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Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree
2015 ALA Notable Book
Would you cut out your healthy breasts and ovaries if you thought it might save your life? That’s not a theoretical question for journalist Lizzie Stark’s relatives, who grapple with the horrific legacy of cancer built into the family DNA, a BRCA mutation that has robbed most of her female relatives of breasts, ovaries, peace of mind, or life itself. In Pandora’s DNA, Stark uses her family’s experience to frame a larger story about the so-called breast cancer genes, exploring the morass of legal quandaries, scientific developments, medical breakthroughs, and ethical concerns that surround the BRCA mutations, from the troubling history of prophylactic surgery and the storied origins of the boob job to the landmark lawsuit against Myriad Genetics, which held patents on the BRCA genes every human carries in their body until the Supreme Court overturned them in 2013. Although a genetic test for cancer risk may sound like the height of scientific development, the treatment remains crude and barbaric. Through her own experience, Stark shows what it’s like to live in a brave new world where gazing into a crystal ball of genetics has many unintended consequences.
Would you cut out your healthy breasts and ovaries if you thought it might save your life? That’s not a theoretical question for journalist Lizzie Stark’s relatives, who grapple with the horrific legacy of cancer built into the family DNA, a BRCA mutation that has robbed most of her female relatives of breasts, ovaries, peace of mind, or life itself. In Pandora’s DNA, Stark uses her family’s experience to frame a larger story about the so-called breast cancer genes, exploring the morass of legal quandaries, scientific developments, medical breakthroughs, and ethical concerns that surround the BRCA mutations, from the troubling history of prophylactic surgery and the storied origins of the boob job to the landmark lawsuit against Myriad Genetics, which held patents on the BRCA genes every human carries in their body until the Supreme Court overturned them in 2013. Although a genetic test for cancer risk may sound like the height of scientific development, the treatment remains crude and barbaric. Through her own experience, Stark shows what it’s like to live in a brave new world where gazing into a crystal ball of genetics has many unintended consequences.
336 pages, Hardcover
First published October 1, 2014
About the author
Lizzie Stark
8 books44 followersLizzie Stark is a participation designer and the author of three nonfiction books, Egg: A Dozen Ovatures , Pandora’s DNA and Leaving Mundania. Her writing has been featured in the Washington Post, the Daily Beast, i09, and the Philadelphia Inquirer, among other publications. She lives in Massachusetts.
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Displaying 1 - 30 of 33 reviews
November 2, 2014
(This is from an article I posted on BrooklineHub.com)
There is a particular story in Lizzie Stark’s powerful new book Pandora’s DNA that would have been a fitting scene in one of the marathon of horror movies I watched on Halloween this past Friday night. I’m not going to share the details of the story because I believe that every woman (and every man who cares about women) should read this book. You’ll know the story I’m referring to when you read it. Just be glad that you live in an age of general anesthesia.
What’s interesting is that in the realm of breast cancer treatment and prevention, we’ve definitely come a long way, baby…yet there is still no cure and the preventive methods still involve imperfect science: the ubiquitous but unreliable proscription for breast self-exams; the mammogram's rate of false positive results, especially among younger women with dense breast tissue; and the mutilation of women’s bodies as a prophylactic. The discovery of the BRCA1 and BRCA2 genes in 1995 have made it possible for women with a history of breast cancer in their family to make proactive decisions about insuring their own breast health but it’s also opened up a new can of worms—women who are lucky enough to afford genetic testing are asking themselves, should I get tested? What will I do if I find out that I’m positive? (those with BRCA1 and BRCA2 genes have a 40-65% lifetime chance of developing breast cancer; women without the BRCA mutation have a 12% chance.) For those of childbearing age, as Stark is, there’s the question do I risk passing on this genetic mutation to my future children?
Stark uses the matrilineal side of her own family tree to tell a compelling story of the devastation that breast cancer can wreak, but also the hope that with each generation the story will have a happier ending. Stark—whose mother, grandmother, and two great-aunts were all diagnosed with breast cancer—is 27 when she gets the genetic test done. The result is positive and though it is not a cancer diagnosis, to Stark it certainly feels like one. She was too young to remember her mother’s first breast cancer diagnosis and her mastectomy, but she recalls her mother’s many subsequent hospitalizations with thyroid cancer, the removal of her thyroid, as well as a hysterectomy, appendectomy, and oophorectomy. She also lives with the story of her great-aunt Trudy, who upon finding out she has breast cancer, opts not to get a radical mastectomy and dies at age 31. Her great-aunt El develops both breast and ovarian cancer, but unlike Trudy El, a mother of four young children, opts to get a mastectomy as well as undergo radiation and chemotherapy, the latter being a fairly new treatment at the time. Later, when Stark's mother Gretchen is diagnosed with breast cancer, Stark’s Aunt Cris decides to have a prophylactic mastectomy.
Decades later, Stark will face a similar decision, although with a few additional but not ideal options. Having tested positive for the BRCA mutation, she could either submit herself to repeated breast exams, mammograms, MRIs, and follow-up tests to investigate any findings, no matter how benign they might ultimately be; she could remove her breasts and possibly her ovaries; or she could undergo chemoprevention, which would cause temporary menopause and lessen her risk of cancer—at least for a while. Stark, an otherwise healthy young woman and newlywed with her first book contract, opts for a mastectomy and breast reconstruction.
