Patient Pathfinder: Non Hodgkins Lymphoma

This pathfinder will attempt to introduce you to Non-Hodgkin’s Lymphoma, or NHL, the 5^th most common cancer in the United States (National Cancer Institute, 1998b). Non-Hodgkin’s lymphoma is not actually a cancer at all but is a collection of more than 10 different types of lymphatic cancers (Cherath, 1999), all of which can be distinguished from Hodgkin’s disease, another cancer of the lymphatic system. With a cure rate of less than 25% (Freedman & Nadler, 1997), this type of cancer poses a serious threat to patients who have been diagnosed with it. Still, the greatest protection from its effects is education, and a patient who knows his options will be most successful in combating non-Hodgkin’s lymphoma.

It was estimated that 55,400 new cases of non-Hodgkin’s lymphoma were diagnosed in the United States in 1998. Furthermore, approximately 24,900 people died as a result of the disease (Landis, Murray, Bolden, & Wingo, 1998). SEER, the official registry of cancer incidence in this country, reported that in 1996 the incidence of non-Hodgkin’s lymphoma among all people in the United States was 15.5 per 100,000, an 81.3% increase since 1973 (Ries et al., 1999). Unfortunately, the mortality rate from the disease has also been on the rise, increasing from 4.7 per 100,000 in 1973 to 6.9 per 100,000 in 1996 (Ries et al., 1999). Researchers predict that 56,800 Americans will be diagnosed with non-Hodgkin’s lymphoma in 1999 (American Cancer Society, 1998).

There are various explanations for the increasing incidence rate, which has been rising steadily since the 1960s (National Cancer Institute, 1998b). One explanation is the fact that non-Hodgkin’s lymphoma is a common opportunistic infection among people with AIDS (Berkow, 1997), a disease that was not recognized until the early 1980s. In addition, better reporting and diagnosis since 1973 probably can explain a portion of the increase. It is also necessary to examine the epidemiology of non-Hodgkin’s lymphoma, including some of the risk factors that are associated with the disease. While older people and men are more likely to be diagnosed with NHL, environmental factors have also been linked to this type of cancer. Exposure to certain chemicals like pesticides and fertilizers may put people at greater risk for developing non-Hodgkin’s lymphoma (National Cancer Institute, 1998b). If exposure to cancer-causing materials has increased in recent decades, incidence would have increased as well.

Further incidence and statistical information may be found in the following sources:

Coleman, M. P., Estève, J., Domiecki, P., Arslan, A., & Renard, H. (1993). Trends in cancer incidence and mortality. Lyon, France: International Agency for Research on Cancer.

Harras, A. (Ed.). (1996). Cancer rates & risks (4^th ed.). (NIH Publication No. 96-691). Bethesda, MD: National Cancer Institute.

Scherr, P. A. & Mueller, N. E. (1996). Non-Hodgkin’s lymphomas. In D. Schottenfeld & J. F. Fraumeni (Eds.), Cancer epidemiology and prevention (2^nd ed., pp. 920-945). New York: Oxford University Press.

The only way to accurately diagnose non-Hodgkin’s lymphoma is by biopsy (Berkow, 1997; Margolis, 1995; Watstein, 1998), as currently there are no screening tests available for this type of cancer (Cherath, 1999). The second step of diagnosis following biopsy is staging. Using tools such as x-rays, CT scans, or even bone marrow biopsy (Berkow, 1997), the physician will attempt to determine the number of tumor sites in the body, the location of the tumors, and the presence of any symptoms of non-Hodgkin’s lymphoma (Freedman & Nadler, 1997). Next, using a scale known as the Ann Arbor Staging Scale, the physician will decide how advanced the cancer is. Stages range from I to IV, with I being least serious and IV being most advanced (Freedman & Nadler, 1997).

Because it is so often difficult to detect in early stages, most patients who are diagnosed with non-Hodgkin’s lymphoma are already in advanced stages (i.e., III or IV), meaning the cancer has spread to multiple sites in the body (Berkow, 1997). Most commonly a physician will first detect non-Hodgkin’s lymphoma while conducting a general physical examination (Cherath, 1999). Nevertheless, people can detect the cancer themselves by being alert for specific symptoms which include "swelling of the lymph nodes in the neck, underarm, or groin…unexplained fever, night sweats, constant fatigue, unexplained weight loss, itchy skin, [and] reddened patches on the skin" (National Cancer Institute, 1998b, p. 4). Again, a biopsy is the only way to know for sure if such symptoms are a result of non-Hodgkin’s lymphoma.

The type of lymphoma present and its stage will determine what type of treatment plan a physician will recommend (Cherath, 1999). In very early stages of the disease, the doctor may decide to wait until the cancer begins spreading before actively treating non-Hodgkin's lymphoma (Margolis, 1995). These patients will need to see their physicians regularly to monitor the progression of the tumors (Berkow, 1997). However, as NHL is usually not diagnosed until late in its progression (Berkow, 1997), treatment will typically begin immediately.

