Onconurse.com -- Fact Sheet

Kidney Cancer Resources

This list includes resources you're likely to use most often and those that are the richest sources of kidney-cancer-specific information. All entries in each category are listed in alphabetical order, not by importance.

Kidney cancer organizations

  • The California Kidney Cancer Foundation
    2100 Webster St., Suite 326
    San Francisco, CA 94115
    (415) 885-8600
    This organization was founded to make new and advanced forms of therapy for kidney cancer readily available in Northern California. Its web site has treatment information, resources, and patient stories.

  • The Kidney Cancer Association
    1234 Sherman Ave., Suite 203
    Evanston, IL 60602-1375
    (800) 850-9132 or (847) 332-1051
    The Kidney Cancer Association, founded in 1990, is an organization of patients, family members, physicians, researchers, and other health professionals. They provide patient information on the disease, its treatment, clinical trials, current news, a videotape lending library, a chat room for patients, and many other services.

Major organizations providing cancer information

  • American Cancer Society (ACS) National Office
    1599 Clifton Road NE
    Atlanta, GA 30329-4251
    (800) ACS-2345
    The American Cancer Society has many national and local programs to help cancer patients with travel, lodging, and emotional support. They also offer a 24-hour support line for both English- and Spanish-speaking cancer patients.

  • National Cancer Institute (NCI)
    Bethesda, MD 20892
    (800) 4-CANCER
    A division of the US National Institutes of Health, the NCI has an enormous web site, numerous statements, booklets, and books about cancer treatment and care, and a hotline to help cancer patients with a variety of issues such as physician referrals. To learn of the newest treatments available, call (800) 4-CANCER and ask for the PDQ (Physicians Data Query) summary for kidney cancer. These free statements explain the disease, state-of-the-art treatments, and ongoing clinical trials. There are two versions available: one for patients that uses simple language and contains no statistics and one for professionals that is technical, thorough, and includes citations to the scientific literature. The PDQ can also be found on the Internet at http://cancernet.nci.nih.gov/pdq.html.

Kidney cancer Internet support groups

Internet support groups (also called listervs) are free email discussions on specific topics of interest. Each subscriber receives a copy of an email sent by any member of the group. Some active groups generate dozens of messages a day. If you subscribe to the "digest" mode, you will receive one email containing all of the messages posted that day. Email discussion groups are an excellent way to connect with people in similar circumstances.

  • The Association of Cancer Online Resources (ACOR) hosts dozens of cancer email discussion groups. ACOR offers a handy automatic subscription feature for discussion mailing lists at www.acor.org. Click on mailing lists (on the left navbar), then click on the group you are interested in joining. Discussion groups hosted by ACOR include KIDNEY-ONC, an unmoderated discussion list for patients, family, friends, researchers, and physicians to discuss clinical and nonclinical issues pertaining to kidney cancer, renal cell cancer, and transitional cell carcinoma of the renal pelvis. ACOR also hosts discussion groups on CANCER, CANCER-FATIGUE, CANCER-PAIN, CANCER-PARENTS, and dozens of other topics.

  • The Kidney Cancer Association hosts online chats at various times. A list of the upcoming events can be found at www.nkca.org/onlnserv.html.

  • Kidney Cancer UK, at http://kcuk.org, sponsors an unmoderated kidney cancer listerv. Go to the website and click on KCUK forum.

  • OncoLink, at the University of Pennsylvania, has an online FAQ (document answering frequently asked questions) about cancer listservs at http://oncolink.org/resources/faq/listserv.html. If you would like to learn a bit more about them and get answers to some specific questions, this is a good place to start.

Books about kidney cancer

  • The Transformed Cell: Unlocking The Mysteries of Cancer by Steven Rosenberg, MD, PhD. G.P. Putnam's Sons, 1992. Describes the development of immunotherapy for kidney cancer and melanoma by Rosenberg's group at the National Cancer Institute. The treatment section is out-of-date, but it provides a wonderful explanation of how cancer research is done.

  • What You Need to Know About Kidney Cancer from The National Cancer Institute. Free. (800) 422-6237. Basic booklet on kidney cancer.

  • Interleukin-2 Therapy: What You Should Know. National Kidney Cancer Association. (708) 332-1051.

General cancer reading and reference material

  • Cancer Clinical Trials: Experimental Treatments & How They Can Help You by Robert Finn. O'Reilly & Associates, Inc., 1999.