As the book's subtitle suggests, Stark places her personal story in an historical and scientific context, exploring the history of breast cancer and the serpentine, sometimes downright strange, journey that has led to modern treatments. The first allusion to breast cancer is found in the ancient Smith Papyrus, written in the seventeenth-century BCE, which includes case forty-five, “swellings on the breast, large, spreading, and hard; touching them is like touching a ball of wrappings, or they may be compared to the unripe hemat fruit, which is cool and hard to the touch.” The cure? “There is none.” Stark also writes about Myriad Genetics’ controversial decision to patent the BRCA gene, and the media hype around Angelina Jolie’s editorial in The New York Times about her prophylactic mastectomy and what the media referred to as the “Jolie Effect”—the supposition that women would rush out to get mastectomies because they were influenced by the actress. Then there are the issues that arise if a woman opts for reconstructive surgery after a mastectomy. This decision comes with a host of new questions: go larger or smaller? Maintain your original nipples or get Barbie-smooth breasts? Get a tissue flap—a procedure that involves using tissue from your abdomen or buttocks to build new breasts—or get synthetic implants?
Pandora’s DNA is a fascinating story that is well told, even if at times it’s a difficult read. Like most women the fear of breast cancer runs deep in me—despite the fact that I don’t have a family history, my best friend had it when she was 40 and each time I get a breast exam I hold my breath because really, it could happen to anyone. People who have the BRCA gene are at a higher risk, but none of us are completely immune. There’s a heart-wrenching moment (one among many) in Stark’s personal story that particularly moved me. She is at the hospital about to get her prophylactic mastectomy. She goes into the bathroom to take one last look at her breasts in the bathroom mirror. She chastises herself for not taking a picture of them and worries she will forget what they look and feel like.
But there are also bright spots in Stark’s story. The fact that this specter of cancer has hung over Stark all her life has made her more dogged in her pursuit of new experiences and wish fulfillment. She is in a loving marriage, she has an advanced degree from Columbia University Graduate School of Journalism, Pandora’s DNA is her second published book—and she’s only in her early 30s. When time is uncertain, we tend to make the most of it.
After finishing Pandora’s DNA I couldn’t help but think that with all the strides that have been made in breast cancer research and genetic testing, it strikes me as shocking and barbaric that in 2014 removing a woman’s breasts is still a recommended method to prevent or treat cancer. One hopes that future women will have better options.
There is a particular story in Lizzie Stark’s powerful new book Pandora’s DNA that would have been a fitting scene in one of the marathon of horror movies I watched on Halloween this past Friday night. I’m not going to share the details of the story because I believe that every woman (and every man who cares about women) should read this book. You’ll know the story I’m referring to when you read it. Just be glad that you live in an age of general anesthesia.
What’s interesting is that in the realm of breast cancer treatment and prevention, we’ve definitely come a long way, baby…yet there is still no cure and the preventive methods still involve imperfect science: the ubiquitous but unreliable proscription for breast self-exams; the mammogram's rate of false positive results, especially among younger women with dense breast tissue; and the mutilation of women’s bodies as a prophylactic. The discovery of the BRCA1 and BRCA2 genes in 1995 have made it possible for women with a history of breast cancer in their family to make proactive decisions about insuring their own breast health but it’s also opened up a new can of worms—women who are lucky enough to afford genetic testing are asking themselves, should I get tested? What will I do if I find out that I’m positive? (those with BRCA1 and BRCA2 genes have a 40-65% lifetime chance of developing breast cancer; women without the BRCA mutation have a 12% chance.) For those of childbearing age, as Stark is, there’s the question do I risk passing on this genetic mutation to my future children?
Stark uses the matrilineal side of her own family tree to tell a compelling story of the devastation that breast cancer can wreak, but also the hope that with each generation the story will have a happier ending. Stark—whose mother, grandmother, and two great-aunts were all diagnosed with breast cancer—is 27 when she gets the genetic test done. The result is positive and though it is not a cancer diagnosis, to Stark it certainly feels like one. She was too young to remember her mother’s first breast cancer diagnosis and her mastectomy, but she recalls her mother’s many subsequent hospitalizations with thyroid cancer, the removal of her thyroid, as well as a hysterectomy, appendectomy, and oophorectomy. She also lives with the story of her great-aunt Trudy, who upon finding out she has breast cancer, opts not to get a radical mastectomy and dies at age 31. Her great-aunt El develops both breast and ovarian cancer, but unlike Trudy El, a mother of four young children, opts to get a mastectomy as well as undergo radiation and chemotherapy, the latter being a fairly new treatment at the time. Later, when Stark's mother Gretchen is diagnosed with breast cancer, Stark’s Aunt Cris decides to have a prophylactic mastectomy.
Decades later, Stark will face a similar decision, although with a few additional but not ideal options. Having tested positive for the BRCA mutation, she could either submit herself to repeated breast exams, mammograms, MRIs, and follow-up tests to investigate any findings, no matter how benign they might ultimately be; she could remove her breasts and possibly her ovaries; or she could undergo chemoprevention, which would cause temporary menopause and lessen her risk of cancer—at least for a while. Stark, an otherwise healthy young woman and newlywed with her first book contract, opts for a mastectomy and breast reconstruction.
