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The Thyroid Cancer Book
Second Edition

by M. Sara Rosenthal, Ph.D.; co-published with Your Health Press

184 pages; quality trade paperback (softcover); catalogue #02-0771; ISBN 1-55395-059-3; US$24.95, C$28.95, EUR20.50, £14.50

Now in its second edition, the only consumer book on thyroid cancer in plain language, also contains a Low Iodine Cookbook.

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about the book      about the author      Table of Contents and Introduction      catalogue info

About the Book M. Sara Rosenthal, Ph.D., bestselling author of The Thyroid Sourcebook (recommended by The New York Times), The Thyroid Sourcebook for Women and The Hypothyroid Sourcebook has just published The Thyroid Cancer Book, the only consumer book to date devoted to thyroid cancer. A thyroid cancer survivor herself, Rosenthal wrote the book she wishes she'd had when diagnosed in 1983. The Thyroid Cancer Book explains all forms of thyroid cancer and its treatment in plain language. It was written in consultation with the leading medical experts on thyroid cancer in North America, and is the only book of its kind in the world. It includes extensive information on: Significant risk factors for developing the disease, and how to find and investigate lumps in the neck Papillary and follicular thyroid cancers, as well as the less common medullary and anaplastic cancers Treatment options, surgery and radioactive iodine Post-treatment follow up, whole body scans and Thyrogen Self-healing and complementary therapies The emotional impact of cancer on families and loved ones Palliative care While thyroid cancer accounts for roughly two percent of all cancers, it's among the fastest growing cancers in incidence. Its causes in North America are associated with fallout from nuclear testing in the American midwest, and environmental causes which Rosenthal also writes about in detail. Recommended by Johns Hopkins Thyroid Tumor Center, The Thyroid Foundation of America, The American Foundation for Thyroid Patients, The Thyroid Foundation of Canada, CancerHelpUK, and thyroid cancer patients from both Thyca and Thry'Vors. What thyroid cancer survivors are saying about The Thyroid Cancer Book: "Once again, Rosenthal has written a thoughtful, comprehensive, well researched, highly readable book, which will greatly benefit both newly diagnosed patients and veteran thyroid cancer survivors." Hal Crane, attorney and member of ThyCa (Morganville, New Jersey). "An excellent, easy-to-read introduction to the complexities of thyroid cancer for the layperson, addressing not only the medical issues, but the emotional and social impact of the disease on patients, their friends and families." Dianne Dodd, author and member of Thry'Vors (Ottawa, Ontario). "If I could, I would put this book in the hands of every thyroid cancer patient! Rosenthal provides the information patients need to make decisions about their care, and the reassurance that they are not alone." Megan Stendebach, writer of a collection of lighthearted thyroid cancer songs and member of ThyCa (San Antonio, Texas, www.thyroidcancersongs.com).

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About the Author

Dr. M. Sara Rosenthal completed her Ph.D. in sociology and bioethics at the University of Toronto Joint Centre for Bioethics and is the author of more than 25 widely recommended health books. She is currently an assistant professor of bioethics in the Department of Behavioral Science, University of Kentucky College of Medicine. For more information, visit www.sarahealth.com.

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Introduction and Table of Contents

