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A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery
Weaving his own moving family story with a sweeping history of cancer research, Lawrence Ingrassia delivers an intimate, gripping tale that sits at the intersection of memoir and medical thriller
Ingrassia lost his mother, two sisters, brother, and nephew to cancer—different cancers developing at different points throughout their lives. And while highly unusual, his family is not the only one to wonder whether their heartbreak is the result of unbelievable bad luck, or if there might be another explanation.
Through meticulous research and riveting storytelling, Ingrassia takes us from the 1960s—when Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr. first met, not yet knowing that they would help make a groundbreaking discovery that would affect cancer patients for decades to come—to present day, as Ingrassia and countless others continue to unpack and build upon Li and Fraumeni’s initial discoveries, and to understand what this means for their families.
In the face of seemingly unbearable loss, Ingrassia holds onto hope. He urges us to “fight like Charlie,” his nephew who battled cancer his entire life starting with a rare tumor in his cheek at the age of two—and to look toward the future, as gene sequencing, screening protocols, CRISPR gene editing, and other developing technologies may continue to extend lifespans and perhaps, one day, even offer cures.
Ingrassia lost his mother, two sisters, brother, and nephew to cancer—different cancers developing at different points throughout their lives. And while highly unusual, his family is not the only one to wonder whether their heartbreak is the result of unbelievable bad luck, or if there might be another explanation.
Through meticulous research and riveting storytelling, Ingrassia takes us from the 1960s—when Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr. first met, not yet knowing that they would help make a groundbreaking discovery that would affect cancer patients for decades to come—to present day, as Ingrassia and countless others continue to unpack and build upon Li and Fraumeni’s initial discoveries, and to understand what this means for their families.
In the face of seemingly unbearable loss, Ingrassia holds onto hope. He urges us to “fight like Charlie,” his nephew who battled cancer his entire life starting with a rare tumor in his cheek at the age of two—and to look toward the future, as gene sequencing, screening protocols, CRISPR gene editing, and other developing technologies may continue to extend lifespans and perhaps, one day, even offer cures.
320 pages, Hardcover
First published May 14, 2024
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June 4, 2024
4.5 stars
Cancer is a disease in which some of the body’s cells grow uncontrollably and spread to other parts of the anatomy. Cancer often manifests as tumors, and the earliest mention of breast tumors occurred over 5,000 years ago, in papyrus documents from ancient Egypt. The illness was named by the ancient Greek physician Hippocrates in 370 BCE, who called the lumps karkinomas (carcinomas).
Brain Tumor.
Over the years, cancer has been attributed to a variety of factors, including viruses, environmental carcinogens, chemicals, smoking, sunlight, diet, and more.
Heredity was also suggested as a causative factor, but most medical researchers dismissed the idea until Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr. demonstrated that some families have an unusually high incidence of cancer, and that a propensity for the disease is inherited.
Dr. Frederick Pei Li (left) and Dr. Joseph Fraumeni Jr..
The author, award-winning journalist Lawrence Ingrassia, comes from a cancer-prone family.
Author Lawrence Ingrassia.
Ingrassia lost his mother Regina to breast cancer when she was 42; his sister Angela to abdominal cancer at age 24; and his sister Gina to lung cancer at age 32. Ingrassia's nephew Charlie, who got his first cancer at age two and later had a cancerous leg amputated, died at age 39; and Ingrassia's brother - Pulitzer-Prize winning reporter Paul Ingrassia (Charlie's father) - developed several different cancers and died at age 69.
Regina and Angelo Ingrassia with (left to right) Gina, Lawrence, Angela, and Paul.
Regina Ingrassia with Paul and Lawrence.
Pulitzer-Prize winning reporter Paul Ingrassia.
Lawrence's father Angelo worked as a research scientist, and - for a long time - the family thought their cancers might be related to chemicals Angelo brought home on his clothes. Later, the Ingrassias learned their family carried a faulty gene.
Heredity wasn't on the radar as a factor in cancer until Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr. began working together at the National Cancer Institute in Maryland.
In 1966, the two researchers came across the unusual case of Ned and Darrel Kilius. At age 23, Ned was diagnosed with leukemia and soon afterward his ten-month-old son Darrel developed a soft-tissue tumor called a rhabdomyosarcoma on his arm. When Li and Fraumeni looked into the Kilius family tree (with the help of Ned's mother Irma), they discovered the clan was unusually susceptible to malignancies.
A rhabdomyosarcoma (soft tissue tumor) can start as a small bump
The scientists learned that Ned's uncle Charles and cousin Joyce died of lung cancer, and even more significantly, Charles' baby grandson Michael had had a soft tissue rhabdomyosarcoma in his shoulder. Ingrassia writes, "Li and Fraumeni were astonished: Not only did there seem to be a lot of cancers in the [Kilius] family, but two second cousins had been diagnosed as babies with the same rare soft-tissue cancer. That was virtually unheard of.....There are only five cases of rhabdomyosarcoma reported annually for every one million children in the United States."
To make a long story short, Ned Killius died at age 24, and Li and Fraumeni continued to collect information and medical records for the Kilius clan. The numerous malignancies in the family convinced the scientists their cancers were hereditary.
Ned Kilius died at age 24
Li and Fraumeni also located other cancer-ridden families, and expanded their studies to include them. As a result, the researchers became even more convinced of a genetic factor in certain groups. Li and Fraumeni published scientific papers in 1969 and 1975, and presented their research at genetics conferences, but were met with skepticism from most cancer researchers. Nevertheless, a few additional scientists jumped onto the 'hereditary factor' bandwagon, and more and more evidence accumulated.
Finally, in 1982, "English cancer researchers who also were studying families with high levels of cancer published a paper that credited Li and Fraumeni for their groundbreaking work by naming the suspected syndrome after them for the first time. The article they wrote for the 'Journal of Medical Genetics' was titled 'Two Families with the Li-Fraumeni Cancer Family Syndrome'."
Once heredity was identified as a factor in some cancers, genetics researchers were hot on the trail of the gene that caused the ilnesses. Two scientists - Arnold Levine in America and David Lane in England - eventually zeroed in on the same gene, TP53 (called p53).
Scientist Arnold Levine
Scientist David Lane
The p53 cancer gene
Researchers learned that p53 was not an oncogene (a gene that causes cancer) but rather an anti-oncogene (a gene that suppresses cancer). "Rather than causing cancer, p53's normal function was both to prevent cells from becoming malignant and even to kill cancerous cells.....The mutation in p53 somehow turned off the gene's cancer-fighting powers, thus increasing the likelihood of tumors developing."
This ground-breaking discovery led to the search for cancer treatments and medicines, and raised the specter of testing individuals in Li-Fraumeni families for the defective p53 gene. Affected individuals generally pass the 'bad gene' to half their offspring, and some people want to know if they have it, while others don't. The problem is, since there's currently no 'cure' for the p53 gene, how does it help to know you have it? And should you have children if you know you're a carrier? Ingrassia addresses these issues generally, and as they relate to his own extended family.