As the book's subtitle suggests, Stark places her personal story in an historical and scientific context, exploring the history of breast cancer and the serpentine, sometimes downright strange, journey that has led to modern treatments. The first allusion to breast cancer is found in the ancient Smith Papyrus, written in the seventeenth-century BCE, which includes case forty-five, “swellings on the breast, large, spreading, and hard; touching them is like touching a ball of wrappings, or they may be compared to the unripe hemat fruit, which is cool and hard to the touch.” The cure? “There is none.” Stark also writes about Myriad Genetics’ controversial decision to patent the BRCA gene, and the media hype around Angelina Jolie’s editorial in The New York Times about her prophylactic mastectomy and what the media referred to as the “Jolie Effect”—the supposition that women would rush out to get mastectomies because they were influenced by the actress. Then there are the issues that arise if a woman opts for reconstructive surgery after a mastectomy. This decision comes with a host of new questions: go larger or smaller? Maintain your original nipples or get Barbie-smooth breasts? Get a tissue flap—a procedure that involves using tissue from your abdomen or buttocks to build new breasts—or get synthetic implants?
Pandora’s DNA is a fascinating story that is well told, even if at times it’s a difficult read. Like most women the fear of breast cancer runs deep in me—despite the fact that I don’t have a family history, my best friend had it when she was 40 and each time I get a breast exam I hold my breath because really, it could happen to anyone. People who have the BRCA gene are at a higher risk, but none of us are completely immune. There’s a heart-wrenching moment (one among many) in Stark’s personal story that particularly moved me. She is at the hospital about to get her prophylactic mastectomy. She goes into the bathroom to take one last look at her breasts in the bathroom mirror. She chastises herself for not taking a picture of them and worries she will forget what they look and feel like.
But there are also bright spots in Stark’s story. The fact that this specter of cancer has hung over Stark all her life has made her more dogged in her pursuit of new experiences and wish fulfillment. She is in a loving marriage, she has an advanced degree from Columbia University Graduate School of Journalism, Pandora’s DNA is her second published book—and she’s only in her early 30s. When time is uncertain, we tend to make the most of it.
After finishing Pandora’s DNA I couldn’t help but think that with all the strides that have been made in breast cancer research and genetic testing, it strikes me as shocking and barbaric that in 2014 removing a woman’s breasts is still a recommended method to prevent or treat cancer. One hopes that future women will have better options.
March 20, 2018
I don't have any known high-risk BRACA mutations. But if I did, I would be faced with the same kinds of terrifying decisions as Stark had.
October 10, 2016
Lizzie Stark is a first generation BRCA patient who has taken advantage of the ability to undertake genetic testing for the hereditary BRCA mutations that put some families at significantly greater risk than others of breast and ovarian cancer diagnosis. Pandora's DNA covers her family's medical history and her admittedly privileged personal decision-making process which nevertheless involves loss and trade-offs. It also addresses how much, and in some respects how little, has been achieved in the field of women's health, and highlights some notable individuals and events in history that have advanced technology to where it is today.
November 2, 2014
Originally posted at: A Girl that Likes Books
I asked and received this book through NetGalley for free. This review is not sponsored nor influenced in anyway. The book is expected to published on October 15.
First impressions
I wanted to read this book mostly because a couple of years ago my aunt was diagnosed with breast cancer and so I wanted to have more information about. This book reminded me of what I was expecting to get when I read The Immortal Life of Henrietta Lacks, except that in this case it would be tinged with personal experience.
Final thoughts
It can be difficult to let other people help you, to let the people who love you see you weak and in need of support
When I read nonfiction it is very important for me to have my expectations clear. In this case I was expecting a self perspective of what it means to carry a gene that increases your chances of developing breast cancer, with a bit of info about the research on the subject. And I am happy because that is what I get.
This is not a book just about the history of cancer, not even breast cancer, it is the story of Lizzie Stark and how a mutation affected her whole life and her whole family. Often people will think that this type of malady only affects the women in the family, and while most of time it will only be the women who develop a tumor, this doesn't mean that it doesn't take a toll on the men around them.
I found Stark's voice very touching and honest. She had no problem sharing the fact that she was scared, angry and how her decisions were affecting her personal life. She made wonder of all the things my aunt felt like she couldn't share in order to "protect" us and it made me see her in a whole different light. I her case, it was unrelated to a genetic mutation, but she also had to deal with treatments and the possibility of losing her breasts.
When a book like this manages to make you walk in the author's shoes I call that a success
I asked and received this book through NetGalley for free. This review is not sponsored nor influenced in anyway. The book is expected to published on October 15.
First impressions
I wanted to read this book mostly because a couple of years ago my aunt was diagnosed with breast cancer and so I wanted to have more information about. This book reminded me of what I was expecting to get when I read The Immortal Life of Henrietta Lacks, except that in this case it would be tinged with personal experience.
Final thoughts
It can be difficult to let other people help you, to let the people who love you see you weak and in need of support
When I read nonfiction it is very important for me to have my expectations clear. In this case I was expecting a self perspective of what it means to carry a gene that increases your chances of developing breast cancer, with a bit of info about the research on the subject. And I am happy because that is what I get.
This is not a book just about the history of cancer, not even breast cancer, it is the story of Lizzie Stark and how a mutation affected her whole life and her whole family. Often people will think that this type of malady only affects the women in the family, and while most of time it will only be the women who develop a tumor, this doesn't mean that it doesn't take a toll on the men around them.
I found Stark's voice very touching and honest. She had no problem sharing the fact that she was scared, angry and how her decisions were affecting her personal life. She made wonder of all the things my aunt felt like she couldn't share in order to "protect" us and it made me see her in a whole different light. I her case, it was unrelated to a genetic mutation, but she also had to deal with treatments and the possibility of losing her breasts.