CONTENTS

Introduction

Chapter 1:	Who Gets Thyroid Cancer? The Fallout Story The X-Ray Story The Gene Story Signs of Thyroid Cancer The "Good Cancer" Can You Prevent Thyroid Cancer?
Chapter 2:	Finding (or Looking for) Lumps Thyroid Self-Exam Investigating a Thyroid Lump Types of Lumps
Chapter 3:	All about Papillary and Follicular Papillary Thyroid Cancer Follicular Thyroid Cancer Staging and Spreading Dealing With Diagnosis Your Treatment Options Informed Consent and Thyroid Cancer What to Expect after Surgery Songs about Hypo Symptoms
Chapter 4:	Medullary Thyroid Cancer Signs of Medullary Thyroid Cancer The General Medullary Picture Types of Medullary Thyroid Cancer Staging and Spreading Treatment Options Genetic Screening for Family Members Calcitonin Screening for Recurrence
Chapter 5:	Anaplastic Thyroid Cancer What Is Metastatic Disease Palliative Care Pain Management Issues Surrounding End-of-Life
Chapter 6:	Radioactive What? What Is It? The "Hot" Topic What Are the Side Effects? Getting Clearance
Chapter 7:	Follow-Up Scans, Treatments, and Blood Tests Preparing for Whole Body Scans (WBS) Low Iodine Diet (LID) RAI Treatment Decisions External Radiation Thyroid Hormone Suppression Therapy Thyroglobulin Testing Treating Recurrence
Chapter 8:	Emotional, Psychological, and Spiritual Issues The Passion of Cancer Feeling Connected Coping with Depression Anxiety and Panic Coping with Fatigue Cancer and Life Partners Health Insurance
Chapter 9:	Self-Healing and Complementary Therapies Boosting Your Immune System Discover Your Life Force Energy Pressure Point Therapies Aromatherapy Qi Gong Feng Shui Meditation Calm Your Nerves Counseling

Resources

Bibliography

Index

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INTRODUCTION

Many of you reading this book already know parts of my story, which I have revealed in past works on thyroid disease, such as The Thyroid Sourcebook, first published in 1993 (now in its fourth edition). I was diagnosed with thyroid cancer in 1983, at the age of 20. (Okay-now you know my age!) All I heard was "cancer;" I had no idea what a thyroid gland was. The product of a broken home, a bitter custody battle and a "deadbeat Dad" who refused to pay child support despite ample means, I was living with my mother, who was trying to make ends meet on a secretary's salary. We hovered above the poverty line in 1983; I was in second year university and planned to apply to law school (even though I was really a writer). My dream at that time was to go into family law so I could represent children who, like myself, were torn apart in custody battles. I never wrote my L-SAT. Instead, I got thyroid cancer and my whole world changed. But the goal of turning my "lemons" into lemonade was still met - just in an entirely different way than I planned.

Had I lived in the United States, my mother would not have had the money to pay for the medical treatment I needed, and probably would not have had adequate insurance coverage. In Canada, I was covered under my provincial health care. At the time my cancer was diagnosed, it had spread throughout my neck, and was in a secondary stage. I had a total thyroidectomy (removal of the thyroid gland) and neck dissection (removal of cancerous lymph nodes), followed by a 100 millicurie dose of radioactive iodine-the maximum allowable dose in my hospital at that time. Depressed and hypothyroid, I dragged around my university campus, and prepared for various scans. The last part of my treatment entailed taking the bus everyday for a month to the bowels of the hospital for my external radiation therapy treatments, which made me sicker than any of the previous treatments. As I sit here pushing 40, I'm amazed I went through this experience with almost no information about what cancer was or what a thyroid gland was. When the fourth year medical student on duty during my thyroid surgery asked me out on a date (after I had gone home), I accepted because I saw it as an opportunity to get some information. In essence, I dated my way to thyroid cancer information because it was the only way I could get it. In fact, I suffered more from a lack of information about thyroid cancer than from the actual cancer itself. This is the book I wish I had when I was first diagnosed, and it is also the book I need now, as a long-time survivor of thyroid cancer.

What I thought at the time was a lot of information about my cancer from my head and neck surgeon would sound today like See Spot Run. Now, having completed my doctorate in bioethics (also called medical ethics), I can't believe what I wasn't told. And I have spoken in public about the inept handling of my biopsy procedure, an older procedure not done anymore in which the initial "lump" was removed in its entirety. (I wasn't given any pain medication, nor was I given enough local anesthetic, and told that it was such a "simple" procedure that there was no need to bring anyone to the hospital with me.) When I cried in pain, the tanned plastic surgeon biopsying the lump actually yelled at me, yet he was not at all the appropriate person to do the procedure. (I was referred to him by my family doctor when I insisted on having the lump removed - something my family doctor didn't think was necessary.) Incredibly, when the lump was found to be cancerous, no one told me about it. Instead, my doctor called my mother and told her about my cancer. And so it was she who told me the news, in the absence of any physician. She could barely explain it to me properly, and for the first several minutes of that discussion, I thought it was she who had cancer. From both the lay and academic perspectives, this was an outrageous way for a doctor - even in 1983 - to handle the cancer diagnosis of a 20-year-old woman.