Ingrassia also mentions another inherited cancer gene, called BRCA, which is linked to breast cancer. Women who carry the BRCA gene are at high risk for breast tumors, and for these females, knowing they have the gene may be beneficial.
The BRCA breast cancer gene
Ingrassia doesn't mention this in the book, but actress Angelina Jolie underwent a double mastectomy when she learned she has the BRCA1 gene. She's said her chances of developing breast cancer have now dropped from 87% to under 5%.
Actress Angelina Jolie had a double mastectomy to avoid contracting breast cancer
To summarize, in this very readable book Ingrassia writes a good bit about Li-Fraumeni families; the search for ways to prevent, treat, and cure cancer; start ups and Big Pharma; and more. The author also includes numerous anecdotes about the backgrounds and personal lives of the people involved - patients and scientists alike - so we get to know and care about them.
Ingrassia's family - and their battles with cancer - inspired the author to write this book, and their tales are liberally interspersed throughout the narrative. These stories are inspirational, moving, and heartbreaking. The Ingrassia family embraces the phrase "Fight Like Charlie", for Charlie Ingrassia, who began his battle with cancer when he was two-years-old, fought one malignancy after another all his life, and sadly succumbed at age thirty-nine.
Charlie Ingrassia
This is an important book for many reasons, one of them being that some physicians still aren't familiar with Li-Fraumeni Syndrome. This can be remedied, in part, by gatherings like Li-Fraumeni Syndrome Awareness Day.
Li-Fraumeni Syndrome Awareness Day
We have reason to be optimistic, because researchers and doctors have made great strides in combatting cancer, and the hard work continues every day.
Thanks to Netgalley, Lawrence Ingrassia, and Henry Holt & Company for a copy of the book.
You can follow my reviews at http://reviewsbybarbsaffer.blogspot.com
June 8, 2024
Cancer is a horrible disease. It stole my husband and more than one friend. I battled it too, not long ago. I won. Many, like my husband, don't, and it's not because they didn't fight hard enough.
This book is a labor of love. Meticulously researched, detailed, poignant, A Fatal Inheritance takes us through six plus decades of dedication and sorrow cumulating in the discovery of Li-Fraumeni syndrome, an inherited mutation on the p53 tumor-suppressor gene.
Even knowing the mutation was on p53, figuring out where was daunting and tedious. One researcher likened it to trying to find one house in the state of Texas without an address.
A person with the mutation has a 50/50 chance of passing it on to their child, and having Li-Frameni is essentially a death sentence. The majority of carriers die young. Malignancies often begin in childhood, and suffering is guaranteed.
The author is the only one of four siblings who didn't inherit the gene mutation from his mother's side of the family. His mom died of breast cancer when he was a teenager. One of his sisters died at age 24 from abdominal cancer; the other died in her early-30s from lung cancer (she wasn't a smoker). Ingrassia's older brother also died of lung cancer in his 60s, and cancer took his nephew, Charlie, just before his 40th birthday.
Charlie had already fought cancer twice (once as a baby, once in his 20s). The third time, doctors found a large tumor in his hip and had to amputate his hip and leg to remove it. Even then Charlie, an avid cyclist, didn't give up. He was optimistic and had a true zest for life.
But cancer doesn't care. It doesn't discriminate. It shows no mercy. A few months later, Charlie developed multiple malignancies in his lungs and died at age 39.
While most of the book focuses on the scientists and doctors who worked tirelessly behind the scenes to find p53, Ingrassia introduces us to several families with Li-Frameni. My god, the tragedies just piled up: babies, children, young adults, parents and kids dying within months of each other. Brutal and so damn sad.
Thankfully, Li-Fraumeni is rare. Despite the discovery of p53 and other cancer genes, such as BRCA 1 and 2, the majority of mutations are somatic, not hereditary.
While we've made strides in treating cancer, it's not enough. Approximately 10 MILLION people die from this ugly disease each year worldwide. It's an epidemic, and the best treatment we have is prevention.
A mammogram saved my life. Others aren't so lucky.
This book is a labor of love. Meticulously researched, detailed, poignant, A Fatal Inheritance takes us through six plus decades of dedication and sorrow cumulating in the discovery of Li-Fraumeni syndrome, an inherited mutation on the p53 tumor-suppressor gene.
Even knowing the mutation was on p53, figuring out where was daunting and tedious. One researcher likened it to trying to find one house in the state of Texas without an address.
A person with the mutation has a 50/50 chance of passing it on to their child, and having Li-Frameni is essentially a death sentence. The majority of carriers die young. Malignancies often begin in childhood, and suffering is guaranteed.
The author is the only one of four siblings who didn't inherit the gene mutation from his mother's side of the family. His mom died of breast cancer when he was a teenager. One of his sisters died at age 24 from abdominal cancer; the other died in her early-30s from lung cancer (she wasn't a smoker). Ingrassia's older brother also died of lung cancer in his 60s, and cancer took his nephew, Charlie, just before his 40th birthday.
Charlie had already fought cancer twice (once as a baby, once in his 20s). The third time, doctors found a large tumor in his hip and had to amputate his hip and leg to remove it. Even then Charlie, an avid cyclist, didn't give up. He was optimistic and had a true zest for life.
But cancer doesn't care. It doesn't discriminate. It shows no mercy. A few months later, Charlie developed multiple malignancies in his lungs and died at age 39.
While most of the book focuses on the scientists and doctors who worked tirelessly behind the scenes to find p53, Ingrassia introduces us to several families with Li-Frameni. My god, the tragedies just piled up: babies, children, young adults, parents and kids dying within months of each other. Brutal and so damn sad.
Thankfully, Li-Fraumeni is rare. Despite the discovery of p53 and other cancer genes, such as BRCA 1 and 2, the majority of mutations are somatic, not hereditary.
While we've made strides in treating cancer, it's not enough. Approximately 10 MILLION people die from this ugly disease each year worldwide. It's an epidemic, and the best treatment we have is prevention.
A mammogram saved my life. Others aren't so lucky.
May 7, 2024
In 1968, at the age of 42, Ingrassia's mother died of cancer—a tragic event for any family, but unusual mostly for her young age. Cancer is common enough that all of us will be touched by it in some way or another—oneself, a loved one, etc.—and treatment options had (still have) a long way to go. But then Ingrassia's youngest sister was diagnosed with cancer and died at 24, and his other sister was diagnosed with cancer and died at 32, and his nephew got cancer when he was just 2. It didn't end there. In the United States, writes Ingrassia, life expectancy is nearly eighty years. In my family, not including me, the average life span was forty-five (loc. 3997*). The odds were staggering, but at the time doctors shrugged it off as terrible luck.
