This is an attempt to provide a list of some of the best sites with information on breast cancer. It is designed largely to help others do research regarding treatment options for breast cancer, with some other items on art, advocacy, etc., as well.Ê
NOTE:Ê Recent Oct. 2, 1997, studies in the NEJM about the survival advantages of radiotherapy after mastectomy:
Also, Musa Mayer's site on metastatic breast cancer and her new book:.
Finally,I have also recently added
a new Canadia & French language site and a new section "M" on How
to Read a [Medical] Paper.
If you want to get back to this,
click on Bookmarks and then drag down to "Add Bookmark." (At least in Netscape,
you can also later click on Window and then drag down to "Bookmarks," then
highlight something like this page, and while holding down the mouse button,
drag it up to the top of your bookmarks. that makes it even easier to get
back here.
Êsubscribe Breast-Cancer Your Name
Ê(Put in your actual human name where I've written "Your Name" in that line.)
Ê(If you were not sure what I said
about subscribing, do this: just sweep your mouse (with the button held
down) across the bold-faced phrase earlier about subscribing, then take
the cursor arrow up to "Edit" and down to "Copy" at the top of your page,
then come back and click on the blue phrase that starts with "listserv"
and, when you get to a place where you can write a message, go into the
text area, take the cursor arrow up to "Edit" and down to "Paste" and send
that message!)
Êhttp://www.biostat.wisc.edu/bca/bca.html
ÊA nicely put together collection of Frequently Asked Questions, News Releases, Breast Cancer Resources, and a place to ask their staff simple questions (complicated ones tend to get the response that you should go ask your oncologist).
Ê2. Medical Housecall on the Net (Applied Medical Informatics, Inc.)
Êhttp://www.ami-med.com/mhc/ top/000913.htm
ÊApparently this is a demo of something that the company sells, but what is on the Web appears pretty complete and comprehensive. It is a concise overview of breast cancer issues, a good starting point for the person first trying to understand what has happened to her/him with a breast cancer diagnosis.
Ê3. Breast Cancer for Patients (part of Pathology Simplified)
Êhttp://www.erinet.com/fnadoc/b rest.htm
ÊSimple, clear overview of breast cancer, including photos and diagrams (not only of cancer, but of the machines you will encounter!).
ÊThis is a fabulous collection of links to everything: an annotated list of other Web sites; search engines to find articles from popular magazines; the NCI/PDQ statements; links to Medline and other searches. It is very pleasantly organized in a very eye-friendly way. It has links to probably everything else in this message, and more!
ÊThis site is so comprehensive (and well organized) as a link to other links, that I'm not even sure why I am publishing my own list of links, after spending a lot of time looking through this Web site! (I looked again in mid-September and was bowled over again.)
Ê2. CancerGuide: Steve Dunn's Cancer Information Page
ÊLots of evaluations, descriptions, and advice of what you will find out on the Web. Extremely comprehensive. You can go through a few levels of pages to get to a Breast Cancer FAQ (Frequently Asked Questions) -- http://cancerguide.org/breast.html -- but you should also look at all the material he has that applies to cancer and your research generally. This site is better than just a collection of links, because it picks and chooses.
Ê3. University of Pennsylvania's OncoLink
ÊKind of an old favorite, perhaps because when I started doing WWW searches for information on breast cancer, this is where I found the most at first. Scroll down on the first page to get to "Diseases-Oriented Menus," and from clicking there you get to "Breast Cancer." Lots of information on treatments, etc.
Ê4. National Cancer Institute Publications, incl. "PDQs" - Physician Statements - Breast Cancer
ÊThis is the official National Cancer Institute's CancerNet. Although some other WWW sites may provide alternative interfaces, even ones that you prefer, when information is updated it is going to show up here first. And this interface is improving also.
Êhttp://imsdd.meb.uni-bonn.de/cancernet/cancernet.html (Bonn-formatted)
ÊThis is a full list, nicely formatted, of available NCI cancer publications, many in full text. Very easy-to-use site. Full-text publications take a long time to load because they are all on one page. But if you want to print out the entire document, for example, than this is easy here.
http://oncolink .upenn.edu/pdq_html/1/engl/100013.html (U Penn-formatted)
ÊThis document, often updated monthly, is the official advice of NCI about diagnosis and treatment of Breast Cancer. This is the hyperlinked version of the PDQ. Each section is on a separate Web page, so loading is much easier than at the Bonn site.
