Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healingby Jeannie Burt
This fully updated second edition describes the latest scientific and
About 25 percent of breast cancer surgery patients experience lymphedema - a disfiguring, painful swelling, most frequently of the arm. In the past, doctors suggested that little could be done for this condition. But that has changed, and the guide to good help is right here, in your hands.
This fully updated second edition describes the latest scientific and medical advances in treatment and care and includes expanded nutrition and exercise sections. The book also emphasizes active self-help and explains in detail how a woman can prevent lymphedema, reduce lymphedema with, exercise and self-massage, reduce lymphedema through professional therapy, talk with her doctors, select and use Kinesio Taping and compression garments, eat right and manage daily life with lymphedema, find emotional support, locate resources for additional help.
Complete with more than 50 illustrations, Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing includes the encouraging stories of women who are successfully managing their lymphedema and have regained control over their lives.
"...this book’s strength lies not only in its content, but in the spirit of hope it engenders." — MAMM Magazine
" focused on patient education and empowerment while compiling a wide range of information and expertise an excellent resource to clinicians." — Physical Therapy (American Physical Therapy Association's official publication)
" incredibly well-written exactly the information patients want. The low cost makes this information accessible to many people and a real find." — Oncology Nursing Forum
- Turner Publishing Company
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Read an Excerpt
LymphedemaA BREAST CANCER PATIENT'S GUIDE to PREVENTION and HEALING
By Jeannie Burt Gwen White
Hunter House Inc., PublishersCopyright © 2005 Jeannie Burt and Gwen White
All right reserved.
Chapter Onethe BASICS about LYMPHEDEMA
The human lymphatic system is vast and extremely complex. In this chapter we discuss the basics about the lymphatic system and about lymphedema in terms that can be understood by almost everyone. Even with the focus on simplicity, however, the discussion is somewhat technical. Do not be discouraged if it doesn't make complete sense. In later chapters, you will see that understanding the lymphatic system in detail is not essential to successfully dealing with lymphedema. Skim these first few chapters if you like, and read them again later when you can take everything in.
What Is Lymphedema?
Lymphedema is swelling, usually in the arms or legs, that occurs as a result of an impaired lymphatic system (see Figure 1.1). A person's lymphatic system can be impaired in a variety of ways: by surgery, radiotherapy, injury, or even infection. The impairment can also occur simply as a result of the makeup of the person's genes.
The lymphatic system is part of both the immune system and the circulatory system.You will see in more detail in a later chapter that it is responsible for cleansing the body's tissues and maintaining its balance of fluids. Specifically, the vessels that make up the lymphatic system drain excess fluid from the body's cells, along with protein molecules, bacteria, viruses, cellular waste products, and other unusable matter. Once this protein-rich fluid called lymph has entered the lymphatic system, it is transported through the lymphatic vessels to the lymph nodes, where it is filtered and cleansed of the waste products and other materials it carried out of the cells. Eventually the lymph fluid rejoins the blood by flowing into the large veins just before they enter the heart. Unlike the blood circulatory system, which carries blood both toward the heart and away from it, the lymphatic system is a "one-way" system; that is, it carries its fluid away from the body's cells toward the heart.
If the lymphatic system has been impaired, the lymph fluid can back up. Swelling, or lymphedema, occurs when the amount of fluid in an area is greater than the capacity of the lymphatic system to transport it away. Lymphedema has also been defined as "an abnormal accumulation of tissue proteins, edema, and chronic inflammation within an extremity." If the condition is left untreated, the excess of protein-rich lymph fluid can provide a breeding ground for bacteria that can result in infection and can delay wound healing, because less oxygen gets to the tissue cells. A long-term accumulation of lymph fluid eventually causes tissues to thicken and harden (a condition called fibrosis), which creates further resistance to the draining of fluid from the limb.