But the brilliance of this book is that it is not only memoir—and I say this as someone who loves memoir—but a meticulously researched, compassionately reported dive into the history of cancer research: more specifically, how scientists came to identify what caused this rare and horrible quirk in some families' histories, and what all that research means for individuals, and families, affected by cancer.
Although Ingrassia opens with his family's story in the first chapter, it's another dozen chapters before he returns to the subject—instead he introduces other families facing staggering counts of cancer diagnoses (and deaths), sets the scene for the scientists who are some of the heroes of the story, and begins to carefully and precisely walk lay readers through the complicated science behind cancer and gene mutations. I thought this might be a book to read in small pieces, but instead I tore through it in two days. Reminiscent of Hidden Valley Road, which explored research into schizophrenia via the lens of one family disproportionately affected by it, A Fatal Inheritance brings to life the drier work of lab science by putting it within the context of families—including his own—for whom cancer after cancer made the future uncertain.
It is at times hard to keep all of the names and dates straight, but Ingrassia is an award-winning journalist, and the skill and care he has put into this work shows. I'd be remiss not to note that although I found tremendous value in the research and science Ingrassia makes accessible to the lay reader, he observes toward the end that while this is a book about scientific discovery begun by two tireless doctors, it is even more a love letter to my family, written to preserve memories for my children, and their children, and the children after them. Because I will be gone someday as well, and I don't want these memories to be gone with me (loc. 3991).
4.5 stars; this will be a must-read for those seeking to better understand cancer and cancer research.
Thanks to the author and publisher for providing a review copy through NetGalley.
*I read an ARC, and quotes may not be final.
But the brilliance of this book is that it is not only memoir—and I say this as someone who loves memoir—but a meticulously researched, compassionately reported dive into the history of cancer research: more specifically, how scientists came to identify what caused this rare and horrible quirk in some families' histories, and what all that research means for individuals, and families, affected by cancer.
Although Ingrassia opens with his family's story in the first chapter, it's another dozen chapters before he returns to the subject—instead he introduces other families facing staggering counts of cancer diagnoses (and deaths), sets the scene for the scientists who are some of the heroes of the story, and begins to carefully and precisely walk lay readers through the complicated science behind cancer and gene mutations. I thought this might be a book to read in small pieces, but instead I tore through it in two days. Reminiscent of Hidden Valley Road, which explored research into schizophrenia via the lens of one family disproportionately affected by it, A Fatal Inheritance brings to life the drier work of lab science by putting it within the context of families—including his own—for whom cancer after cancer made the future uncertain.
It is at times hard to keep all of the names and dates straight, but Ingrassia is an award-winning journalist, and the skill and care he has put into this work shows. I'd be remiss not to note that although I found tremendous value in the research and science Ingrassia makes accessible to the lay reader, he observes toward the end that while this is a book about scientific discovery begun by two tireless doctors, it is even more a love letter to my family, written to preserve memories for my children, and their children, and the children after them. Because I will be gone someday as well, and I don't want these memories to be gone with me (loc. 3991).
4.5 stars; this will be a must-read for those seeking to better understand cancer and cancer research.
Thanks to the author and publisher for providing a review copy through NetGalley.
*I read an ARC, and quotes may not be final.
October 27, 2024
**Copy of this book provided by publisher in exchange for an honest review**
I can easily imagine myself giving this book 5 stars. Part memoir and part history on cancer research its both uplifting (advancement of science) and heartbreaking (childhood cancer, families affected by rare Li-Fraumeni Syndrome). The core of this book is an absolutely riveting tale of the discovery of tumor suppressing gene p53 and how our understanding of cancer changed through the years. But that 5-star book would probably be around 150-pages long. The book that I actually read was almost 100 pages longer (not including bibliography and acknowledgements) and tended to repeat information and add details that did not bring much to the story.
Writing about modern science is very difficult because I feel like the journey to spectacular breakthrough is usually pretty dull. You conduct rigorous experiments, repeat them day after day, check and cross-check your results, spend weeks drafting a paper, collaborate with other labs, present your results on conferences inspiring other scientist in the field. The process is usually laborious and repetitive so it make for rather uneventful popular literature. I feel like the scientist are an unsung heroes because of that too.
In this book the author does not shy away from providing you minute details of the scientific research process and since I am pretty familiar with it I found part of the story to be dragging. I applaud the idea of finally putting the scientists in the heart of the story as I do feel we need to show a bit more recognition to the people that are tirelessly expanding our knowledge but... I can't recommend this book. There are fascinating aspects of cancer research that are signaled here, an awe-inspiring perseverance of scientists that dare to challenge mainstream theories but its just written in such a boring way. If you are affected by Li-Fraumeni Syndrome or one of the cancerous gene mutations or you are scientist yourself I feel like you would appreciate this book more.
I can easily imagine myself giving this book 5 stars. Part memoir and part history on cancer research its both uplifting (advancement of science) and heartbreaking (childhood cancer, families affected by rare Li-Fraumeni Syndrome). The core of this book is an absolutely riveting tale of the discovery of tumor suppressing gene p53 and how our understanding of cancer changed through the years. But that 5-star book would probably be around 150-pages long. The book that I actually read was almost 100 pages longer (not including bibliography and acknowledgements) and tended to repeat information and add details that did not bring much to the story.
Writing about modern science is very difficult because I feel like the journey to spectacular breakthrough is usually pretty dull. You conduct rigorous experiments, repeat them day after day, check and cross-check your results, spend weeks drafting a paper, collaborate with other labs, present your results on conferences inspiring other scientist in the field. The process is usually laborious and repetitive so it make for rather uneventful popular literature. I feel like the scientist are an unsung heroes because of that too.
In this book the author does not shy away from providing you minute details of the scientific research process and since I am pretty familiar with it I found part of the story to be dragging. I applaud the idea of finally putting the scientists in the heart of the story as I do feel we need to show a bit more recognition to the people that are tirelessly expanding our knowledge but... I can't recommend this book. There are fascinating aspects of cancer research that are signaled here, an awe-inspiring perseverance of scientists that dare to challenge mainstream theories but its just written in such a boring way. If you are affected by Li-Fraumeni Syndrome or one of the cancerous gene mutations or you are scientist yourself I feel like you would appreciate this book more.
