Melanoma:
A Newly Diagnosed Patient's Brief Guide to Information on the Web

In a posting to the Bulletin Board of the Melanoma Patients' Information Page (MPIP), I offered to send a newly diagnosed patient a short list of readings that would help her gain a general understanding of the disease and provide her with some vocabulary and knowledge that would help her talk with her doctors and participate in decisions about testing, treatment, and follow-up. Several others subsequently said they would like to see the list, so I decided to put it on the Web on its own and post the URL on the MPIP site.

Things to Read Before Your Next Appointment

Just Diagnosed With Melanoma: Now What ?: This is a quick and informative read the Melanoma Research Foundation.

What You Need To Know About™ Melanoma: An introductory online booklet that covers all the basics in layman's terms from the National Cancer Institute (NCI) of the U.S. National Institutes of Health. Frequently updated. An excellent first read.

American Cancer Society Patient's Bill of Rights: Learn about what to expect from your cancer care team and what responsibilities you should accept for your own care.
Melanoma (PDQ®): Treatment: Also from the NCI, provides some background information on melanoma, defines the four stages of melanoma and lists diagnostic tests and treatments available by stage, with links to definitions or further information.
Intraocular (Eye) Melanoma (PDQ®): Treatment: Same as the previously listed PDQ, but covering this less common form of melanoma.
Melanoma Treatment Guidelines Version 2.2009: If you really want to participate in decisions about treatment, this is a must read publication. It discusses tests and procedures in reasonably thorough but understandable language and provides, in "decision tree" format, an relatively easy-to-follow guide to the decision making process used by doctors in evaluating and recommending treatment for your melanoma. Sections include: Tests and Exams for Melanoma Work-Up (Diagnosis and Evaluation), Melanoma Stages, Types of Treatment for Melanoma , Other Things to Consider During and After Treatment, and About Clinical Trials. Includes a Glossary
American Joint Committee on Cancer Chapter on Melanoma (Link is to a commercial publisher who will supply a copy to patients for a shipping and handling charge.): A technical presentation with lots of sophisticated statistics. Includes survival statistics by stage.

Cleveland Clinic Disease Management Project Article on Melanoma

Contains much of the information in the American Joint Committee on Cancer Chapter on Melanoma, including survival statistics by stage, but is available online for free.

Caveat Lector – Let the Reader Beware

Evaluating Health Information on the Internet: As with all other information on the Web, the quality of health information on the Web varies from excellent to poor to downright dangerous. This document from the National Cancer Institute offers a set of questions that will help you evaluate the quality of information you find.

Sources of Fuller Information on Specific Tests, Treatments and Complications

Sentinel Lymph Node Biopsy: Sentinel lymph node biopsy is a surgical staging procedure that is recommended for many patients diagnosed with melanoma. For a non-technical patient-oriented discussion of the procedure, see WebMD Health's Sentinel Lymph Node Biopsy. For a more complete -- and technical -- discussion, see eMedicine.com's Sentinel Lymph Node Biopsy in Patients With Melanoma.

Melanoma Information Center: A multi-page whose, "mission is to empower patients with current information on all aspects of the management of melanoma in order to provide support and hope, as well as to facilitate informed decisions." Particularly useful are the articles describing treatments by stage. These are reasonably up-to-date and very thorough.
eMedicine.com: A large collection of excellent articles. Requires free registration to search for and retrieve articles by keyword. To see a sample article without registering, see this article on Lymphedema. From the site: "The eMedicine Medical Library is a constantly updated Clinical Knowledge Base of original medical review articles. Nearly 10,000 contributors have created over 7,000 medical review articles within the Clinical Knowledge Base. All eMedicine articles go through a 5-step peer-review process (four physicians and a Doctor of Pharmacy) to ensure that a consistently high level of content quality is maintained. The following sections contain details on becoming an eMedicine author or editor."
AllRefer Health.com: Very brief (usually three to six paragraphs) articles. Searchable by keyword, but the results can be confusing and "off-point." There is a hierarchical menu at the left of the screen which provides better access. Most useful for brief explanations of various tests. For example, see MRI.
The Biopsy Report: A Patient's Guide: This article is not specific to melanoma biopsies, but it is very informative on a subject that causes a great deal of confusion among patients.

The Psychological Issues Faced by Melanoma Patients: Overwhelming worry and depression are common among persons diagnosed with melanoma. This article will help you to understand your emotional reactions to your diagnosis and provides some suggestions for helping yourself and seeking help from others.

Sources of Further Information

melanoma.resources

Elegantly presented, very well organized, regularly checked for currency. The best collection I have found.

MPIP Research Library

If you want to learn everything you can about almost any issue related to melanoma, but you don't want to buy your own medical library, this is a good place to go. Some items a bit out-dated, but this is a great site.

Sun Protection - Learn more about this essential topic.

mailto:fgavett@mail.colgate.edu
Last revised 04/14/2009