If a person's lymph nodes are removed or radiated as a part of cancer treatment, she or he will be at risk of developing lymphedema for the rest of her or his life. Some breast cancer survivors-about half-will never get visible lymphedema at all. In others, the swelling starts immediately following surgery or radiotherapy. For others, it may not appear until many years later. Still others may endure an episode of lymphedema that lasts for a few weeks, disappears, and may or may not ever return.
Causes and Types of Lymphedema
Lymphedema can occur in anyone-man, woman, or child-from any of several different causes. It can occur anywhere in the body but is most common in the arms, legs, and breast tissue.
Some of the causes of lymphedema are
* surgery, particularly when lymph nodes are removed during treatment for cancer of the following types: breast, prostate, gynecological, head or neck, colon, melanoma, or sarcoma
* radiotherapy, which kills tumor cells but can also produce scar tissue, which in turn can interrupt the normal flow of the lymphatic system * trauma that disrupts an area of the body containing lymph nodes * infection, including lymphangitis (inflammation or infection of the lymph vessels themselves) * cancer, which itself can block lymph flow * filariasis, a disease found mostly in endemic areas of Southeast Asia, India, and Africa, and caused by parasitic worms called filaria that enter the lymphatic vessels that lie close to the body's surface * paralysis or immobility * chronic venous insufficiency (abnormally low return of blood from the legs to the trunk by way of the veins) * obesity
When lymphedema results from any of these causes it is known as secondary lymphedema. In each case, the chance of developing the condition can be increased by certain contributing factors. These can range from an extensive trauma to a small, inconsequential injury, such as the kind that results from a cat scratch, a bug bite, or everyday activities like gardening or household chores. Even a hot day or an airplane flight can sometimes trigger an episode. A lymphedema patient who came into Gwen's clinic had undergone bilateral mastectomies-the first in 1957, the second in 1964. She had experienced no swelling problems for thirty-three years; in fact, she had no idea she even had a chance of developing lymphedema. Then, during a hot summer day when she was packing and lifting boxes to prepare for a move, her arm suddenly started to swell. Although we'll never be sure, this woman might have been able to avoid developing lymphedema if she had spaced her heavy chores out over several days or done them during the coolest part of the day. Unfortunately, she had no way of knowing this. One of the goals of this book is to inform you about potential triggers of lymphedema and how to avoid them.
As mentioned above, not everyone who undergoes radiotherapy or the surgical removal of lymph nodes develops lymphedema. In many people the remaining lymphatics (lymph vessels) dilate or form collateral circulation or new pathways. Dr. James Schwarz, a surgeon Gwen works with, explains that the lymphatic system differs greatly from person to person. "This may help to explain why, of the many women who have the same surgery and treatment, some develop trouble with lymphedema and some don't," he says.
Another type of lymphedema-one not associated with surgery or radiotherapy-is caused by a malformation or malfunction of the lymphatic system, a condition known as primary lymphedema. It can be present at birth (Milroy's disease), develop at or around puberty (lymphedema praecox), or develop after age thirty-five (lymphedema tarda). It is most commonly related to having too few lymphatic vessels; it is unclear if people are born with this insufficiency or if it develops over time. Some suggest that the defect may be programmed at birth to cause atrophy or early aging in the lymphatic vessels, resulting in inadequate drainage. In Milroy's disease, which is an inherited disorder, there is a complete absence of the initial lymph vessels (the microscopic vessels where fluid first enters the lymphatic system). Primary lymphedema affects females more than males. In 95 percent of cases, swelling occurs in the legs, but it can develop anywhere in the body where structural abnormalities compromise lymph drainage. Primary lymphedema may be linked to heredity or to genetic syndromes, but it can also develop without any genetic component.
Almost all the treatment and recommendations suggested in this book can be applied to both primary and secondary lymphedema. However, we will be concentrating on secondary lymphedema, particularly when it is found in the upper body and occurs after treatment for breast cancer.