  • The Cancer Dictionary, Second Edition by Robert Altman and Michael Sarg. Checkmark Books, 1999.

  • A Cancer Survivor's Almanac: Charting Your Journey edited by Barbara Hoffman, JD. John Wiley & Sons, 1998.

  • Everyone's Guide to Cancer Therapy, Third Edition edited by Malin Dollinger, MD. Andrews McMeel Publishing, 1998.

  • Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery by Gerald P. Murphy, Lois B. Morris, and Dianne Lange. Viking, 1997.

  • Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner. The MIT Press, 1996.

  • When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy Schlessel Harpham. HarperCollins, 1997.

  • When Life Becomes Precious by Elise Needell Babcock. Bantam Books, 1997.

  • The Chemotherapy and Radiation Therapy Survival Guide by Judith McKay and Nancee Hirano. New Harbinger Publications, 1998.

  • Sexuality and Fertility After Cancer by Leslie R. Schover. John Wiley & Sons, Inc., 1997.

  • Working with Your Doctor by Nancy Keene. O'Reilly & Associates, Inc. 1998.

Online resources

  • CancerGuide
    Steve Dunn, a kidney cancer survivor, clearly explains cancer types and staging, chemotherapy, pathology reports, and the pros and cons of researching your own cancer. He also recommends books and includes inspirational patient stories. He has links to many of the best cancer sites on the Web. Also read Steve's Kidney Cancer Page at http://cancerguide.org/kidney.html.

  • CancerNet
    An NCI sponsored comprehensive source of cancer information including types of cancer, treatment options, clinical trials, genetics, coping, support, resources, and cancer literature. CancerNet is one of the most comprehensive information sources for cancer patients on the net.

  • CanSearch: Online Guide to Cancer Resources
    Service of the National Coalition for Cancer Survivorship that leads you step-by-step through an online search.

  • Chiron Corporation
    Patient information page from the company that produces IL-2. They have basic information on kidney cancer, treatment with IL-2, and information on their patient assistance program for people who cannot afford IL-2.

Clinical Trials

  • http://clinicaltrials.gov
    A consumer-friendly database sponsored by the National Institutes of Health that provides information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide.

  • National Cancer Institute Frederick Research Center Kidney Cancer Page
    The National Cancer Institute studies the genetic basis of kidney cancer. This Web page details current research and introduces the members of the multidisciplinary team of clinicians and scientists at the National Cancer Institute who study and treat patients with kidney cancer.

  • OncoLink
    OncoLink was founded in 1994 by University of Pennsylvania cancer specialists to help cancer patients, families, healthcare professionals, and the general public get accurate cancer-related information at no charge. It contains general information, symptom management, psychosocial support and personal experiences, overviews of different types of cancer, frequently asked questions, treatment options, and current news.

  • PubMed
    The National Library of Medicine's free search service provides access to the 9 million brief abstracts from technical journals in MEDLINE (with links to participating on-line journals) and other databases. It also includes FAQs, news, and clinical alerts.

  • The International Kidney Cancer Symposium video clips can be found at www.cancereducation.com

  • The Transitional Cell Carcinoma Association (TCCA)

Free air services

  • Air Care Alliance
    (800) 296-1217
    ACA is a nationwide association of humanitarian flying organizations. Founded in 1990, ACA members have safely flown 24,000 patients to and from medical treatments.

  • Corporate Angel Network, Inc. (CAN)
    Westchester County Airport, Building 1
    White Plains, NY 10604
    (914) 328-1313
    Fax: (800) 328-4226
    A nationwide nonprofit program designed to give patients with cancer the use of available seats on corporate aircraft to get to and from recognized cancer treatment centers. Patients must be able to walk and travel without life-support systems or medical attention. There is no cost or financial need requirement.

Companies that will do medical information searches for a fee:

  • The Health Resource, Inc. (501) 329-5272

  • Can Help (360) 437-2291

  • Planetree Health Resource Center (415) 923-3680.

  • Schine On-Line Services (800) FIND-CURE

This resource list was developed by the editors of Patient-Centered Guides, a leading US publisher of health and medical content. We have published information on advanced breast cancer, colon and rectal cancer, non-Hodgkin's lymphomas, cancer clinical trials, childhood cancer, childhood leukemia, and other topics. For more information, call (800) 998-9938 or visit www.patientcenters.com.

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