The two most common types of treatment are chemotherapy--killing cancer cells with drugs--and radiation therapy--killing cancer cells with high dosages of x-rays. Both result in numerous side effects, many of which are unpleasant (Berkow, 1997; Cherath, 1999; Margolis, 1995; National Cancer Institute, 1998b). In instances where a patient does not respond to the traditional therapies, bone marrow transplantation, or BMT, may be necessary. This is also a common treatment for patients whose cancer recurs after disappearing for a time (Cherath, 1999; National Cancer Institute, 1998b). Surgery is an option used to completely remove tumors from the body (National Cancer Institute, 1998b).

Resources that provide information about general management include all four resources cited above as well as this source, which is specific to AIDS-related non-Hodgkin's lymphoma:

The three most commonly prescribed drugs for the treatment of Non-Hodgkin’s Lymphoma are (Berkow, 1997):

Further information about these drugs, and others used to treat non-Hodgkin’s lymphoma, may be found by consulting the Physician’s Desk Reference (1999).

With the increasing acceptance of alternative medicine, cancer survivors have more and more options available to them in their treatment decisions. Few therapies address non-Hodgkin’s lymphoma specifically, but instead most alternative treatments are believed to help all types of cancer. One definitive source for alternative medicine (Burton Goldberg Group, 1994) describes the following examples of non-traditional therapies:

Dubey, S. (1997). Naturopathy, a cure to cancer. New Delhi: Aravali Books International.

Simon, D. (1999). Return to wholeness: Embracing body, mind, and spirit in the face of cancer. New York: Wiley.

Simone, C. B. (1992). Cancer and nutrition. Garden City Park, NJ: Avery Publishing Group.

While not a complete list of organizations that are working diligently to fight non-Hodgkin’s lymphoma and other life-threatening cancers, these three organizations are the leaders in the efforts against NHL.

"The Cure For Lymphoma Foundation is a nationwide, not-for-profit organization dedicated to funding research and to providing support and education for those whose lives have been touched by Hodgkin's disease and non-Hodgkin's lymphoma" (Cure for Lymphoma Foundation, 1999).

"Lymphoma Research Foundation of America (LRFA), creates, promotes and supports high quality research resulting in more effective, safer treatments and the ultimate cure for lymphoma. The Foundation also provides a comprehensive slate of educational and emotional support programs for lymphoma patients and their families. Through its national, local and grassroots outreach and advocacy work, LRFA leads the lymphoma community in raising awareness of this disease and in the fight to increase government funding of lymphoma research and collaboration between the National Cancer Institute (NCI), the National Institute of Environmental Health Sciences (NIEHS) and the Centers for Disease Control and Prevention (CDC)" (Lymphoma Research Foundation of America, 1999).

"The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients" (National Cancer Institute, 1998a).

The following general cancer newsletter and magazines may be useful for any non-Hodgkin’s lymphoma patient who wishes to keep abreast of new developments in cancer treatment. While not specific to NHL, these periodicals cover issues that all cancer survivors face as they fight the disease. Updates specific to non-Hodgkin’s lymphoma are best covered by the websites of the Agencies and Associations listed above.

"Supports cancer patients and their families, promoting positive attitudes, education, and good medical care. Carries news of cancer research and personal stories from patients. Recurring features include book reviews, Institute news, and letters to the editor" (Krol, 1992, p. 509).

Contact: Cancer Guidance Institute, 1323 Forbes Avenue, Pittsburgh, PA 15219

"Supports and follows the progress of independent research on cancer therapies. Disseminates information on ‘non-toxic’ chemotherapies; provides education on nutrition in relation to cancer and regarding carcinogens in air, food, and water. Recurring features include meeting reports and notices of publications available" (Krol, 1992, p. 509).

Contact: International Association of Cancer Victors and Friends, 7740 W. Manchester Avenue, Suite 110, Playa Del Rey, CA 90293

"This glossy, 70-page magazine ranges from practical advice for coping with cancer to the inspirational stories of survivors. Feature articles include tumor markers, coping with anxiety and depression, insurance and tax advice, and health care jargon. Regular departments include nutrition, humor, and poetry submitted by readers. Covering a broad range of cancer issues, this magazine meets its objective ‘to enlighten and motivate survivors to discuss the issues with their physicians.’ The ads alone are invaluable to helping patients locate products useful for their comfort" (Katz & Sternberg Katz, 1997, p. 926).

Administered by the National Cancer Institute, CancerNet provides online access to PDQ, current cancer information for patients and health professionals. Topics covered include an overview of NHL, statistics, treatment, clinical trials, prevention, alternative medicine, testing, coping, and support. In addition, the site provides an automatic linked search of CancerLit, a database of journal articles and research studies. Users may order NCI publications via the website or simply view many of them online.

