Gestational Trophoblastic Neoplasia: A Guide for Women Dealing with Tumors of the Placenta, such as Choriocarcinoma, Molar Pregnancy and Other Forms of GTN by Tara Johnson and Meredith Schwartz

Downloadable Press Release (1.45 MB)

Audio
Hear authors Tara Johnson and Meredith Schwartz discuss gestational trophoblastic neoplasia on the radio show Choriocarcinoma and GTN.
Download the MP3 (12.9 mb)

Here's what people are saying about Gestational Trophoblastic Neoplasia: A Guide for Women Dealing with Tumors of the Placenta such as Choriocarcinoma, Molar Pregnancy and Other Forms of GTN:

“This book will be a useful resource—both for women facing GTN, and healthcare practitioners.” — Susan C. Modesitt, MD

About the Book
"I was diagnosed with choriocarcinoma on February 7, 2002, when my daughter was almost nine months old. I was devastated to hear the words you have cancer of the
placenta. I sat there with this stupid grin on my face, holding back the tears.”

And so began Tara Johnson’s frightening journey into the world of a rare gynecological cancer. Choriocarcinoma is so rare—some 1 in 40,000 pregnancies—many oncologists have never treated it, much less come across information about it that’s suitable for patients. After being dismissed for nearly four months with postpartum bleeding, Tara was finally properly diagnosed and her treatment began. The story she tells in this book is touching and personal. It includes intimate details about her battle with cancer—and with a medical system that ignored her symptoms while that cancer spread.

The book is also a hands-on guide for patients dealing with the challenges and the life-threatening complications of gestational trophoblastic neoplasia, or GTN. GTN is an umbrella term used to describe a group of disorders of the placenta. Gestational Trophoblastic Neoplasia: A Guide for Women Dealing with Tumors of the Placenta, such as Choriocarcinoma, Molar Pregnancy and Other Forms of GTN explains the medical questions and issues of GTN—its tests, treatment and risk factors—as well as the complex social and emotional aspects of a cancer diagnosis. It also contains a resource list designed to connect patients to support groups near their homes and online.

Tara and Meredith are a unique team. While Tara became a choriocarcinoma expert through her own experience, diagnosis and treatment, Meredith is currently a doctoral student in the field of bioethics, and has researched extensively on medical issues. This book combines their skills, deftly weaving personal narrative with “harder” facts. The result is an incredibly compelling and informative read.

TABLE OF CONTENTS
Foreword
Introduction

Chapter 1: Understanding Gestational Trophoblastic Neoplasia
Gestational Trophoblastic Neoplasia
Normal Development
Development of GTN
Types of GTN
Risk Factors for GTN

Chapter 2: An In-Depth Look at Cancer and Choriocarcinoma
Cancer Basics
The Genetics of Cancer
The Genetics of Choriocarcinoma

Chapter 3: The Signs and Symptoms of GTN
Identifying the Signs and Symptoms of GTN
Signs and Symptoms Specific to GTN
Signs and Symptoms that May Indicate Metastatic GTN

Chapter 4: Diagnosing GTN
The Tests for All Forms of GTNs
Staging Systems for GTN
How to Deal with Doctors and Your Healthcare Team
Questions to Ask Your Doctor

Chapter 5: Treating GTN
Treatments by Type and Stage of GTN
Chemotherapy Resistance
Treatment Follow-Up
GTN Treatment Particulars
Surgery
Chemotherapy
Complementary and Alternative Therapies

Chapter 6: Coping with the Side Effects of Chemotherapy
GTN and Chemotherapy
The Physical Side Effects of Chemotherapy Treatments
Low Blood Counts
Fatigue
Pain
Digestive Problems
Mouth and Throat Problems
Skin Problems
Hair Loss
Temporary Menopause
Other Side Effects
The Emotional Side Effects of Chemotherapy Treatments
Anxiety
Stress
Depression
Nutrition and Chemotherapy

Chapter 7: Personal Relationships and Intimacy
How to Deal with Your Friends and Family
Husbands and Partners
For Your Husbands and Partners
Children
Extended Family
Friends
For Your Friends

Chapter 8: Common Fears About GTN Treatment
Loss of Fertility
Chemotherapy Resistance
GTN Recurrence
Long-Term Complications of Treatment
Death

Chapter 9: Recovery And Beyond
Delayed Reactions to the Diagnosis of GTN
Pregnancy After GTN Treatment
Life as a Survivor

Resource List
Glossary
Bibliography
Index

EXCERPT FROM THE INTRODUCTION OF THE BOOK
Gestational Trophoblastic Neoplasia: A Guide for Women Dealing with Tumors of the Placenta, such as Choriocarcinoma, Molar Pregnancy and Other Forms of GTN

When I found out that I was pregnant, my husband TJ and I scheduled our first visit with an OBGYN. That visit, and those that followed, convinced us that all was well. It was a “normal” pregnancy that culminated in the birth of my daughter, Tatum. I was ecstatic. Although I had a stepson, she was my first child. You could say I was willingly “born” into motherhood—and loving it.