July 7, 2024
One of the core parts of my job as a molecular pathologist is characterizing genetic alterations in cancer biopsies. The TP53 gene is the most commonly mutated gene in all human cancers, and anytime I come across a TP53 mutation at heterozygous or greater frequency, I make a point to comment on the report about whether that particular mutation has ever been reported in Li-Fraumeni syndrome, the main topic of this excellent book, so that patients can be referred to genetic counseling and have follow-up testing if indicated. Chances are the mutation in their tumor tissue is somatically-derived, but we can't afford to miss the rare germline instances -- Li-Fraumeni syndrome is estimated to impact between 1 in 5,000-20,000 people. Among hereditary cancer predisposition syndromes, Li-Fraumeni is among the most devastating, given its high penetrance (the number of individuals carrying the mutation who will develop at least one cancer in their lifetimes is near 100% in women and around 70% in men) and the diversity of tumor types that can result (making screening and early detection difficult, and prevention basically impossible).
In A Fatal Inheritance, journalist Lawrence Ingrassia tells two overlapping stories. The first is the history of how doctors Frederick Pei Li and Joseph Fraumeni (for whom the syndrome is co-named) established a compelling case for hereditary cancer predisposition starting in the 1960s (which went against the prevailing narrative at the time that cancer was caused by infectious or environmental causes only -- cancer at its core is a genetic disease!), the the dawn of genetics in the 1970s and 1980s that led to the discovery of the TP53 gene, and the research teams who were able to definitively identify familial TP53 mutations in the early 1990s. I wish Ingrassia had continued the story from here, as the last 30+ years have led to many more research advances, the establishment of publicly-accessible databases to catalog and characterize various mutations, the continued importance of genetic counselors who work alongside oncologists and pathologists, and much more -- he did talk nebulously near the end about gene therapies that could insert functional copies of the TP53 gene into cancer, but that's about it.
The second main story is Ingrassia's own tragic family history. Ingrassia's mother, all three of his siblings (pictured on the cover alongside the author), and a nephew passed away from Li-Fraumeni-associated cancers. Li-Fraumeni is inherited in an autosomal dominant fashion, and the author is the only one of his siblings who didn't inherit the faulty copy of TP53 from his mother. The author, his brother, and his nephew were the only ones who had access to genetic testing, as that's another technological innovation that's only become available clinically and not just in research settings in the last ~20 years.
Overall, I thought this book was excellent, and I really appreciated Ingrassia's approach at both examining the medical history of Li-Fraumeni syndrome (I learned a lot) and his vulnerability and candor in sharing his own family story.
Further reading - hereditary cancer syndromes and other diseases:
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future - about a still-uncharacterized genetic syndrome
Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them by Gina Kolata - about Gerstmann-Straussler-Scheinker disease, a hereditary neurodegenerative prion disease
Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree - about BRCA1/BRCA2
The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA by Jorge Contreras
My statistics:
Book 146 for 2024
Book 1749 cumulatively
In A Fatal Inheritance, journalist Lawrence Ingrassia tells two overlapping stories. The first is the history of how doctors Frederick Pei Li and Joseph Fraumeni (for whom the syndrome is co-named) established a compelling case for hereditary cancer predisposition starting in the 1960s (which went against the prevailing narrative at the time that cancer was caused by infectious or environmental causes only -- cancer at its core is a genetic disease!), the the dawn of genetics in the 1970s and 1980s that led to the discovery of the TP53 gene, and the research teams who were able to definitively identify familial TP53 mutations in the early 1990s. I wish Ingrassia had continued the story from here, as the last 30+ years have led to many more research advances, the establishment of publicly-accessible databases to catalog and characterize various mutations, the continued importance of genetic counselors who work alongside oncologists and pathologists, and much more -- he did talk nebulously near the end about gene therapies that could insert functional copies of the TP53 gene into cancer, but that's about it.
The second main story is Ingrassia's own tragic family history. Ingrassia's mother, all three of his siblings (pictured on the cover alongside the author), and a nephew passed away from Li-Fraumeni-associated cancers. Li-Fraumeni is inherited in an autosomal dominant fashion, and the author is the only one of his siblings who didn't inherit the faulty copy of TP53 from his mother. The author, his brother, and his nephew were the only ones who had access to genetic testing, as that's another technological innovation that's only become available clinically and not just in research settings in the last ~20 years.
Overall, I thought this book was excellent, and I really appreciated Ingrassia's approach at both examining the medical history of Li-Fraumeni syndrome (I learned a lot) and his vulnerability and candor in sharing his own family story.
Further reading - hereditary cancer syndromes and other diseases:
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future - about a still-uncharacterized genetic syndrome
Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them by Gina Kolata - about Gerstmann-Straussler-Scheinker disease, a hereditary neurodegenerative prion disease
Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree - about BRCA1/BRCA2
The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA by Jorge Contreras
My statistics:
Book 146 for 2024
Book 1749 cumulatively
July 14, 2025
While I really enjoyed reading the book, this was not an easy book to read. To read about how, one by one, his siblings and some of their children died from various forms of cancer was very difficult. But as difficult as this book was to read, the author kept me engaged and wanting to read more. And I did, spending many hours past my bedtime reading about the saga of the discovery of Li–Fraumeni Syndrome.
Author Lawrence Ingrassia is a professional journalist and editor who worked for many prominent news organizations, specifically reporting on business. However, with three of his siblings having suffered from cancer with some of their children also dying from cancer, he wanted to know more about the disease that hunted his family.
The book starts off with author Ingrassia profiling his own family’s dreadful losses segueing into the work of Dr. Frederick P. Li and Dr. Joseph F. Fraumani Jr. who collected records from various sources to analyze the data to see if they could detect a pattern for the clusters of cancers they were seeing in families.
Finally, they were able to announce their results in their landmark paper titled “Rhabdomyosarcoma in Children: Epidemiologic Study and Identification of a Familial Cancer Syndrome,” published in the American Journal of Epidemiology. If you search for the article on your favorite search site, you’ll be able to find a copy to read. Their results definitively showed that there was a likely a genetic component to the clusters of cancers they witnessed in families.
While there is no cure for Li–Fraumani Syndrome, there are now ways to test to see if a person is carrying the gene that causes the syndrome, allowing both the patient and medical professionals to keep a constant vigilance.
As I mentioned, this is not an easy book to read but it is a totally fascinating one. Readers will get a solid understanding of how research is conducted, and the consequences of discovery, as not everyone potential carrier wants to know if they carry the gene. The book also has an extensive notes section that are well worth perusing.
This book would be of interest to anyone who is drawn to scientific discovery or the detection and management of cancer.
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
Author Lawrence Ingrassia is a professional journalist and editor who worked for many prominent news organizations, specifically reporting on business. However, with three of his siblings having suffered from cancer with some of their children also dying from cancer, he wanted to know more about the disease that hunted his family.
The book starts off with author Ingrassia profiling his own family’s dreadful losses segueing into the work of Dr. Frederick P. Li and Dr. Joseph F. Fraumani Jr. who collected records from various sources to analyze the data to see if they could detect a pattern for the clusters of cancers they were seeing in families.