"Hem-onc is an unmoderated discussion list for patients, family, friends, researchers, and physicians to discuss clinical and non-clinical issues pertaining to Leukemia, Lymphoma, and Multiple Myeloma. This includes patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices" (da Silva & da Silva, 1999).

Mike Barela, a survivor of Stage IV Hodgkin's disease is the author of this collection of resources about all types of lymphomas. He readily admits he is not a medical professional and warns that his information has not been evaluated for correctness. Still, his sources are reputable, including the National Cancer Institute and other recognized cancer authorities. Updated most recently in the spring of 1999, information on diagnosis, types, treatment, and resources is available in a friendly format. An online glossary is provided for clarification.

A mixture of clinical information, personal stories, and research studies, the University of Pennsylvania's OncoLink is a source for all types of cancer information. The organization of the site is somewhat haphazard, and users must be patient to find the information they are seeking. There does not appear to be a system of organization of its collection. However, a FAQ page is easily accessed, and the site provides original information as well as links to other reputable sources.

The American Cancer Society's lymphoma site provides information on the basics of non-Hodgkin's lymphoma, prevention and risk factors, detection and symptoms, treatment, survivorship, and cancer drugs. Also included is an online glossary and a FAQ page. Visitors to the site may sign up for regular e-mail updates and also may order brochures and publications online. ACS is the nation's premier voluntary cancer organization.

Berkow, R. (Ed.). (1997). The Merck manual of medical information (home ed.) Whitehouse Station, NJ: Merck Research Laboratories.

The Burton Goldberg Group. (1994). Alternative medicine: The definitive guide. Puyallup, WA: Future Medicine Publishing.

Cherath, L. (1999). Malignant lymphomas. In D. Olendorf, C. Jeryan, & K. Boyden (Eds.), The Gale encyclopedia of medicine (Vol. 3, pp. 1858-1860). Detroit: Gale.

The Cure for Lymphoma Foundation (1999). The Cure for Lymphoma Foundation [WWW document]. Available: http://www.cfl.org

Freedman, A. S. & Nadler, L. M (1997). Non-Hodgkin’s lymphomas. In J. F. Holland, R. C. Bast, D. L. Morton, E. Frei, D. W. Kufe, & R. R. Weichselbaum (Eds.), Cancer medicine (4^th ed., pp. 2757-2795). Philadelphia: Williams & Wilkins.

Katz, B. & Sternberg Katz, L. (1997). Magazines for libraries (9^th ed.). New Providence, NJ: R.R. Bowker.

Krol, J. (Ed.). (1992). Newsletters in print (6^th ed.). Detroit: Gale Research.

Landis, S. H., Murray, T., Bolden, S. & Wingo, P. A. (1998). Cancer statistics, 1998. CA – A Cancer Journal for Clinicians, 48(1), 6-9.

Lymphoma Research Foundation of America. (1999). LFRA [WWW document]. Available: http://www.lymphoma.org

Margolis, S. (Ed.). (1995). The Johns Hopkins medical handbook: The 100 major medical disorders of people over the age of 50. New York: Rebus.

National Cancer Institute. (1998b). What you need to know about non-Hodgkin’s lymphoma (NIH Publication No. 99-1567). Bethesda, MD: Author.

Physician’s Desk Reference (53^rd ed.). (1999). Montvale, NJ: Medical Economics Company.

Ries, L. A. G., Kosary, C. L., Hankey, B. F., Miller, B. A., Clegg, L., & Edwards, B. K. (Eds.). (1999). SEER cancer statistics review, 1973-1996. Bethesda, MD: National Cancer Institute.

A resource designed for laypeople to introduce them to common terms used in the discussion of HIV/AIDS. Alphabetical arrangement makes term searching easy, though the definitions of terms can be somewhat complex. A source such as this is impossible to keep current, as new advancements in the field add new terminology to the lexicon regularly.

Organized into treatments, medical conditions, and less serious health issues, this volume gives patients alternatives to traditional medical therapies. In an attempt to remain unbiased, it even notes instances when practitioners have been legally penalized for conducting certain therapies. The reader should be aware that the publishers are generally in favor of alternative therapies, as evidenced by an introduction from new-age guru Deepak Chopra.

"A peer-reviewed journal covering all aspects of cancer management. Its mission is to act as a professional education vehicle for the American Cancer Society, providing primary care physicians with up-to-date information on all aspects of cancer diagnosis, treatment, and prevention. Written for the clinician in primary care, oncology, and related specialties, the articles are both invited and unsolicited" (http://www.cancer.org//bookstore/cancerca.html).

This book attempts to give cancer patients alternatives to traditional therapy by providing information on eating healthily to cure the body. Much of the book is devoted to cancer prevention through diet.