Then things started to go wrong. I became tired all the time. No big deal, I thought, I had a newborn to look after: of course I was tired. I experienced the usual six weeks of postpartum bleeding—and then some. I was told (and had read) that this happens sometimes, and that I shouldn’t worry about it. So, I didn’t. I thought: that’s what you get after not having a period for nine months. I bled off and on, with cramps to go with it. Sometimes the cramps were just annoying and other times they were really painful. Before finally being diagnosed, I was admitted into emergency for hemorrhaging. The doctors did blood tests, and told me I had been pregnant again, and had probably miscarried. They kept me overnight and did an ultrasound, which came up clear with no fetus. The OBGYN let me go home the next day, informing me that it was either a miscarriage I experienced, or that a part of the placenta from the birth of my daughter had been left behind, and my body was trying to get rid of it. She gave me her card and told me that if I was still bleeding in two weeks I should call her office to make an appointment.

Two weeks later I was still bleeding. I called the doctor’s office and was told that I couldn’t get an appointment for a month and a half—and this was after I explained my situation to the receptionist. A month and a half later I was still bleeding. Finally I got in to see the doctor. She checked to see how much I was bleeding and told me to come back in two weeks if nothing had changed. After those two weeks passed I was again told that the next available appointment was in a month and a half. Of course I kept the appointment, and this time the doctor scheduled a D&C (dilation and cutterage) in yet another two weeks. All this waiting! It took a total of four months to get proper treatment! The doctor also gave me a prescription for the painful cramps I’d been having—to treat an infection “down there.”

I got the D&C done and was called back for bloodwork the next day. I could tell something was wrong. The doctor told me that an “abnormal amount of tissue” had been found. She repeated herself, emphasizing the words “a lot.” She told me that she’d requested the bloodwork to ensure she’d gotten all of the tissue. She had not. The next day the receptionist called to ask that I come in again. No problem, I said. Then she told me to make sure to bring my husband. My heart jumped. I thought: this is really bad.

I was diagnosed with choriocarcinoma on February 7, 2002, when my daughter was almost nine months old. I was devastated to hear the words “you have cancer of the placenta.” I sat there with this stupid grin on my face, holding back the tears. What a dreadful thing to hear—the words still ring in my ears to this day. I mean, cancer! Sure I had heard of it—lots—but I didn’t know anyone personally who had had it before. All I knew about cancer was that it killed many, many people each year. Yet there I was, faced with it, being lead blindfolded into it by a gynecologist who didn’t seem to know much more than I did. She said she’d never had a patient with this type of cancer before, and then she set up the necessary tests. My husband TJ and I went home.

TJ had to work that night, so I invited my friends Meredith and Danielle over for moral support. Meredith came armed with The Gynecological Sourcebook by Dr. M. Sara Rosenthal, which had a section on gynecological cancers. In it was a list of questions to ask your doctor. Together Danielle, Meredith and I tried to make the best of the situation, as well as learn something about this type of cancer. We laughed, we cried and, when we weren’t glued to the television to take our mind off things, we focused on cancer.

The next day I phoned my doctor’s office and explained that I had some questions. I got an appointment that afternoon. I think I scared my doctor with these questions and how prepared I was, because she got really nervous and began to blame the cancer on the doctor who’d delivered Tatum. We never will know exactly what caused the cancer, but I do know now that it could have been caught a lot sooner. My OBGYN even admitted being mad at herself for not catching the cancer sooner, and asked me how that could have happened. I told her about the four-month wait before the D&C, and she didn’t even apologize. This really made me mad because I felt I had entrusted her with my life. I know that we all make mistakes, but this was not something I felt could be shrugged off.

And yet that’s exactly what had happened.

About the Authors
Tara Johnson is a young wife and mother of two beautiful children. She is also a choriocarcinoma survivor. Tara and her loving husband TJ are raising their family in Saskatoon, Canada and planning the next step in their lives: careers.

Meredith Schwartz, MA is a doctoral fellow in the Canadian Institutes of Health Research (CIHR) Training Program in the Ethics of Health Research and Policy at Dalhousie University. She has been a recipient of the CIHR Douglas Kinsella Doctoral Award for Research in Bioethics and frequently writes about issues of social justice in healthcare ethics. View Meredith Schwartz's myspace site.