I have seen thyroid cancer go from an unheard-of cancer that barely received a paragraph of note in most cancer books or materials put out by cancer organizations to a commonly diagnosed cancer inspiring large support networks, including the recently formed Thyroid Cancer Survivor's Association (www.thyca.org) and Thry'vors (http://groups.yahoo.com/ group/Thryvors/join), a Canadian organization of thyroid cancer survivors. When I wrote the first non-technical consumer book on thyroid disease, The Thyroid Sourcebook, I never imagined that there would be enough of an audience to warrant a separate book on thyroid cancer. For many years, the chapter I included in The Thyroid Sourcebook on thyroid cancer was the only accessible information that thyroid cancer patients could turn to. I became convinced in the later 1990s that a separate thyroid cancer book ought to be written, but no one would publish it because thyroid cancer remained a "rare" cancer. Essentially, that means no mainstream publisher could justify spending the money on a book geared towards what's still considered a small market. In 2000, when I launched my health promotion company and website (sarahealth.com), I had a vision of creating a health publishing company that would service the needs of people suffering from rare or stigmatizing health problems- health problems about which little or nothing is written. What followed was the birth of a series of books by Your Health Press™, which are dedicated to orphan diseases such as thyroid cancer, as well as controversial or stigmatizing health issues. As of this writing, this is the first thyroid cancer book written for the consumer by a thyroid cancer survivor. It's designed as a complete and comprehensive resource for thyroid cancer survivors. But before you move on to other chapters, there are two things you need to know before you can put it all together. You need to understand what a thyroid gland does in the body, and you need to understand what cancer does in the body.

What Is a Thyroid Gland?

Many of you reading this book probably have other general books on thyroid disease, which may include past books of mine, such as The Thyroid Sourcebook. However, to save you some time, the following is a brief primer on what the thyroid gland does all day in your body.

The "thyroid" was named in the 1600s. The word itself is Greek for "shield," because of its butterfly shape. Your thyroid gland is located in the lower part of your neck, in front of your windpipe, and it produces two thyroid hormones: thyroxine, known as T4 (four iodine atoms), and triiodothyronine, known as T3 (three iodine atoms). Thyroid hormone (the two hormones are referred to in the singular; the word "hormone" is Greek for "stimulator") is then secreted into the circulatory system and becomes widely distributed throughout the body. It's one of the basic regulators of the functions of every cell and every tissue within the body, and a steady supply is crucial for good health. In essence, your thyroid affects you from head to toe-including skin and hair!

If you were to break down exactly how much T4 and T3 is secreted by your thyroid, you'd find that 90 percent of the thyroid output is T4, and only 10 percent is T3. Although these hormones have the same effect in your body, T4 must be converted into T3 before it is able to affect the body. T4 turns into T3 by shedding an iodine atom, a process that is regulated differently by different body parts.

Iodine

Your thyroid gland extracts iodine from various foods, including certain vegetables, shell fish, milk products (cow udders are washed with large amounts of iodine, which wind up in your milk) and anything with iodized salt. Normally, we take in sufficient iodine through our diet. Our thyroids are very sensitive to iodine. When the thyroid gland isn't able to obtain sufficient quantities of iodine, it can enlarge and you develop what's called a goiter. It can also become over or underactive. (See The Thyroid Sourcebook for more on goiters, iodine deficiency, hyperthyroidism and hypothyroidism.

The Pituitary Gland

The pituitary gland (often referred to as the "master gland") is situated at the base of the skull and regularly monitors T4 and T3 "stock" in your body's blood levels. When stock is low, it sends a message to your thyroid gland-in the form of a stimulating hormone called TSH (thyroid stimulating hormone)-and orders it to produce more. The pituitary gland secretes increased amounts of TSH when T4 and/or T3 levels are low. That's why the TSH test is so telling: when your TSH level is high, it's a sign that you're hypothyroid; when it's low, it is a sign that you're hyperthyroid. As a thyroid cancer survivor, the TSH test will help you know whether your thyroid medication is adequate. This is discussed more in chapter 7.