When a book like this manages to make you walk in the author's shoes I call that a success
June 18, 2014
Having electively gotten rid of some misbehaving parts myself (and dealt with doctors who have smugly set ideas about what is "natural" and endurable), this cuts pretty close to the bone. Stark comes from a family devastated for four generations by breast and uterine cancer, later linked to the BRCA1 gene. She describes the scientific side of this, from brutal early cancer treatments to the work done by Mary Claire King, and the hard-fought right of women to be told real diagnoses and not be knocked out for a biopsy and not wake up having had a mastectomy they didn't authorize, as well as the legal case in which a lab attempted to patent the BRCA gene and the ramifications for medical ethics and research. The hard part is Stark's own story of going through testing, preventative screenings and eventually, deciding whether or not to preemptively undergo surgery, and how these decisions affected her family.
February 12, 2015
One woman’s face-off with her genetic fate
For a complete list of winners, please visit www.ala.org/rusa/awards
For a complete list of winners, please visit www.ala.org/rusa/awards
October 17, 2022
This book was a great read, I found it hard to put down. I loved the mix of personal family history and history of science—you come away with lots of interesting tidbits.
I enjoyed learning about Mary-Claire King, an admirable researcher who not only discovered the role of BRCA mutations in inherited cancer, along with other important discoveries, but also mixed her love for genetics with political activism beginning with her time at Berkeley and beyond (e.g. she developed genetic techniques for reuniting separated families in Argentina after the Dirty War). There is also especially interesting discussion surrounding the moral question of whether it makes sense to patent a gene (culminating in the Supreme Court case against Myriad Genetics who held a monopoly on BRCA testing): Would the test have existed if there was no financial incentive for a big company to invest huge resources into cracking the problem? Is is ethical to block patients from getting a second opinion, or to set testing costs at a premium due to monopoly? The history of developments in breast cancer treatment through history, with many innovations linked to the battlefield, is also very interesting (there is some overlap here with the book by Mukherjee but it was good to get a refresh).
Stark describes well the “Pandora’s box” opened by such genetic testing. On the one hand, the advance of science allowing one to ascertain that they have a 70% or higher risk of breast cancer and a 30% or higher risk of ovarian cancer is a gift allowing one to take action. But at the same time the options left to you still seem barbaric: amputation of major organs. If you decide to have kids, do you choose IVF and screen out the BRCA mutated embryos? Is a BRCA mutation such a horrible thing that one should be selected out of existing in the first place?
I think this is an important book for anyone to read. But having a BRCA mutation myself, it struck a particular chord. I’m in the pre-surgery phase, so can’t speak to that part of the book, but can definitely relate to the weight of family history and the anxiety of constant screenings that come back with ambiguous results. I appreciate reading about the later parts of her journey before going through it myself. She does a really good job describing the feeling of loss of femininity, even as someone who was not very “girly” to begin with. As well as her battle to advocate for herself when faced with medical professionals who uniformly say that 30 is too young for a mammogram (not if you have a BRCA mutation) or condescending mansplaining surgeons who think they know best what their patients want (she eventually found a good one).
The author is also aware of her own privileges and comments on it. There are many additional issues that are skirted by being white, cis, middle class, well educated, etc. For instance African American BRCA carriers are more likely to get an ambiguous result when testing. And there is not good information available for supporting trans BRCA carriers.
I enjoyed learning about Mary-Claire King, an admirable researcher who not only discovered the role of BRCA mutations in inherited cancer, along with other important discoveries, but also mixed her love for genetics with political activism beginning with her time at Berkeley and beyond (e.g. she developed genetic techniques for reuniting separated families in Argentina after the Dirty War). There is also especially interesting discussion surrounding the moral question of whether it makes sense to patent a gene (culminating in the Supreme Court case against Myriad Genetics who held a monopoly on BRCA testing): Would the test have existed if there was no financial incentive for a big company to invest huge resources into cracking the problem? Is is ethical to block patients from getting a second opinion, or to set testing costs at a premium due to monopoly? The history of developments in breast cancer treatment through history, with many innovations linked to the battlefield, is also very interesting (there is some overlap here with the book by Mukherjee but it was good to get a refresh).
Stark describes well the “Pandora’s box” opened by such genetic testing. On the one hand, the advance of science allowing one to ascertain that they have a 70% or higher risk of breast cancer and a 30% or higher risk of ovarian cancer is a gift allowing one to take action. But at the same time the options left to you still seem barbaric: amputation of major organs. If you decide to have kids, do you choose IVF and screen out the BRCA mutated embryos? Is a BRCA mutation such a horrible thing that one should be selected out of existing in the first place?
I think this is an important book for anyone to read. But having a BRCA mutation myself, it struck a particular chord. I’m in the pre-surgery phase, so can’t speak to that part of the book, but can definitely relate to the weight of family history and the anxiety of constant screenings that come back with ambiguous results. I appreciate reading about the later parts of her journey before going through it myself. She does a really good job describing the feeling of loss of femininity, even as someone who was not very “girly” to begin with. As well as her battle to advocate for herself when faced with medical professionals who uniformly say that 30 is too young for a mammogram (not if you have a BRCA mutation) or condescending mansplaining surgeons who think they know best what their patients want (she eventually found a good one).
The author is also aware of her own privileges and comments on it. There are many additional issues that are skirted by being white, cis, middle class, well educated, etc. For instance African American BRCA carriers are more likely to get an ambiguous result when testing. And there is not good information available for supporting trans BRCA carriers.