Breast Cancer Surgery and the Lymph Nodes
From the early 1900s until recent decades, the standard treatment for breast cancer was a radical mastectomy: removal of the breast, the muscles of the chest wall, and sometimes the underlying tissues, the surrounding skin, and the lymph nodes located in the armpit and above the collarbone. This extensive procedure decreased the local recurrence of cancer and increased survival rates. In recent decades, treatment has evolved toward more conservative surgery. Two surgeries that are currently common are modified radical mastectomy and breast-conserving (or breast-conservation) surgery. Modified radical mastectomy involves removal of only the breast and the axillary (armpit-area) lymph nodes. Breast-conserving surgery, also called lumpectomy, involves removal of only the localized tumor and the axillary lymph nodes; it is usually followed by radiotherapy and/or chemotherapy. In either case, the removal of the armpit-area lymph nodes is termed axillary node dissection. More recently, doctors have been combining lumpectomy with a procedure known as sentinel lymph node biopsy, followed by chemotherapy and/or radiotherapy.
Let's take a closer look at some of the procedures described above.
As mentioned, modified radical mastectomy involves removing the entire breast as well as the lymph nodes in the armpit. Doctors at the facility where Gwen works estimate that 20 to 30 percent of breast cancer surgeries currently being performed are modified radical mastectomies. If the removed lymph nodes do not show any evidence of cancer, radiation is unnecessary. But some cancer patients have nodes that contain cancer cells. Dr. Schwarz explains that if four or more lymph nodes test positive for cancer, radiation is recommended. Studies are underway to determine the best protocol to follow when fewer than four lymph nodes test positive for cancer.
Several factors can make a mastectomy preferable to a breast-conservation surgery. Some of them are
* multiple tumors in the same breast
* a large tumor, especially in a small breast
* a patient who does not want or cannot tolerate radiation
* cancer of the type termed inflammatory breast cancer
* the desire of the patient
Dr. Schwarz says one reason why a patient may request a mastectomy rather than a lumpectomy is if she has a medical history that puts her at higher risk for cancer-for example, someone who had Hodgkin's disease as a child and who wants to reduce her risk of breast cancer in the future. But reasons for choosing a mastectomy can vary widely. Gwen knows of a breast cancer patient who requested a mastectomy because she was an avid hunter, and every time she fired her rifle it recoiled and bruised her breast.
Some women even request a mastectomy of the uninvolved side (the breast without cancer). Patients at high risk for recurrence of cancer, such as women who have the gene that predisposes them to cancer, may want to have the second breast removed to reduce the risk. When a mastectomy is performed on a breast considered cancer free, it is referred to as a prophylactic (preventive) mastectomy; the procedure involved is usually a simple mastectomy. Lymph nodes are not normally removed in a simple mastectomy. Dr. Schwarz recommends that patients who want a prophylactic mastectomy wait until they have completed cancer treatment. He says removing a second, unaffected breast during surgery may cause prolonged healing time, which can delay adjuvant treatment. Adjuvant treatment-chemotherapy, radiation, or hormone therapy prescribed after surgery to ensure that breast cancer does not return-is best begun as soon as possible after surgery.
Axillary Node Dissection
Axillary node dissection, or removal of some of the lymph nodes in the area of the armpit, is performed in most types of breast cancer surgery to determine the progression of the cancer. Determining the extent and the characteristics of the cancer, a process called staging, helps the medical team decide which, if any, post-surgical treatments to recommend. The status of the axillary lymph nodes remains the single most important predictor of survival from breast cancer.
Axillary lymph nodes are categorized as level I, II, or III, which roughly corresponds to their location in the underarm area (see Figure 1.2). Axillary node dissection can involve the nodes at any of these sites. In general, level I and sometimes level II nodes are removed during the procedure. Level III nodes are rarely removed. Dr. Schwarz explains why: "Removal of nodes at level III increases the risk of further destruction of lymphatics and [therefore] increases the risk of lymphedema. It is rarely done except in cases where levels I and II are highly involved in the cancer."
