

Dr. Henry Lynch reported several other family histories in detail with clusters of cancer. Having been familiar with Dr. Warthin’s Family G reports, he arranged a family G reunion to learn more about this family. He conducted a medical genetic investigation of the family. He used the term “Cancer Family Syndrome” to explain these families' cancer histories.

Dr. Lynch first used the term “hereditary non-polyposis colorectal cancer syndrome” (HNPCC) because there were other polyposis colorectal cancer syndromes which resulted in hundreds of polyps and the families he was studying didn’t have many polyps. Ultimately, it became known as Lynch Syndrome because of Dr. Lynch’s contributions.

The specific gene mutations were discovered and during this time, in a period of just 16 months, Lynch Syndrome was firmly put on the scientific map.

After 127 years, Lynch Syndrome is still not very well known in the general public and in the medical community. Approximately 90-95% of Lynch Syndrome carriers have NOT been identified!