December 31, 2021
Lizzie Stark takes the reader through the history of breast cancer and her own journey as she finds out she has the BRAC1 gene mutation. As a 27-year-old with multiple women in her family who have had breast cancer, she gets tested and throws herself into finding out how she can make her diagnosis a (long) life sentence with the best outcome. Stark does extensive research and interviews family members, countless doctors and other women to become more informed. Clearly and personally written, Stark’s book is a good resource since it seems like we all know people with the BRAC1 mutation. I am curious what advances have been made since the book was published in 2014.
October 15, 2017
Interesting but not very exciting for me. Women have a lot to gain from testing for this mutation. The author has it and lays out the consequences clearly. A woman who tests positive for the mutation faces really tough choices. Probably not worth a man's time to read unless he has a loved one who tests positive.
May 16, 2023
This is a gorgeously rendered portrait of an inconceivable choice: funny, insightful, compellingly written, on an urgent issue facing all our of families, whether we know it yet or not. A must-read, particularly for those whose families struggle under the weight and history of genetically inherited cancers. Outstanding.
April 7, 2021
Really good book. One of the best and most readable medically accurate books that I’ve read. I really enjoyed it. Did not feel the author needed to apologize for privilege she had at the end but I thought overall an excellent read.
February 11, 2023
Excellent writing about a terrible topic. The author’s personal history interwoven with facts about the history, science, and decisions related to cancer made for a very interesting book.
September 3, 2015
When a journalist decides to record a difficult personal journey, the rest of us benefit in a multitude of ways. In Pandora's DNA: Tracing The Breast Cancer Genes Through History, Science And One Family Tree Lizzie Stark shares not only her personal story, but her journalist's search for all the facts and the backstory.
As she explores and explains the history of breast cancer and the evolution of its various treatments, Stark segues to stories of her grandmother's breast cancer experiences and those of her great aunts and their daughters. She relates the story of her mother's struggle with breast cancer and later radiation treatments for thyroid cancer. Small wonder that Stark thought she'd be dead in her early thirties.
Stark presents an in-depth review of the science and history of the search for specific disease-related genes in the human genome. She concentrates on the two genes most closely related to high probabilities for development of breast cancer and ovarian cancer, BRCA1 and BRCA2. It took nearly 20 years to hunt down the BRCA1 gene, the gene associated with the majority of inherited breast cancer cases. Because of technological advances during the intervening years it was possible to locate and clone BRCA2 just a year later.
Aside from the story of the search for the genes there is the story of the lab/corporation that held patents on those genes, the high price of genetic testing, questions about who owns or should own the genes and the procedures and who really benefits from that system. Even as a court case unfolded that eventually decided that human genetic material couldn't be patented, Stark showed the other side of the argument, describing the amount of time and money corporations sink into developing those procedures.
The cost of a genetic test for the breast cancer genes goes much deeper than any wallet, as Stark describes in her wrenching account. Not knowing is agony. Knowing, when the results are positive, is no relief.
As Angelina Jolie famously demonstrated, there is one option available that can ensure the least likelihood for carriers of breast cancer genes to develop the disease. Remove all breast tissue, healthy or not.
It is, however, an agonizing decision to make. To a young woman like Stark, who has not yet had children, it's not really about deciding "if," but is only about deciding "when." Unfortunately, the sooner the better is the generally the best answer. The choice then becomes: have a child now, when the plan was to wait a few years; or forgo having a biological child who may inherit the genes. A devoted and supportive husband and family was no small consideration in Stark's decision-making process. But the family history was certainly a galvanizing influence.
In the story of her search for the right surgical team, Stark included some of the interesting history of plastic surgery and a detailed description of the procedure she would undergo. She also didn't skimp on the emotional impact it had on her or on other women she spoke to who had experienced the same procedure.
This well researched and written personal story is informative and inspirational. It should be required reading for young women on the fence about mammography and breast exams. Just do it.
by Judy King
for Story Circle Book Reviews
reviewing books by, for, and about women
As she explores and explains the history of breast cancer and the evolution of its various treatments, Stark segues to stories of her grandmother's breast cancer experiences and those of her great aunts and their daughters. She relates the story of her mother's struggle with breast cancer and later radiation treatments for thyroid cancer. Small wonder that Stark thought she'd be dead in her early thirties.
Stark presents an in-depth review of the science and history of the search for specific disease-related genes in the human genome. She concentrates on the two genes most closely related to high probabilities for development of breast cancer and ovarian cancer, BRCA1 and BRCA2. It took nearly 20 years to hunt down the BRCA1 gene, the gene associated with the majority of inherited breast cancer cases. Because of technological advances during the intervening years it was possible to locate and clone BRCA2 just a year later.
Aside from the story of the search for the genes there is the story of the lab/corporation that held patents on those genes, the high price of genetic testing, questions about who owns or should own the genes and the procedures and who really benefits from that system. Even as a court case unfolded that eventually decided that human genetic material couldn't be patented, Stark showed the other side of the argument, describing the amount of time and money corporations sink into developing those procedures.
The cost of a genetic test for the breast cancer genes goes much deeper than any wallet, as Stark describes in her wrenching account. Not knowing is agony. Knowing, when the results are positive, is no relief.
As Angelina Jolie famously demonstrated, there is one option available that can ensure the least likelihood for carriers of breast cancer genes to develop the disease. Remove all breast tissue, healthy or not.