Axillary lymph node dissection can contribute to the development of lymphedema. It is commonly accepted that the greater the extent of lymph node dissection, the greater the risk of lymphedema. Some women with lymphedema bemoan the fact that doctors removed their lymph nodes only to find an absence of cancer in the nodes. Still, evidence shows that even when lymph nodes test negative for cancer, axillary node dissection can increase survival rates.
Some situations require no removal of lymph nodes at all, such as when the cancer is a small carcinoma in situ (cancer that has not spread to neighboring tissues). In this case, the risk of lymph node involvement is less than 1 percent. Dr. Schwarz says there are other cases in which axillary node dissection may not be recommended, for example, if the patient is an elderly woman with a slow-growing tumor.
Sentinel Node Biopsy
In recent years, sentinel node biopsy (SNB or SLNB), which provides an alternative to a complete axillary node dissection, has been a major advance in the treatment of breast cancer. In this procedure, either a blue dye or a sulfur colloid is injected into the breast around the site of the original tumor. The dye travels through the lymph vessels to the first (and often the second) lymph node in the axillary bed of nodes. The first lymph node, the sentinel node-plus often an additional node or two-is then surgically removed and examined for cancer by a pathologist while the patient is still in surgery. The idea behind the procedure is that the lymph nodes most susceptible to a spread of cancer would be the first ones that the lymphatic vessels travel to from the site of the tumor. If there is no evidence of cancer in the sentinel node(s), no more nodes are removed and axillary node dissection can be avoided.
A number of studies have confirmed that the absence of metastasis (the spread of cancer) in the sentinel node reliably predicts the absence of metastasis in the remaining axillary nodes. In particular, SLNB can be a safe and accurate method of screening the axillary nodes for metastasis in women with a small breast cancer. If the sentinal node does show evidence of cancer cells, a complete axillary node dissection can then be performed while the patient is still under anesthetic. In such a case, removing all the remaining lymph nodes is currently standard practice; however, it is not clear that doing so improves survival rates. Studies are currently underway to evaluate this issue.
Women who undergo SLNB experience significantly fewer problems after surgery than those who undergo axillary node dissection. Patients with SLNB experience less lymphedema, improved range of motion in their arms, less pain and numbness, and fewer seromas (pockets of swelling at the surgical site) than those with axillary node dissection. Studies show that these benefits can continue for up to twelve months. Patients who've undergone SLNB also experience fewer problems with axillary web syndrome (cording and tightening of tissue in the armpit) than patients who've had axillary node dissection.
Surgeon Wayne Gilbert has been involved in sentinel lymph node research. At the health-maintenance organization where he works, SLNB combined with breast-conservation surgery has become standard practice for breast cancer patients who meet the criteria for that procedure. Of his patients who qualify for SLNB, he says about 80 percent choose SLNB over axillary node dissection. Some patients who qualify for SLNB, however, still choose to have the lymph nodes removed.
Doctors will not recommend SLNB in the following cases:
* When the breast cancer has been biopsied, in which case there may be existing scar tissue that makes it less amenable to accurate sentinel node biopsy * When there is a large tumor or there are multiple sites of cancer * When there is clinical evidence, based on a doctor's physical examination of the area, of axillary node involvement * When the patient has undergone neoadjuvant chemotherapy (chemo given prior to surgery to shrink the tumor) * During pregnancy or lactation
Excerpted from Lymphedema by Jeannie Burt Gwen White Copyright © 2005 by Jeannie Burt and Gwen White. Excerpted by permission.
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Most Helpful Customer Reviews
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I bought this book because I am at risk for lymphedema. There is very little information out there about this condition. Doctors don't tell you much. It was reasurring to realise that although the condition is not curable it is manageable. I have recommended it to several girls in my support group. Every breast cancer patient and her medical team should read this book.
Anyone who has had breast cancer needs this book. It is full of very helpful information on prevention, and treatments for lymphedema. I am not an avid reader and I couldn't put it down. Thank you so much for writting it, now we have a resource. Beth