American-born Canadian novelist Ami McKay has Lynch Syndrome, a genetic mutation in her DNA that predisposes her to developing several types of cancer at a much earlier than average age. Colon is by far the most common cancer that Lynch Syndrome patients are diagnosed with; endometrial is the second most common. The defect is in the MSH2 gene, which normally performs a care-taking role by activating a protein essential to cleaning up cell mutations. Having the MSH2 marker means a person has an 85% chance of developing colon cancer within her lifetime. Nothing can be done to prevent it.

McKay uses her considerable talents as a novelist to tell a compelling story about being part of “Family G”, whose high incidence of cancer made it a subject of great interest to pathologists, proponents of eugenics, cancer researchers, and geneticists for the better part of the last hundred years. McKay comes of a maternal line which is “the longest and most detailed cancer genealogy ever studied in the world,” arguably the family that has contributed the most to “understanding an important genetic disease.” The disease is more common than most people know. The author suggests that as many as one in two hundred people have the genetic defect that causes Lynch Syndrome. (I checked a couple of reputable medical websites and saw different figures cited: 1 in 300 and 1 in 400.) Many don’t know they have the defect, and McKay advocates for genetic testing if there is a family history of early colorectal or endometrial cancer. If you know you’ve got the defect, you can undergo regular cancer screening, increase the possibility of catching the cancer early, and improve your chances of survival.

The events in McKay’s book are, as she says in her introductory note, “laid out in alternating chapters of history, memory and being.” There are chapters that focus on the time before she was born, chapters that tell of her own past, and still other chapters set during the year she was working on the book. The three strands to the narrative are skillfully braided into an effective whole. The sections that concern the author’s family history focus to a significant extent on her female forebears: her great-great aunt Pauline (who first brought the family’s history of cancer to medical attention), her great-grandmother, grandmother, and beloved mother.

In these chapters, McKay also discusses the important researchers who studied the family over the years. In the second decade of the twentieth century, Aldred Warthin, a University of Michigan pathologist and eugenics advocate, was Pauline’s first medical contact. Over several years, he acquired tissue and tumour samples from her family (“Family G”), as well as a genealogical chart prepared by Pauline herself, which marked her relatives’ deaths from cancer. Warthin advised Pauline against marriage and children. He believed that it was her duty to America to ensure her inferior stock was discontinued. (McKay considers the ways in which the American eugenics movement came to influence Hitler.) The medical community was not receptive to Warthin’s ideas about cancer as an inherited disease. Later, beginning in the 1960s, Henry Lynch, an oncologist at Creighton University, was to have more success. After collecting considerable data, Lynch contacted researcher Bert Vogelstein at Johns Hopkins, whose team came up with the genetic test that identified the defective gene.

Complementing McKay’s historical consideration of Family G’s contribution to the understanding that cancer could be inherited are sections that highlight McKay’s personal history, as well as chapters focusing on the year in which she wrote her book, when her eldest son was deciding if he should undergo genetic testing. The burden that Lynch Syndrome imposes on patients comes across loud and clear. McKay has had to confront a multitude of medical decisions. Should she have a hysterectomy, given that so many women in her family were struck with aggressive endometrial cancer? Since an endoscope could miss cancer hiding in her unfortunately tortuous colon, should she undergo surgery to remove that final section of her intestine? These questions and others generate tension in McKay’s telling, supplying it with real narrative drive.

I found McKay’s focused memoir an affecting, informative, and well written book. The members of her family, past and present, come alive on the page, and her love for and gratitude to her mother are particularly movingly communicated. The author includes many family photographs, which help to make her relatives even more real to the reader. I only wish a genealogical table had been provided. McKay is judicious in her presentation of medical information for the lay reader. Some may not like the shifting tripartite structure of the book, the regular moving backwards and forwards in time, but I thought it a clever and effective way overall to communicate information, reminding the reader that the past is always with us. ( )

4-1/2 stars

This is a wonderful book, an excellent combination of personal biography, family biography & history, medical science history, with some general history and current events included. It contains some basic information about the ramifications of having inherited Lynch Syndrome. It’s a lovely family/families story and coming of age story. I love how the narrative goes back and forth in time, following various people and events. The account is easy to follow because each mini-section has its year included in the title. I recommend it to all readers interested in any of the above types of books. I was extremely interested in this book because I do have Lynch Syndrome. I particularly recommend it to others with Lynch Syndrome or those having any genetic mutation that makes them prone to develop cancers, or perhaps other ailments as well.

This is not a depressing book. At times it is sad but despite the difficult subject matter it is life affirming and fascinating in every way, at least it was to me.

I have great admiration for the author and particularly for some of her ancestors. Her family members greatly contributed to the discoveries made about genetic reasons for some cancers in some families. I’m in awe and jealous that family members knew Dr. Lynch and important researchers.

I hadn’t known the relationship between the eugenics movement in the United States and conditions such as this, though I did know about its ties with Nazis in Germany. I could have actually done without mentions of the current U.S. President and some other celebrity figures and current events, though I do understand why they were included, especially the 9/11 terrorism acts.

This was a holiday gift from a good friend who knew how much I wanted to read it. It’s a Canadian book and there is no United States edition. I requested it but my library couldn’t order it for that reason. They have to order from certain vendors. It can be purchased on Amazon or from Canadian bookstores, and perhaps also from bookstores in other countries as a special order. I’m grateful that I got the chance to read it not too, too long after it was published.

I haven’t seen another book like it and I highly recommend it particularly for those with Lynch and those who know anyone from a “cancer family” also.