It is, however, an agonizing decision to make. To a young woman like Stark, who has not yet had children, it's not really about deciding "if," but is only about deciding "when." Unfortunately, the sooner the better is the generally the best answer. The choice then becomes: have a child now, when the plan was to wait a few years; or forgo having a biological child who may inherit the genes. A devoted and supportive husband and family was no small consideration in Stark's decision-making process. But the family history was certainly a galvanizing influence.
In the story of her search for the right surgical team, Stark included some of the interesting history of plastic surgery and a detailed description of the procedure she would undergo. She also didn't skimp on the emotional impact it had on her or on other women she spoke to who had experienced the same procedure.
This well researched and written personal story is informative and inspirational. It should be required reading for young women on the fence about mammography and breast exams. Just do it.
by Judy King
for Story Circle Book Reviews
reviewing books by, for, and about women
August 22, 2015
I met the author of this book at a reading at my local bookstore, Politics & Prose, which might have some bearing on my review. As does my genetic status.
I am a BRCA1 gene mutation carrier, just like the author (Lizzie). And many women (and men) are survivors of breast cancer or were killed by breast cancer, just like the author's family.
The book is written as a combination of the history of cancer science and research, the history of her own family and the author's personal experiences with her mother's breast cancer and finding out that she was a BRCA1 carrier. I found the history fascinating (and now want to read The Emperor of All Maladies even more, despite already seeing the excellent PBS miniseries, which I recommend). I also related to the overriding history of seemingly everyone in your family being struck with breast cancer.
What I didn't relate to as much was Lizzie's experience with her BRCA1 diagnosis. Maybe I'm a cockeyed optimist, but I don't live in fear of a cancer diagnosis every moment. The author and I are very similar -- we are even around the same age, which I think is extremely valuable, since there are not a lot of childless people in their 30s writing about their BRCA experiences. But I just don't find the monitoring to be as onerous as the author. But to each her own, and I did really learn from her experiences.
As she writes, we have come a long way in cancer treatment and diagnosis and I am hopeful there will be even more to learn in the coming years. Maybe I am making the wrong decision by not getting a preventative mastectomy, but I am confident that the more I learn and read, the more informed decision I will make and the more educated I will be on the subject. I folded down quite a few pages of the book to revisit and research more and Lizzie's experiences give me a lot to think about and consider.
Thanks for writing this book, Lizzie! Glad to have someone like you in my corner.
I am a BRCA1 gene mutation carrier, just like the author (Lizzie). And many women (and men) are survivors of breast cancer or were killed by breast cancer, just like the author's family.
The book is written as a combination of the history of cancer science and research, the history of her own family and the author's personal experiences with her mother's breast cancer and finding out that she was a BRCA1 carrier. I found the history fascinating (and now want to read The Emperor of All Maladies even more, despite already seeing the excellent PBS miniseries, which I recommend). I also related to the overriding history of seemingly everyone in your family being struck with breast cancer.
What I didn't relate to as much was Lizzie's experience with her BRCA1 diagnosis. Maybe I'm a cockeyed optimist, but I don't live in fear of a cancer diagnosis every moment. The author and I are very similar -- we are even around the same age, which I think is extremely valuable, since there are not a lot of childless people in their 30s writing about their BRCA experiences. But I just don't find the monitoring to be as onerous as the author. But to each her own, and I did really learn from her experiences.
As she writes, we have come a long way in cancer treatment and diagnosis and I am hopeful there will be even more to learn in the coming years. Maybe I am making the wrong decision by not getting a preventative mastectomy, but I am confident that the more I learn and read, the more informed decision I will make and the more educated I will be on the subject. I folded down quite a few pages of the book to revisit and research more and Lizzie's experiences give me a lot to think about and consider.
Thanks for writing this book, Lizzie! Glad to have someone like you in my corner.
October 22, 2015
A very good discussion of breast cancer, especially breast cancer in families with an inherited gene which confers a high risk of early breast cancer, ovarian cancer, and even male breast cancer. The author is from such a family, and she tells the story of the family history as it moves through the generations. She grows up as scientists are discovering several of the genes responsible for these cancers. I very much enjoyed reading the history of the race to find the BRCA1 and BRCA 2 genes. How she weaves the history of early attempts at treatment of breast cancer, and the uncertainties women are faced with even today, with changing recommendations regarding mammograms, treatment of DCIS, or Stage 0 breast cancer, radical mastectomies versus simple mastectomies, versus lumpectomies. Her own personal wrenching decision making process regarding prophylactic mastectomies brings you into the world of agony family members with these genes face.
Interwoven is a limited history of medicine, but one revealing the arrogance frequently seen in those paternalistically treating those who suffer. There are heroes and quacks along the way.
Excellent read for those who wish to expand their knowledge of a sometimes deadly disease afflicting far too many women. I would especially recommend it for those who are from families with multiple breast and ovarian cancers, those considering being tested for the genes, and the people who love them.
Interwoven is a limited history of medicine, but one revealing the arrogance frequently seen in those paternalistically treating those who suffer. There are heroes and quacks along the way.
Excellent read for those who wish to expand their knowledge of a sometimes deadly disease afflicting far too many women. I would especially recommend it for those who are from families with multiple breast and ovarian cancers, those considering being tested for the genes, and the people who love them.
November 24, 2014
Pandora's DNA is both an incredibly personal story and a medical history. Stark opens with the "family curse"--her mother's side of the family's battle against breast cancer. As she recounts generations of her family succumbing to this devastating disease, Stark also chronicles the advances in medical screening and surgery, from the draconian Halsted mastectomies to contemporary one-step mastectomy and reconstruction.