Finally, they were able to announce their results in their landmark paper titled “Rhabdomyosarcoma in Children: Epidemiologic Study and Identification of a Familial Cancer Syndrome,” published in the American Journal of Epidemiology. If you search for the article on your favorite search site, you’ll be able to find a copy to read. Their results definitively showed that there was a likely a genetic component to the clusters of cancers they witnessed in families.
While there is no cure for Li–Fraumani Syndrome, there are now ways to test to see if a person is carrying the gene that causes the syndrome, allowing both the patient and medical professionals to keep a constant vigilance.
As I mentioned, this is not an easy book to read but it is a totally fascinating one. Readers will get a solid understanding of how research is conducted, and the consequences of discovery, as not everyone potential carrier wants to know if they carry the gene. The book also has an extensive notes section that are well worth perusing.
This book would be of interest to anyone who is drawn to scientific discovery or the detection and management of cancer.
[Thank you to NetGalley and the author for the advanced ebook copy in exchange for my honest and objective opinion which I have given here.]
July 5, 2024
This was a fascinating non-fiction about the search for finding answers about the frightening run of cancer in certain families. In 1967, several researchers wanted to investigate the possibility of a genetic cause to some cancers. The investigators were dismissed, but they eventually found the genetic link in some families. Unfortunately, this didn’t change much of anything, even today, in the treatment of the cancer itself.
What made this story so fascinating is that the author is a member of one of these afflicted families. He lost his mother, all of his siblings, his nephew, and many, many cousins to this relentless disease, most of them at young ages. This personalization of this medical mystery made the story compelling, but most of all, heartbreaking. This is an excellent book for those who are interested in medical research.
What made this story so fascinating is that the author is a member of one of these afflicted families. He lost his mother, all of his siblings, his nephew, and many, many cousins to this relentless disease, most of them at young ages. This personalization of this medical mystery made the story compelling, but most of all, heartbreaking. This is an excellent book for those who are interested in medical research.
May 9, 2024
There are many reviews of this book that will be better than this one - if you are looking for a comprehensive break down of this magnificent book, those will be perfect for you [and I encourage you to seek them out]. THIS review is written, quite simply, from pure emotion.
My heart immediately broke for the author - I cannot even imagine losing almost all of my family over the years [starting with his Mom when he was 10 {I believe} ], and his story alone is devastating and heartbreaking.
THEN, he takes you down the rabbit hole of the discovery of genetic cancer [Li-Fraumeni Syndrome] and the endless [and often seemingly hopeless] work those men [Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr., whom the syndrome is named after] and ALL the amazing Dr.s that have come [and continue to come] since, in search of a cure [and a why].
We also meet the families afflicted with this syndrome [especially "Family A", who are essentially ground zero in this story], and on the emotions that flowed then. The amount of cancer and death amongst these families is unfathomable, and by the end of the book, you will be as dry as a desert from all the tears you have shed. And them you read the final chapter and just when you think you cannot cry one more year the ending will completely wreck you and you will never look at your family and those around you that you love the same way again.
I was privileged to receive an audiobook ARC and I am so glad I did - the narrator [now one of my favorites] did an excellent job and even his voice broke at times at the sorrow being played out in these pages. His own humanity added to the story and made it that much better.
I must also compliment the narrator's ability to whip off all the medical terms correctly, even in the emotional parts. Some of the tests [and research] and cancer names are tongue -twisting on a good day, and Mr. Wayne handled them with dexterity and perfection. Very well done.
#fightlikecharlie
Thank you to NetGalley, Lawrence Ingrassia, Roger Wayne - Narrator, Henry Holt & Company, and Macmillan Audio for providing the eBook and audiobook ARC's in exchange for an honest review.
My heart immediately broke for the author - I cannot even imagine losing almost all of my family over the years [starting with his Mom when he was 10 {I believe} ], and his story alone is devastating and heartbreaking.
THEN, he takes you down the rabbit hole of the discovery of genetic cancer [Li-Fraumeni Syndrome] and the endless [and often seemingly hopeless] work those men [Dr. Frederick Pei Li and Dr. Joseph Fraumeni Jr., whom the syndrome is named after] and ALL the amazing Dr.s that have come [and continue to come] since, in search of a cure [and a why].
We also meet the families afflicted with this syndrome [especially "Family A", who are essentially ground zero in this story], and on the emotions that flowed then. The amount of cancer and death amongst these families is unfathomable, and by the end of the book, you will be as dry as a desert from all the tears you have shed. And them you read the final chapter and just when you think you cannot cry one more year the ending will completely wreck you and you will never look at your family and those around you that you love the same way again.
I was privileged to receive an audiobook ARC and I am so glad I did - the narrator [now one of my favorites] did an excellent job and even his voice broke at times at the sorrow being played out in these pages. His own humanity added to the story and made it that much better.
I must also compliment the narrator's ability to whip off all the medical terms correctly, even in the emotional parts. Some of the tests [and research] and cancer names are tongue -twisting on a good day, and Mr. Wayne handled them with dexterity and perfection. Very well done.
#fightlikecharlie
Thank you to NetGalley, Lawrence Ingrassia, Roger Wayne - Narrator, Henry Holt & Company, and Macmillan Audio for providing the eBook and audiobook ARC's in exchange for an honest review.
May 2, 2025
Best Award Book of the Year:
A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery
Lawrence Ingrassia orchestrates a chilling story that is half thriller and familiar homage. Having lost the closest members of his family---at different times in his life---he questions the reason why his family is the benevolent honor of cancer. Bad luck or family curse perhaps are some theories. Many people in a precarious balance are thrust into this same search for some hairy thing called, "Why."
“Cancer is a disease of the aging. Four out of ten Americans get cancer during their lifetime.”
—Lawrence Ingrassia
A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery
Lawrence Ingrassia orchestrates a chilling story that is half thriller and familiar homage. Having lost the closest members of his family---at different times in his life---he questions the reason why his family is the benevolent honor of cancer. Bad luck or family curse perhaps are some theories. Many people in a precarious balance are thrust into this same search for some hairy thing called, "Why."
“Cancer is a disease of the aging. Four out of ten Americans get cancer during their lifetime.”
—Lawrence Ingrassia
This entire review has been hidden because of spoilers.
May 5, 2024
“A heartbreaking story of family loss and an inspiring story of scientific achievement”
The quote above is author Lawrence Ingrassia’s summary description of cancer research during the last six decades, especially the Li-Fraumeni syndrome that is the focus of A Fatal Inheritance. It is also an excellent description of his book, which was outstanding on both topics and which I would recommend to a very broad audience.
