You may want to supplement your learning from my prostate cancer story by reading other information about prostate cancer on this second page of this two-page website, which contains the following sections:
When I began educating myself about prostate cancer, I had trouble understanding some of what I was reading because I did not know, for example, that PCa or PC referred to "prostate cancer"; the acronym DRE meant "digital rectal exam"; EBRT referred to "external beam radiation therapy"; RP referred to the prostate cancer treatment of "radical prostatectomy"--one type of prostate surgery. The word "terms" includes glossaries, acronyms, and abbreviations. Prostate Cancer Research Institute Glossary This PCRI glossary has a large number of entries and may be downloaded without paying a fee. PCRI Acronyms and Abbreviations Here you will learn, for example, that RRP means "radical retropubic prostatectomy" whereas RPP means "radical perineal prostatectomy". You will also learn that SI refers to "seed implantation"--the common prostate cancer treatment of inserting radioactive seeds into the prostate. A third example is that the PSA of "PSA test" means "prostate specific antigen". This glossary also has a large number of entries.
This sample of sites comes from a variety of sources--a public university medical center, patients, the widow of a former patient, an industrious patient, and a private institute. University of California, San Francisco Written for non-physicians, this site contains authoritative but not lengthy articles on detection, diagnosis, and treatment of prostate cancer. Additional information is available by links in the articles; for example, in the article on treatment, there is a link to an article on nutrition. I read the prostate cancer stories on this site soon after my diagnosis, which helped me feel less alone. This is a good site for people beginning their prostate cancer education. Created and managed by an Australian prostate cancer survivor and his wife, and since 2003 managed by another prostate cancer survivor. A little over a year after I was diagnosed, inspired by the men who shared their prostate cancer stories, I added mine to YANA Now. This award-winning site was created and is managed by the widow of a prostate cancer patient who describes it as "a patient-centered, evidence-based prostate cancer news source and resource portal." It includes basic information on biopsy and diet, descriptions of authoritative books, and links to articles about the various treatments. An attractive, informative site which is easy to navigate.
This site describes itself as an "encyclopedia of information," a description with which I agree. It contains information for beginners as well as for the well-informed. Included is the prostate cancer story of the site's creator--an outstanding example of a patient being in charge of his treatment. The site emphasizes high-quality prostate cancer articles and research studies on the diagnosis, treatment, and management of prostate cancer. Some of the additional resources offered by the creator of the Patients Helping Patients website are an authoritative online book on prostate cancer, chat rooms, and five discussion groups (which I sometimes call "mailing lists"). One of the groups, for example, is for any prostate cancer topic (PHML) and another for women only (PHCa-Ladies). Prostate Cancer Research Institute PCRI was founded by two medical oncologists who are internationally recognized prostate cancer specialists. The Insitute educates patients and their families about prostate cancer--advances in diagnosis and treatment; resources; cutting-edge treatment centers; and treatment choices which minimize side effects. It issues an outstanding free periodic publication, PCRI Insights, and provides a free telephone consultation service (which I used twice and found to be very helpful, 800-641-7274). Their website includes a list of recommended prostate cancer specialists, a wealth of informative articles, the online version of the PCRI Insights Newsletter, etc.
Unlike books and websites, these boards are interactive, enabling a patient and/or his significant others to, for example:
LINKS NEAR TOP Some of what I learned from these prostate cancer boards I did not find in books. What follows is a list of enough boards to keep you well-informed: This board welcomes questions and contributions on all aspects of prostate cancer and is one of the major lists. To view the archives, you must subscribe. The subject lines of the posts to this list refer to it as "PP." This board is "a moderated mailing list which permits patients to asked focused, clinical questions about prostate cancer. Timely responses are provided by physicians expert in the treatment of prostate cancer." It also states that "All ideas should be shared with your medical doctor. The information you are about to read is not medical advice." To view the archives, you do not have to subscribe. The subject lines of the posts to this board refer to it as "p2p." If you decide to ask the physicians for advice about your prostate cancer, you must include a Prostate Cancer Digest (PCD). In addition to a link to subscribe, there is a link to the instructions for preparing your PCD. (I created my own version of a PCD, which allowed prostate cancer physicians I consulted to spend less time shuffling through a stack of test results and consultation reports and more time answering my questions.) Clicking on the link to Prostate Help takes you to a website which contains 17 boards. Here is a sample if the subjects covered:
Although the name of this board is "SeedPods", another term for brachytherapy (implanting radioactive seeds in the prostate), there are some posts about external beam radiation therapy (EBRT). In addition to a link to subscribe, there are links to patients' accounts of their brachytherapy treatment, to websites of facilities which do brachytherapy, to a physician's answers to frequently asked questions, etc. To search the archives from August 8, 2003 to the present, you must subscribe. The subject lines of the posts to this board refer to it as "SeedPods." This page contains descriptions of and links for subscribing to 14 boards. Two of the 14 are ones I have presented above--Patient to Physician and SeedPods. Thirteen of the boards have archives and this page contains links to them. One of the boards, Circle, emphasizes emotional support for the men and "their wives, families, friends, and significant others."
During my career, some of my activities were:
I began to write about these skills and their effects on conversations and everyday relationships. After I retired, I used my unpublished writings to create a public service website on empathic listening to inform people of its benefits and basic methods.
More Prostate Information: I also have a website to help men with urinary problems caused by a noncancerous enlarged prostrate* (BPH). (*I deliberately misspelled "prostate" as "prostrate" to enable people who misspell "prostate" to find this website.) NOTE: If you liked this website, emailing me your thanks will reward me for creating it and help sustain my motivation to keep it going for future readers.Link: home page (page 1) of this website. Copyright © 2002, 2003, 2005, and 2006 by Lawrence J. Bookbinder, Ph.D. I also have a website on the differences and similarities between sympathy and empathy.
|