Though reading about these procedures and the traumatic effects is daunting, Stark's narration is deft and even-handed. She renders complicated genetics and lawsuits understandable to those of us lucky enough to be unfamiliar with the disease and the mutation of the BRCA gene, a mutation Stark learns she's inherited from her mother, who herself battled breast cancer when Stark was only an infant. She is forced to make a harrowing choice--live in constant fear in the shadow of breast cancer with regular invasive screenings, or suffer a double mastectomy, cutting off her healthy breasts in order to stave off the risk of early death. She chooses the latter, and leads us through each step of the way with grace and humor and honesty.
This book is informative, poignant, and telling--a must-read for any woman who's struggled or wondered about the specter of breast cancer.
Though reading about these procedures and the traumatic effects is daunting, Stark's narration is deft and even-handed. She renders complicated genetics and lawsuits understandable to those of us lucky enough to be unfamiliar with the disease and the mutation of the BRCA gene, a mutation Stark learns she's inherited from her mother, who herself battled breast cancer when Stark was only an infant. She is forced to make a harrowing choice--live in constant fear in the shadow of breast cancer with regular invasive screenings, or suffer a double mastectomy, cutting off her healthy breasts in order to stave off the risk of early death. She chooses the latter, and leads us through each step of the way with grace and humor and honesty.
This book is informative, poignant, and telling--a must-read for any woman who's struggled or wondered about the specter of breast cancer.
October 22, 2014
*I received this book for free. I am not being compensated in any way for this review. All opinions expressed here are my own.*
There’s so much that the average person doesn’t know about breast cancer. I received a copy of this book just days after taking my own BRCA test, a test I didn’t know existed until my doctor told me that my family history of breast cancer could be linked to specific gene mutations.
The women in Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Sciences, and One Family Tree face a difficult choice: remove their breasts, or battle the cancer that had taken the lives of so many of their female relatives? Stark explores this dilemma in both her own experience and in her family’s history in an attempt to uncover what it means to have a BRCA mutation. Pandora’s DNA does a great job at balancing memoir and science in order to educate us more about a disease that people don’t seem to know very much about, despite the numbers of people it claims each year.
While some parts of the book might come across as overly-dramatic in places, you have to admire Stark’s honesty and her ability to make readers empathize. I recommend this to anyone who’d like a more in-depth look at breast cancer and the role it plays in some families.
There’s so much that the average person doesn’t know about breast cancer. I received a copy of this book just days after taking my own BRCA test, a test I didn’t know existed until my doctor told me that my family history of breast cancer could be linked to specific gene mutations.
The women in Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Sciences, and One Family Tree face a difficult choice: remove their breasts, or battle the cancer that had taken the lives of so many of their female relatives? Stark explores this dilemma in both her own experience and in her family’s history in an attempt to uncover what it means to have a BRCA mutation. Pandora’s DNA does a great job at balancing memoir and science in order to educate us more about a disease that people don’t seem to know very much about, despite the numbers of people it claims each year.
While some parts of the book might come across as overly-dramatic in places, you have to admire Stark’s honesty and her ability to make readers empathize. I recommend this to anyone who’d like a more in-depth look at breast cancer and the role it plays in some families.
December 14, 2014
This is an engaging and poignant story of a young woman who has inherited the BRCA1 gene, a gene that often results in the development of breast cancer.
Knowing that her grandmother, mother and aunts were all victim of this cancer,Lizzie Stark, the author, struggles with the decision to have herself tested. Eventually she does so, with grim results.
She begins to see herself in a different light- afflicted, possibly consigned to an early death. She grapples with the thought of having a double mastectomy to prevent this fate, and eventually comes to the conclusion that she must do so.
The story is profoundly personal, but it is much more than that. She describes the genes (BRCA 1 and 2) their discovery, transmission and other factors in the development of cancer. She looks back on the times when her forbears suffered through difficult, mutilating surgeries and debilitating chemotherapy. She Discusses the history of the treatments and those responsible for them and the evolution of newer and better therapies as well as detection.
This is a very well researched and objective study, beautifully combined with a personal and very subjective narrative.
Very highly recommended!
Knowing that her grandmother, mother and aunts were all victim of this cancer,Lizzie Stark, the author, struggles with the decision to have herself tested. Eventually she does so, with grim results.
She begins to see herself in a different light- afflicted, possibly consigned to an early death. She grapples with the thought of having a double mastectomy to prevent this fate, and eventually comes to the conclusion that she must do so.
The story is profoundly personal, but it is much more than that. She describes the genes (BRCA 1 and 2) their discovery, transmission and other factors in the development of cancer. She looks back on the times when her forbears suffered through difficult, mutilating surgeries and debilitating chemotherapy. She Discusses the history of the treatments and those responsible for them and the evolution of newer and better therapies as well as detection.
This is a very well researched and objective study, beautifully combined with a personal and very subjective narrative.
Very highly recommended!
May 6, 2015
Stark's story loosely follows my own "adventure" through the world of BRCA1 mutations and prophylactic surgery. Her style is accessible--like you are talking to your girlfriend about your BRCA mutation, what it means for you and your family, what you have chosen to do surgically, what that means for you/your husband/your parents/etc. I struggle with how to speak to my sisters about my decisions, as they are younger than me, and wished that Stark had had siblings, bc I would have liked to have seen how she addressed that. She works her way well through the complicated issues of gene testing, gene patenting, and a medical system that is oftentimes ill prepared to deal with someone that doesn't fit neatly in the "cancer" box. I thought she made an excellent point about the next generation of BRCA mutation carriers; will our daughters struggle even more with preventative measures that seem "extreme" and barbaric, since they will (hopefully) not witness in their mothers the devastating affects of breast and ovarian cancer? I am sure I feel much the way my grandmother probably did, or my husband's mother, when they died at 42 of ovarian cancer: things will be different for our children.