The stories of the families who experience the results of their “fatal inheritance” were heartbreaking even for me, and I do not know any of the people affected. It is hard to imagine being a member of the family and living through it, and I suspect that the author, who DID live through it in his own family, shed more than one tear as he wrote them. The illnesses and deaths are hard to take, such as the eight-year-old girl battling her second cancer, but there are also other understandable but perhaps less expected episodes. I was touched by a father recommending that his son, who had experienced several cancers growing up and lost several relatives to cancers, not marry and have children. The son responds that if his father had done that he himself would not be sitting there that day! In another family with widespread cancer a woman happily tells her family that a test has shown she does not have the gene in question only to be greeted with anger by her cousin’s obviously envious husband.
The descriptions of the scientific research, controversies, and discoveries were equally compelling. For a layperson like me, the heat of the disputes between the scientists who were pursuing genetic connections to cancer and those who were certain the cancers were caused by viruses was fascinating and eye-opening. I learned quite a bit about the subject, which was presented in a way that readers unfamiliar with this field of biology can understand, but I did not feel, as I often do, that the author was talking down to me. It made me smile and admire the researchers even more to read about their gathering of data like family histories in the years before the internet and largescale computers simplified such pursuits to such a degree that we tend today to take it for granted. Also impressive was the cost of such research, e.g., Warner Lambert pledged FORTY million dollars to help pay for simply the last phase of clinical trials for a test of a new drug.
Having a family member develop cancer is difficult for any family. The distress caused when multiple members suffer and often die from cancer is hard to imagine, especially when the cancer develops in young children, as it often does in Li-Fraumeni syndrome. I thank the author for sharing his family’s story and for educating readers like me on the connection between genes and cancer.
I received an advance review copy of A Fatal Inheritance from NetGalley and Henry Holt and Company.
The quote above is author Lawrence Ingrassia’s summary description of cancer research during the last six decades, especially the Li-Fraumeni syndrome that is the focus of A Fatal Inheritance. It is also an excellent description of his book, which was outstanding on both topics and which I would recommend to a very broad audience.
The stories of the families who experience the results of their “fatal inheritance” were heartbreaking even for me, and I do not know any of the people affected. It is hard to imagine being a member of the family and living through it, and I suspect that the author, who DID live through it in his own family, shed more than one tear as he wrote them. The illnesses and deaths are hard to take, such as the eight-year-old girl battling her second cancer, but there are also other understandable but perhaps less expected episodes. I was touched by a father recommending that his son, who had experienced several cancers growing up and lost several relatives to cancers, not marry and have children. The son responds that if his father had done that he himself would not be sitting there that day! In another family with widespread cancer a woman happily tells her family that a test has shown she does not have the gene in question only to be greeted with anger by her cousin’s obviously envious husband.
The descriptions of the scientific research, controversies, and discoveries were equally compelling. For a layperson like me, the heat of the disputes between the scientists who were pursuing genetic connections to cancer and those who were certain the cancers were caused by viruses was fascinating and eye-opening. I learned quite a bit about the subject, which was presented in a way that readers unfamiliar with this field of biology can understand, but I did not feel, as I often do, that the author was talking down to me. It made me smile and admire the researchers even more to read about their gathering of data like family histories in the years before the internet and largescale computers simplified such pursuits to such a degree that we tend today to take it for granted. Also impressive was the cost of such research, e.g., Warner Lambert pledged FORTY million dollars to help pay for simply the last phase of clinical trials for a test of a new drug.
Having a family member develop cancer is difficult for any family. The distress caused when multiple members suffer and often die from cancer is hard to imagine, especially when the cancer develops in young children, as it often does in Li-Fraumeni syndrome. I thank the author for sharing his family’s story and for educating readers like me on the connection between genes and cancer.
I received an advance review copy of A Fatal Inheritance from NetGalley and Henry Holt and Company.
November 26, 2024
If history of science crossed with true horror stories is your thing (it's one of mine), this book will be unputdownable for you. I had no idea people used to doubt a genetic component to cancer, and I had never heard of Li-Fraumeni Syndrome (and probably your doctor hasn't either), but thank heavens some dogged researchers were intrigued enough--or met heartbreaking patient families enough--to persist in researching something the rest of the scientific community dismissed as coincidence or chance.
There are a *lot* of deaths in this book, so if you have a loved one going through cancer or are facing it yourself, you may want to stay away.
There are a *lot* of deaths in this book, so if you have a loved one going through cancer or are facing it yourself, you may want to stay away.
October 28, 2023
An excellent book on the history of the discovery of different genes with mutations linked to hereditary cancer risks. A person who inherits a genetic mutation from their parent will have a higher lifetime risk for certain types of cancer. A family with hereditary cancer may have many family members who have been diagnosed. The author tells the story of his family, which is heartbreaking, while also shows the tremendous courage and spirit his family members had. This story weaves his and others who have suffered similar losses along with the research and dedication of so many dedicated to ending this dreadful disease without it being dry at all. A must read for any who has suffered any loss in their family. Thank you to NetGalley, the author and publisher for an advanced copy in exchange for my honest opinion.
May 16, 2024
Story and Content: A
Writing: A
Narration: A
Best Aspect: Very interesting personal stories and facts about cancer and genetics.
Worst Aspect: There is no way to have a book with this many terminal illnesses can be uplifting.
Recommend: Yes.
June 6, 2025
Such an interesting but sad story. Sad to learn about families with Li Fraumeni syndrome, who lost so many to cancer at such early ages. At the same, interesting to learn about how research into these families informed cancer research. I think the author speaking of his own family helped make this story more personal and less dry than it could’ve been.
July 16, 2024
4.5 stars
April 29, 2024
A fascinating and extremely well researched book about the work to discover the link between genetic abnormalities and cancer. The author's own family was tragically impacted by cancer with a genetic link and the way he weaves his own story into the narrative works well. The author spent decades as a journalist and editor, and it shows in the quality of the research and the flow of the story. Fans of The Best Minds and Hidden Valley Road will enjoy this as well. Thank you to the publishers and NetGalley for the ARC.
May 1, 2025
Part family memoir, part history of the discovery of Li-Fraumeni Syndrome (LFS)--a genetic mutation that leads to extreme cancer susceptibility in families.
The history of science is a fascinating thing, and I was surprised to learn how recent our understanding of genetic/hereditary cancer risk, and specifically the P53 gene, is. The stories of families can get a little repetitive (lots of people get cancer(s) and die in this book), but I never found myself bored. It probably help that I was listening to the audiobook, as I think I would have lost momentum with reading this one as a physical book. Still, it's a very interesting and niche topic that I am glad to know more about. It also brings to light how much progress we've made in treating cancer, and how much more we have left to learn. I'm sure genetic treatment, and cancer treatment in general, will progress a lot in my lifetime!
The history of science is a fascinating thing, and I was surprised to learn how recent our understanding of genetic/hereditary cancer risk, and specifically the P53 gene, is. The stories of families can get a little repetitive (lots of people get cancer(s) and die in this book), but I never found myself bored. It probably help that I was listening to the audiobook, as I think I would have lost momentum with reading this one as a physical book. Still, it's a very interesting and niche topic that I am glad to know more about. It also brings to light how much progress we've made in treating cancer, and how much more we have left to learn. I'm sure genetic treatment, and cancer treatment in general, will progress a lot in my lifetime!