Most with Lynch Syndrome gene mutations (and other gene mutations that also increase risk for cancer and other diseases) do not know that they are affected. Lynch Syndrome is not exceedingly rare. I’ve heard the stats 1 in 300 and 1 in 279 probably have one of the 5 known gene mutations mean Lynch Syndrome. If you’ve had 3 biological relatives who’ve be diagnosed with cancer, particularly before age 50, and particularly with the most common “Lynch cancers” of colon, rectal, uterine, ovarian, stomach, small intestine, bile duct, pancreas, kidney, and also maybe breast, skin, brain, but the mutations can lead to all forms of cancer, then I’d suggest getting the simple test. Those who have it can be proactive and get screenings and prophylactic treatments to avoid it or catch it early.

No need for others to read the text in spoiler tags. Tons of repetition and few lucid or logical sentences, in a hurry to get something down while it is still 2019: Some personal jumbled musings not really part of the review – I’ll try to come back someday to edit and perhaps to also write a more worthy review:



I might come back and clean up and organize these notes. I might at least get rid of the repetition and try to form some coherent sentences. I finished the book on 2019/12/31 and wanted some review posted while it was still 2019.

Everyone on my mother’s mother’s mother’s side of the family has died of cancer. Even before I knew what Lynch was, it was obvious there was something hereditary going on. Before I reached my teens I expected to get cancer when young and expected to die from cancer. Never did I expect to reach my current age still cancer free, a previvor. Of the relatives I know about on that one fourth of my family, I’ve outlived all the women and all but two of the men (dead at 83 and 72, both diagnosed in their late 60s) by more than a decade and oftentimes by half a lifetime. I would have gotten tested had there been a test when I was twelve, and definitely at the “permitted” age of 18. I’d thought I was tested early on but I guess not. The author was tested four and a half years before I was. When I was tested they could test for only three of the now five known mutations, and the genetic counselors couldn’t tell me exactly what my mutation meant. My gastroenterologist at the time told me it didn’t matter the test results; she knew I would get colon cancer. She just couldn’t tell me when. I had figured the same. I have a different mutation than the author does. Different mutations are associated with different risks regarding types of cancer and ages at diagnosis, to some extent.

By the time I got tested I was the only survivor I knew of from that family line so I was the only person tested. I know that my mother, my grandmother, my and my great-grandmother had it, also my mother’s brother, and all (or maybe all but one) of her uncles. It’s supposed to be a 50/50 chance to pass it on parent to child (assuming only one parent has it and not both; that’s another story) but in my family it seems to be 100%. I have to only guess that my ancestors had the same mutation I do. There is no way to know for sure.

I’d love a full battery of tests and some genuine genetic counseling, but it wouldn’t really change anything except to satisfy my curiosity. I wish I could see a Lynch specialist and not have to keep educating doctors or having them having to educate themselves in only a basic way when they’re dealing with me. I have not been able to get all the recommended screenings, though I certainly get more than most people do. It took three decades of every doctor trying to convince me (I’d had a really, really bad experience with surgery at age 13 and had avoided all surgery after that) before I finally submitted to a hysterectomy. I was lucky I got that done not too late. Extremely lucky given my family history!

I knew that this book would be a tough read for me. Except for online people, and I don’t really know any, but just read posts, I don’t know anyone else with Lynch Syndrome. I was so eager to read this book. I’d love to chat with the author. Our experiences are so different though, except that we’re both thankfully still cancer free. I’m 15 years her senior so my situation seems amazing to me. The book did not depress me or scare me in the ways I most feared. I simply enjoyed the story. What was hard for me is that unlike the author I do not have many relatives and very few family stories. I couldn’t write a book like this. I’d have to rely on records and not on other people.

As I was reading I found and pulled out my genetic test results. They tested for only 3 mutations MLH1, MSH2 (the author’s), and MSH6 the only one I am tested positive for, but now they know of others too: EPCAM and PMS2. I got myself tested on April 11, 2006 and the report came back on June 20, 2006. I’ve never seen a Lynch specialist. I’ve known since my mother died when I was 11 though, already knowing about previous cancer deaths, that I was likely to die young from cancer, even before I knew anything specific about genetic mutations or knew of Lynch Syndrome or knew about genetic testing. I thought I’d done the genetic testing much earlier, partly because other Lynch people seem to have been tested for more variants and because it seems like much longer ago, but that’s because I’d already assumed I had the “cancer gene” that had decimated one quarter of my family. I’d love to be able to get the full battery of tests and would love to go to Dana Farber’s Lynch Center or another major cancer center, or to at least see a doctor who has extensive knowledge about Lynch rather than be the one who has to education my doctors.

Lynch Syndrome isn’t incredibly rare. I’ve heard stats of 1 in 279 and of 1 in 300. Anyone who’s had a few relatives die before age 50 of cancer, particularly one of the “Lynch cancers” should be tested. If positive insurances will pay for possibly lifesaving screenings, much more than they approve for the average person.

I feel sad because I could never have written a family memoir like this. My mother died when I was 11. The only other relatives from that one fourth said left by the time I was born were my mother’s brother (never had a good relationship with him) and some cousins of my mother’s generation and young from Wales, England, Israel. I met one a few times and a few from Wales when I was 10 or 11 but never knew anyone other than my mother and uncle. My mother told a few family stories and my father could give a bit of information after my mother died, but I really know so little. I have very few “family stories” and virtually none from my maternal grandmother’s (and great grandmother’s) side of the family.

I’m happy to lend this book to any local person who would like to read this book. If the library (SFPL – San Francisco Public Library) will make it available for circulation (vs. what they usually do which is putting it in their library sale or making it for library use only) I plan to eventually donate the book to them. ( )