A 67-chapter textbook for use by the medical professional, this book addresses not only specific types of cancer but also risk factors, prevention measures, and policy making. Much of the writing would be too advanced for the layperson, but the volume is organized into short, readable chapters.

Another medical textbook that examines biological causes of cancer in general as well as the specific types. Its two-volume format may be overwhelming for the layperson, but that is not for whom it is written anyway. The terminology is likely too advanced for most readers.

A publication of the National Institutes of Health, this volume summarizes incidence and mortality data for various types of cancers including non-Hodgkin's lymphoma. The layout is colorful and includes graphs and tables. As with most statistics, availability of current data is impossible. This 1996 publication only provides data through the early 1990s.

A text-heavy source for basic information on a variety of topics in the health sciences. This encyclopedia is written for the non-professional, as evidenced by key terms boxes and bold print cross-reference terms. Non-Hodgkin's lymphoma is listed under "malignant lymphomas," but it is cross-referenced if the user first looks under "N". Following the entry is a list of books and other resources for more information.

The Johns Hopkins Medical Handbook: The 100 Major Medical Disorders of People over the
Age of 50

Using a thorough peer review process, Johns Hopkins has assembled a collection of publications from respected health organizations. Limited in scope to diseases that affect people over age 50, the source is nonetheless a comprehensive reference tool for that population. Cross-references throughout the entries lead readers to related topics of interest.

Designed for assisting librarians with collection development, this reference book is a valuable tool for finding popular magazines and journals on specific topics. The index is easy to use, and each entry includes classifications (e.g. "research journal") so users know for whom each title is written.

The home edition of this popular medical reference tool is comprehensive, yet clear. Its small print may make reading difficult for some users because it is packed with so much information in an easy-to-handle size. Each section provides anatomical and physiological background information to held uneducated users put medical information into a context for understanding.

The official search engine for MeSH terms, the browser is easy to use for people who have basic familiarity with MeSH structure. Otherwise, terms such as "main headings" or "qualifiers" will be difficult to understand. By simply entering a basic search term, even novices will locate useful results. However, interpretation likely will be problematic.

Introduces the cancer patient to the alternative medical practice of naturopathy, a type of therapy relying on natural methods such as diet modification and exposure to nature. Practitioners are graduates of naturopathy programs, though currently many are thought of as quacks.

This source provides access to the names, descriptions, and contact information for newsletters available to libraries and the public. Topic indexing allows for simple searching, as does collocation within subject headings. Some entries may no longer be available as the volume is printed annually and not updated in between.

An overview of the biological basis of the development of non-Hodgkin's lymphoma. The page also includes easy-to-understand physiological descriptions of the lymph system, a description of lymphoma classification systems, and basic statistics. Information on prevention, detection, and treatment follows on linked pages.

The definitive source for drug information in the medical profession. The PDR allows users to access information by manufacturer, brand or generic drug name, or color product photographs. It is limited to so-called participating manufacturers--those who have voluntary contributed to the publication. Still it is a very thorough source for most drug reference needs.

This book introduces the concept of ayurvedic medicine as an alternative to the traditional allopathic model. Emphasis is on maintaining balance through diet and lifestyle modification.

The SEER CSR is simply a collection of tables of incidence and mortality statistics. Categories include break down by gender and race, though without some knowledge of epidemiological statistics, the user may be confused by all of the numbers. It does not provide interpretation of the statistics.

This volume presents international data on cancers, including non-Hodgkin's lymphoma. Published with sponsorship by the World Health Organization, one can be comfortable with the validity and reliability of the data. The large volume reads like a textbook, however, and may be too advanced for some readers.

A patient-friendly handbook that introduces its reader to the disease. As it is published by the federal government's National Cancer Institute, it is available for free upon request from the Cancer Information Service at 1 800 4-CANCER. An online hyperlinked version is also available. Gives an overview of non-Hodgkin's lymphoma from diagnosis to follow up and survival. Unfamiliar words are printed in italics, and definitions appear in a glossary at the back. Information referrals are limited to the National Cancer Institute programs.

Name	Theory
Antineoplaston Therapy	Uses supplements of the body’s own anti-neoplaston polypeptides to replace cancer causing agents in DNA
714X	Injects nitrogen into body so cancer cells stop attacking healthy cells to take their nitrogen
Hydrazine Sulfate	Attempts to reverse cachexia, the general wasting away of cancer patients that leads to death
Laetrile	Stimulates the productions of tumor-fighting antibodies
Shark Cartilage	Prevents flow of blood to tumors, stopping their growth and causing their death
Immuno-Augmentive Therapy	Aims to keep 4 blood components in balance; imbalance leads to cancer
Livingston Therapy	Restores cancer-causing weakened immune system through vegetarian foods, vaccines, and supplements