The Role of Calcitonin

Your thyroid gland rents space to additional thyroid cells called C cells, which make the hormone calcitonin and do not make thyroid hormone. This hormone helps to regulate calcium, and hence helps to prevent osteoporosis. But to your bones, calcitonin is kind of like a tonsil; it serves a useful purpose, but when the hormone isn't manufactured, due to the absence of a thyroid gland (if it's removed or ablated by radioactive iodine), you won't really notice any effects, just as you don't miss your tonsils. Calcium levels are really controlled by the parathyroid glands, discussed further on. (Women need to be aware that the hormone estrogen also influences calcium levels, which is why after menopause, osteoporosis is such a concern. (See The Thyroid Sourcebook for Women for more on this.)

Calcitonin comes into play when screening for a rare type of thyroid cancer called medullary thyroid cancer, which is sometimes genetic in origin and which is discussed in detail in chapter 4.

The Role of Thyroglobulin

Although this sounds like a Halloween candy, thyroglobulin is a specific protein made only by your thyroid cells, used mostly by the thyroid gland itself to make and store thyroid hormone. Like calcitonin, this substance isn't all that important to your body once your thyroid is gone; you won't miss it. The only role thyroglobulin plays is in screening for thyroid cancer recurrence (normally, produced by thyroid cells and thyroid cancer cells it leaks into blood where it can be measured). This is discussed more in chapter 7.

What is Cancer?

Now that you know what the thyroid gland does, it's also useful to understand in more general terms, what "cancer" actually means. Cancer is the general term for the abnormal growth of cells. When the abnormal cell reproduces, it has the ability to invade or metastasize to other parts of the body. The actual word "cancer" is Latin for crab. It was, in fact, the crablike appearance of tumors that inspired the Roman physician Galen to actually name cancer. In Greek, "karkinos" originally meant "crab" too, which is how Hippocrates first identified and classified this illness 2,500 years ago.

Cancer was rarely noted in the ancient world, and is not mentioned at all in the Bible or the Yellow Emperor's Classic of Internal Medicine, the ancient medicine book of China. It began to be diagnosed more extensively around the time of the Industrial Revolution.

The cancer cell frequently destroys the organ from which it originates. As it spreads into various parts of the body, it interferes with the jobs of regular cells, confuses other organs, and can wreak havoc. It's basically a terrorist cell, hijacking surrounding organs and other cells. Cancer cells use the lymph system or blood vessels to get into the bloodstream and then travel throughout the body. These cells love organs that have multiple blood vessels and nutrients, such as bones, lungs, and brains- common areas where cancer spreads.

Cancer cells are classified into four main groups: carcinoma, sarcoma, leukemia and lymphoma. A carcinoma refers to cancerous cells coming from epithelial cells Ð cells that line various organs. You'll find carcinomas in organs that tend to secrete something (milk, mucus, digestive juices, and so on). Common sites for carcinomas are breasts, lungs, and colons. Carcinomas account for 80 to 90 percent of all human cancers, and are generally slow-growing. There is always a prefix attached to the word "carcinoma" that will tell us where the carcinoma is growing, and the kinds of cells that are involved. An adenocarcinoma, for example, is a carcinoma starting in glandular cells. When you just see the word "oma" by itself, it means tumor. An adenoma refers to a clump of benign glandular cells; a fibroma refers to a clump of benign fibrous cells, and so on. When the cells are malignant, the word carcinoma is attached to the end, as in adenocarcinoma. When it comes to thyroid tumors, benign tumors are more frequent than adenocarcinomas, which are malignant. It gets even more specific. You'll need to know where the adenocarcinoma itself originated. Think of it like this: carcinoma used by itself is as descriptive as saying "sweater." Adenocarcinoma is like saying "wool sweater." More specific descriptions can be "lambswool sweater" or "angora sweater." And there can be other prefixes that are synonymous with saying "blue angora sweater." There are literally hundreds of carcinomas, all described by a different combination of prefixes that identify the parts of the bodies involved, the shape of the carcinomas, etc.