February 12, 2016
I decided to read this book because I am very interested in DNA. I have previously read the Seven Daughters of Eve and some other books about contemporary DNA research. This book is fairly short, about 278 pages, published in 2014. The author details her personal experiences as a carrier of a gene that increases the risk for breast cancer and her decision to undergo a mastectomy as a preventive measure. She discusses her family's cancer history, the scientific DNA background concerning the type of breast cancer gene she has, and the medical procedure she underwent to get a mastectomy. She is a good writer and it is fairly easy to read. I did think that she spent a little more time than she needed describing her emotional struggle about getting a mastectomy. She could have edited out some of that. Also she is a feminist and gives much of the credit for today's openness about breast cancer to the feminist movement, some of which I'm not sure is completely accurate. However on the whole it is an interesting book, though I don't think it is quite as good as the Seven Daughters of Eve. An interesting addition to DNA literature.
December 20, 2016
I liked the book, though it definitely resonated with me for personal reasons. I'm BRCA1+, and have lost my mother (when I was four), grandmother (when my mother was two), and cousin (last year when she was 50) to breast cancer. My grandfather and uncle died of cancer. My uncle died in his thirties from cancer, and my brother had cancer 18 months ago, at age 47. So yes, it's personal for me, and I'm not sure someone without BRCA in their family would find it as absorbing. Maybe yes though -- I liked the Henrietta Lacks book.
I found myself nodding during several points in the book, and the author definitely captured some of the collective family fear, feeling of inevitability of getting cancer, and relief that there is something (no matter how awful) that can be done to prevent it.
I found myself nodding during several points in the book, and the author definitely captured some of the collective family fear, feeling of inevitability of getting cancer, and relief that there is something (no matter how awful) that can be done to prevent it.
January 30, 2015
Yes, yes, yes. This book was such a beautiful blend of historical anecdotes relating to breast cancer and treatments, medical information written in an extremely readable way, and personal memoir/reflections from a young woman whose family is rife with the BRCA 1 gene mutations. I found Stark's writing style engaging and the perfect blend of wry humor (but not in a trying-too-hard sort of way) and heart-wrenching vulnerability and honesty. Reading this was like sitting down for coffee with an old friend. Thank you, Lizzie, for taking the time to write this eye-opening read. Above all, kudos to you for your immense courage and bright spirit.
September 5, 2016
As a breast cancer survivor, this book hit home to a lot of aspects of the disease. I started this book when I was first diagnosed, but have only been able to finish it since I have recovered from chemotherapy and a left mastectomy. Ms. Stark does an excellent job in relating how all avenues of breast cancer can affect one family. Family history, science, and personal issues are presented very well in the chapters. I am BRCA 1 and 2 negative, zero family history and my mammograms have always been clear. With all the research and science break throughs this disease has no mercy. Thank you, Ms. Stark for sharing your story with us. #prayforacure
November 20, 2014
Well-researched, moving book about one lady's family history of BRCA and her own decision to have a preventative mastectomy at a young age. This particular lady is a talented journalist and writer, so she puts her own story in historical context with plenty of fascinating info about cultural perceptions of breast cancer, plastic surgery and women's health.
Useful for anybody dealing with their own BRCA situation or anybody interested in really good health and science writing with a friendly, hip tone.
Useful for anybody dealing with their own BRCA situation or anybody interested in really good health and science writing with a friendly, hip tone.
October 20, 2015
In her mid twenties ms Stark finds she carries the BRCA gene that gives its carrier a very high chance of developing breast cancer, breast and ovarian cancer are common in her family and she has watched relatives suffer and dies from the cancers. As a result she decides on a double mastectomy and the book covers her emotions, historical means of cancer surgery and current science on the subject. The book is sometimes difficult to read and Ms Starks life is sometimes difficult to live. But it definitely covers its subject thoroughly.
March 31, 2015
Lots of interesting historical details about the history of breast cancer and treatments. I liked that the author gave her findings alongside her own story; it made the book much less dry than it could have been and I found that the author and I have had similar feelings about our bodies at some points. Some chapters are not for the faint of heart but anyone who enjoyed The Immortal Life of Henrietta Lacks or Birth will also enjoy this.
June 14, 2015
I am not BRCA positive but I am confident that if I was I would have made very similar decisions to the author, based on the best information at the time. That is how we have to make medical decisions; best information at the time. Her journey was painful, difficult and very relatable as was her family's. And she is honest about the emotional toil she also sees how she was fortunate with having choices as difficult as they were. Well written, well researched and also very human.
January 17, 2016
Pandora's DNA is an exemplary work of Journalism, clearly highlighting Stark's skill as a researcher, thinker, and writer. What is so consistently impressive about Stark's work is her ability to contextualize and humanize the vast amounts of data she incorporates into a compelling narrative.
December 25, 2014
The author interweaves her story, her family's story with the science and history of breast cancer treatment. An excellent book
May 26, 2015
After loving a course in cell biology, I found this book fascinating. I loved all the information the author provided.
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