January 11, 2024
"A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery" by Lawrence Ingrassia is a compelling and thought-provoking exploration of a family's medical mystery, intertwining personal narratives with the broader implications of genetic research. The book stands out for its meticulous research, the author's empathetic storytelling, and the ethical questions raised by the intersection of medicine and personal privacy.
One commendable aspect of the book is Lawrence Ingrassia's dedication to unraveling the medical mystery that affected generations of a single family. The author's thorough research and investigative journalism bring to light the complexities of genetic disorders and the challenges faced by individuals grappling with the unknown. The narrative skillfully weaves together personal stories with scientific discoveries, creating a compelling and informative account.
Ingrassia's writing style is engaging and accessible, allowing readers to connect with the individuals at the center of the medical mystery. The author navigates the delicate balance between scientific explanations and the emotional impact on the family, ensuring that the narrative remains relatable and compelling. The inclusion of ethical considerations adds depth to the exploration, prompting readers to contemplate the implications of genetic research on personal privacy and medical advancements.
However, some readers may find the scientific details and medical terminology challenging to follow, especially if they lack a background in genetics or medicine. While the author strives to make the information accessible, individuals seeking a more straightforward narrative may find certain sections of the book demanding.
In conclusion, "A Fatal Inheritance" is a thought-provoking and meticulously researched exploration of a family's medical journey. Lawrence Ingrassia's empathetic storytelling and ethical considerations elevate the book beyond a mere medical mystery, creating a narrative that resonates with broader implications for genetic research and personal privacy. While the scientific details may be intricate, the overall impact of the book lies in its ability to blend human stories with the complexities of modern medicine.
One commendable aspect of the book is Lawrence Ingrassia's dedication to unraveling the medical mystery that affected generations of a single family. The author's thorough research and investigative journalism bring to light the complexities of genetic disorders and the challenges faced by individuals grappling with the unknown. The narrative skillfully weaves together personal stories with scientific discoveries, creating a compelling and informative account.
Ingrassia's writing style is engaging and accessible, allowing readers to connect with the individuals at the center of the medical mystery. The author navigates the delicate balance between scientific explanations and the emotional impact on the family, ensuring that the narrative remains relatable and compelling. The inclusion of ethical considerations adds depth to the exploration, prompting readers to contemplate the implications of genetic research on personal privacy and medical advancements.
However, some readers may find the scientific details and medical terminology challenging to follow, especially if they lack a background in genetics or medicine. While the author strives to make the information accessible, individuals seeking a more straightforward narrative may find certain sections of the book demanding.
In conclusion, "A Fatal Inheritance" is a thought-provoking and meticulously researched exploration of a family's medical journey. Lawrence Ingrassia's empathetic storytelling and ethical considerations elevate the book beyond a mere medical mystery, creating a narrative that resonates with broader implications for genetic research and personal privacy. While the scientific details may be intricate, the overall impact of the book lies in its ability to blend human stories with the complexities of modern medicine.
March 19, 2024
A Fatal Inheritance is a really powerful combination of the scientific advancement of genetically inherited cancer risk and reflection of the personal impact it has had on the author’s family. More narrow in focus than The Emperor of All Maladies, this book focuses specifically on Li-Fraumeni Syndrome and mutations on the P53 gene that are genetically inherited and result in dramatically higher rates of cancer and at younger ages for many people that inherit it. The book charts the history from when Li and Fraumeni first suspected that cancer risk could be genetically inherited, through the advancement of knowledge, preventative testing and treatment, to the latest advancements that may someday help eliminate or manage the P53 gene. The book is both helpful and devastating. As someone who lost her mother at a relatively young age there were moments in this book where I wanted to cry and throw up all at the same time. For the loss of my mother, and for my fears for myself, despite no indication of genetic risk in my family. If you have personally been impacted by the loss of a loved one this could be a really difficult read for you. If you have a history of cancer in your family it might be enlightening and scary. No matter what, it’s really well done and written so that a reader that is not versed in medical language understands the science and story Ingrassia shares. A complimentary copy of this book was provided by the publisher. All thoughts and opinions are my own.
July 5, 2024
P53. That's the new piece of knowledge I acquired after reading this fascinating book about hereditary genetic mutations that lead to widespread early cancer diagnoses in families. Ingrassia weaves his own family's history in with the advancement of research into causes of cancer, from the 1960's when cancer was thought to be primarily caused by a virus into the 21st century where gene therapies and genetic testing are possible.
The heart of this story is the groundbreaking work done in the 1970's-1990's to identify a gene, P53, that normally inhibits cancer cells from spreading. Drs Li and Fraumeni identified families where cancer struck early and often and eventually science helped pinpoint a genetic mutation in the P53 gene, allowing family members to detect whether they were likely to develop cancers Of course, there is still a long way to go from knowing that you are 80-90% likely to develop cancer SOMEWHERE to being able to do something about it - but Ingrassia holds out some hope in the current areas of research and treatment.
As someone who has spent many years fundraising for cancer breakthroughs, this was an exciting read for me. 4.5 stars, rounded up.
The heart of this story is the groundbreaking work done in the 1970's-1990's to identify a gene, P53, that normally inhibits cancer cells from spreading. Drs Li and Fraumeni identified families where cancer struck early and often and eventually science helped pinpoint a genetic mutation in the P53 gene, allowing family members to detect whether they were likely to develop cancers Of course, there is still a long way to go from knowing that you are 80-90% likely to develop cancer SOMEWHERE to being able to do something about it - but Ingrassia holds out some hope in the current areas of research and treatment.
As someone who has spent many years fundraising for cancer breakthroughs, this was an exciting read for me. 4.5 stars, rounded up.
November 25, 2024
Cancer is about the worst illness that can strike a healthy body. Some advanced treatments have been developed in recent years but many treatment therapies are still like blunt instruments. Chemotherapy, for example, attacks all dividing cells, often with debilitating side effects.
This book illuminates two rare and unfortunate families who are genetically predisposed to developing cancer. It can strike at any time, at any age. It can strike numerous times. Lives are cut short. Families are plagued by the nightmare that more of their relations will die. Both survivors and their kin live with a dread of recurrence. The author's family has this plague-like malady. He has lost his mother, three of his four siblings, and a nephew. It was painful to read of their suffering.
The other aspect of the book is the search for a cure. Without knowledge of genetics, it was impossible to solve the mystery of afflicted families. Slowly, knowledge was acquired by a few dedicated researchers. Progress was made. But it is still not complete. The science of genetics is maddeningly complicated. More research lies ahead. An effective cure is elusive.