Sarcomas are cancerous cells coming from supporting connective tissue. Sarcomas are rare and account for only two percent of all human cancers, but tend to be more aggressive than carcinomas. Again, the prefixes before the word tell you where the sarcoma is located, what it's made of, what shape it is, etc., while sometimes sarcomas are named after the doctors who discovered them. The difference between a carcinoma and a sarcoma is equal to the difference between a sweater and a boot; both are different things, but related. Nonetheless, both have different physical properties, are made of different materials, available in different colors, and so on.

Since cancer cells are living cells, it's in their nature to continue to live. So the first thing cancer cells do is grow; they grow at a faster rate than normal cells. They'll simply begin growing where they first originated, be it in the thyroid, lung, or colon. Then they mutate from the other cells that surround them. After they get to a certain age, they want to move out and leave their original nest. So they spread out into surrounding fat and tissue.

A very crucial need of the cancer cell is to eat. So the cancer cell sends out protein messengers (called tumor angiogenesis factors) that create new blood vessels to feed it. If a cancer cell can manage to grow, spread and eat, it will live, and we'll experience the result of this in the form of a tumor. If any of these functions is stopped, the cancer will die. As you've guessed by now, treatments will therefore attempt to interfere with these functions. These treatments aim to: stop the cells from growing; stop the cells from changing or mutating; stop the cells from spreading; or stop the cells from eating.

If the cancer continues to live, it will simply continue these same basic behaviors: it will grow bigger; change and mutate even more to trick the immune system; and spread out even more by bursting into surrounding structures and into the blood vessels. Finally, if the cells reach adulthood, they'll want to settle down and find a good home, preferably an organ rich in blood vessels, like liver, lungs, and bone. So the cells attach to these blood vessels, and pass through them into such an organ. And they'll continue to make themselves comfortable so that they can reproduce more and more. This means setting themselves up with a new blood supply to make the organ more conducive to their growth. And so it goes, until the cancer occupies many sites in the body. The most important thing to remember is that none of this happens immediately; it can take years for these cancer cells to really spread.

Differentiated vs. Undifferentiated

Cancer cells are classified into two behavioral categories: differentiated and undifferentiated. These terms refer to the degree of maturation of the cancer cells. Differentiated cancer cells resemble the more normal cells of their origin. A differentiated cancer cell that originates in the thyroid, for example, would look and act more like a normal thyroid cell. In fact, these differentiated cancer cells do not reproduce as rapidly as undifferentiated cells. Differentiated cancer cells look different under the microscope from undifferentiated cancer cells; they also have structural differences that allow doctors to tell the type of cancer cell, and therefore predict how rapidly the cell is growing, and the degree of malignancy. But both differentiated and undifferentiated cells are often treatable; key factors are tumor size and lymph node status. Often, you won't find a purely differentiated cell. It may look just moderately abnormal. Because of this, there are subclassifications: moderately differentiated, well differentiated, or poorly differentiated. These classifications are known as the cells' grading. A high grade means that the cell is immature, looks wilder or poorly differentiated and therefore faster growing; a low-grade cancer cell is mature, looks more normal or well-differentiated, slow-growing, and less aggressive. However, this is a terribly basic explanation of cell grading, something that has far more complex criteria.

Undifferentiated cancer is made up of very primitive cells that look wild and untamed, bearing little or no resemblance to the cells of origin. This is more dangerous because the cells may then spread faster. There are cases, though, when undifferentiated cancer isn't very aggressive, despite the fact that it involves more primitive cells. In these cases, the cancer looks wilder than it behaves. This is often the case in breast cancers.

There are also mixes of these different cells, which affect the aggressiveness of the disease. For example, there can be mostly differentiated cells mixed in with a few undifferentiated cells, or vice versa. Whatever is most aggressive will affect the behavior of the cancer; mostly differentiated cells will slow down whatever undifferentiated cells exist, while mostly undifferentiated cells will speed up whatever differentiated cells exist.

Some differentiated cancers may evolve or mutate into more aggressive, rapidly growing undifferentiated cancers. This happens either because the differentiated cancer cell mutates, or because the wilder cells within the tumor outgrow the more normal, differentiated cancer cells. This will then change the behavior of the tumor in later stages.

Okay - you're armed with the basics. Now you're ready to move on to the complex world of thyroid cancer.

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Catalogue Information

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