This book illuminates two rare and unfortunate families who are genetically predisposed to developing cancer. It can strike at any time, at any age. It can strike numerous times. Lives are cut short. Families are plagued by the nightmare that more of their relations will die. Both survivors and their kin live with a dread of recurrence. The author's family has this plague-like malady. He has lost his mother, three of his four siblings, and a nephew. It was painful to read of their suffering.
The other aspect of the book is the search for a cure. Without knowledge of genetics, it was impossible to solve the mystery of afflicted families. Slowly, knowledge was acquired by a few dedicated researchers. Progress was made. But it is still not complete. The science of genetics is maddeningly complicated. More research lies ahead. An effective cure is elusive.
May 20, 2024
While this book is classified as a memoir, it is so much more than that. Lawrence Ingrassia, the author, comes from a family with an unusually high rate of cancer, leading to significantly reduced life spans. As a journalist, he naturally began to investigate and the result is this impressive book. The author delves into many aspects of cancer, including discovery of why his family and many others have such high rates of cancer. He explores the research that is done in labs around the world looking for answers to prevention and cures of cancers. He also explores the heartbreak and grief of loss that cancer brings to families. This book is a must read if you are interested in cancer research or if you loved "The Emperor of All Maladies."
May 20, 2024
Medical schools love teaching inherited cancer syndromes to first year med students. They teach the necessity of taking a good family history and listening to the patient. But these syndromes also bring up issues of medical ethics and testing of family members.
Ingrassia demonstrates in real time how a familial cancer syndrome affects families, physicians, and scientists. He examines the early beginnings of genetics and genetic testing and takes us to the modern age.
This book is heartbreaking and moving. It offers a glimpse into the future of genetic medicine.
Ingrassia demonstrates in real time how a familial cancer syndrome affects families, physicians, and scientists. He examines the early beginnings of genetics and genetic testing and takes us to the modern age.
This book is heartbreaking and moving. It offers a glimpse into the future of genetic medicine.
November 19, 2024
This book is equal parts devastating and fascinating. I cried several times with the author as new diagnosis hit his and other families. I can’t even begin to imagine how painful the lives of people going through this are. The research and history of the study on genetics and cancer was also so interesting. The combination of the research and the heart of the memoir was perfect.
March 4, 2024
Highly recommended. Ingrassia has produced an easy-to-read history of cancer as an hereditary illness. Bravo!!
December 21, 2024
This is an interesting non-fiction book about a family who discovered that many of their family members came down with cancer and how they lived and coped with the disease.
July 14, 2024
This was a Giveaway win and I was pleasantly surprised to find that the book was very interesting. It is not like a lot of books on medical topics that are written in put-you-to-sleep jargon. Ingrassia does a great job of continually explaining each acronym, test, cancer type or syndrome in layman terms as well as outlining the research journey of the many scientists, geneticists, and oncologists who have thus far had a part in the advancement of cancer detection and treatment through the decades. Sadly, because of cancer's myriad types and the way it can uniquely affect the human genome, the tireless research continues to find a cure, treatment, or preventative drug that works across the cancer spectrum with no or only minimum side effects. Many times a multi-generational story can get confusing, so I appreciated the author's reiteration of each family member's name, pertinent medical summary, and relationship to other family members. There was also a helpful Family Tree map at the beginning of the book. Maybe because my husband's family has a strong history of colorectal cancer, Mr. Ingrassia's personal family story resonated. I would recommend this as an important read for anyone with an extensive family history of cancer.
June 16, 2024
Everything I read about genes and cells and cancer and heredity interests me. This book about the “discovery” of heritable cancer was no exception.
The author is a journalist who writes an intimate story about cancer inheritance in his own family—his mother, sisters, brother, nephew, all develop tumors in various parts of their bodies, all at young ages. Scientists discover the gene responsible, not for causing the cancer, but for allowing a cancer to take hold. The author himself did not inherit the gene that his 3 siblings did. The gene discussed in this book is similar to the BRCA gene that makes one susceptible to breast cancer, but is not nearly as narrow in scope. Women with the BRCA gene may opt for a double mastectomy to vastly improve their odds, but the gene covered in this book can allow cancers to develop anywhere and everywhere. Quite sad to be a carrier.
Keytruda was just coming on the market as his family members died, so did not impact this story.
The author is a journalist who writes an intimate story about cancer inheritance in his own family—his mother, sisters, brother, nephew, all develop tumors in various parts of their bodies, all at young ages. Scientists discover the gene responsible, not for causing the cancer, but for allowing a cancer to take hold. The author himself did not inherit the gene that his 3 siblings did. The gene discussed in this book is similar to the BRCA gene that makes one susceptible to breast cancer, but is not nearly as narrow in scope. Women with the BRCA gene may opt for a double mastectomy to vastly improve their odds, but the gene covered in this book can allow cancers to develop anywhere and everywhere. Quite sad to be a carrier.
Keytruda was just coming on the market as his family members died, so did not impact this story.
May 20, 2024
Lawrence Ingrassia is a retired journalist for the Wall Street Journal. His older brother, Paul, was at the WSJ before him and retired in his 60’s after a long career. It’s important to know Larry Ingressia’s occupation because it helps to explain his beautiful and cogent writing. You need to know about Paul’s life and death, because this book, “A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery” is about his and his family’s many years of fights with cancer.
The Ingressia brothers also had two younger sisters. By 1990, both younger sisters and their mother had died of cancer. By 2020, Paul and his 39 year old son were also dead from cancer. This is not a plot reveal; their deaths and those of many others are the reason the book written.
The Ingrassia family had been hard hit by cancer since the 1940’s. All ages and all types of cancers hit this poor family. Soon, here and there, doctors and medical researchers set out to track these deaths and a term “Li-Fraumeni” after 2 doctors who put parts of the medical mystery together. But other scientists in the US, Canada, and France were looking at hereditary causes of cancer.
The Ingressia brothers also had two younger sisters. By 1990, both younger sisters and their mother had died of cancer. By 2020, Paul and his 39 year old son were also dead from cancer. This is not a plot reveal; their deaths and those of many others are the reason the book written.
The Ingrassia family had been hard hit by cancer since the 1940’s. All ages and all types of cancers hit this poor family. Soon, here and there, doctors and medical researchers set out to track these deaths and a term “Li-Fraumeni” after 2 doctors who put parts of the medical mystery together. But other scientists in the US, Canada, and France were looking at hereditary causes of cancer.
June 2, 2024
This book blends the author’s personal experience, stories from other families with inherited cancers, and a chronology of the scientific world’s progress in the study of inherited cancers. While I come from a science background, I think you can enjoy this novel and its detail without being too familiar with scientific jargon. Ingrassia expertly moves between medical information and compassionate telling of personal struggles with cancer which makes this book a provoking and worthwhile read.
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