ÊThere is also a Patient Statement (see the Boon site, for example), but the one for physicians is more complete and has footnotes to specific studies. Therapeutically, it leans (I think) toward being "quasi-leading-edge," rather than leading-edge, perhaps being several months behind what the most advanced specialists are in fact doing in their own medical practices, but it is an excellent source for a lot of information.
Ê5. Health A-Z
ÊAlthough not cancer-specific, this site has lots of well-organized links. For example, "Journals and Periodicals" at this site can take you to a list that provides links to such items as the Journal of Clinical Oncology, Journal of the National Cancer Institute, the ACS's Cancer, and so on.
Ê6. Clinical Practice Guidelines
http://www.asco.org/prof/pp/html/f_gs.htm
ÊAmerican Society of Clinical Oncology "Clinical Practice Guidelines." These are useful to use as a baseline for comparison with a doctor's recommendations. Doctors should be at least up-to-date on these. In some instances, of course, guidelines such as these lag behind the latest, best practices but they are definitely a place to start.
Ê7. Chemosensitivity/Chemoresistance Testing
I need to find one or two good Web sites for this issue, as it is rapidly growing.
Ê8. Sentinel Node Biopsy
I need to find one or two good Web sites for this issue, as it is also rapidly growing.
Ê9. Canadian/French Language Sources
Canadian Breast Cancer Network/RŽseau canadien du cancer du sein - survivor-directed, national network of organisations and individuals. There are both links to Canadian resources and groups and links to French-language sites on breast cancer.
Ê10. What I've Omitted
ÊI have omitted the NYSERNet Web Page from this section. I personally find it to be sometimes outdated, sometimes sloppy, and sometimes superficial. I glanced through it again this September and ended up with the same conclusion. Others may disagree.
Anyway, I've provided a link to it elsewhere on this page, under 5 Best Discussion Forums (and there, under "Breast-Cancer Discussion List"), for those who in fact do disagree.
Ê http://www.ncbi.nlm.nih.gov/PubMed/
This site, Pub Med at the National Library of Medicine, allows free Medline searches into a huge database of 6.5 million abstracts (or is it 8.4 million, as claimed by Medscape, see below?) of medical and scientific journals on cancer treatment (and of course other topics). Use of good search strategies can turn up 50 or 100 abstracts, not a million!
Êhttp://www.healthgate.com/HealthGate/MEDLINE/search.shtml
ÊThis site, HealthGate, also allows anyone to conduct free searches. Hint: Remember that it only searches for the last two years unless you check a different box. REMEMBER also that if you want to use connective words like "and" and "or," you must click on the "advanced search page."
Êhttp://www.healthy. net/library/search/medline.htm
ÊHealth World Medline Search/ Also free; perhaps a bit harder to use. Note that its search engine assumes that "and" is between each word you type, unless you enter something like "or" instead.
Êhttp://192.246.193.14/ Home/Search/search.mhtml
ÊMedGate Medline Search. Also free; about the same as HealthGate to use, but requires you to remember your free account name and password.
Êhttp://www.grhlib.demon.co.uk/medline.html
ÊDr. Felix's Free Medline Search. Sometimes it is difficult to make contact with this server because it's so hard to squeeze your Web session into that narrow little cable running into the Atlantic that is filled with business messages. Or something.
Ê2. For-Pay Medline Searches
ÊInfotrieve. You need an account for this (a nearby university probably has one; perhaps its science library), but it is slick.
Êhttp://enterprise.bih.h arvard.edu/paperchase/
ÊPaper Chase. Said to be easier to use, but costs $16 per hour. I personally have no problem using the free HealthGate service instead.
Ê3. Yahoo: Multiple WWW Searches
ÊSearching the World Wide Web itself can yield information in places not indexed in Medline. My personal method is always to go to www.yahoo.com for my searches. Why? Because at the bottom of the screen you get hot-links to about 8 other WWW search engines, and by clicking on any of them after your search, your search terms are already filled in for you into those search engines. The result is a quick way of checking several search engines.
4. How to Search the Medical Literature
Êhttp://cancerguide.org/research. html
ÊA nice and useful description of how to do research, including the above, and what to make of the different kinds of research you will find. This is part of Steve Duin's "CancerGuide" Web pages.
Êhttp://cure.medinfo.org/lists/cancer/bc-about.html
ÊMusa Mayer has provided a nice summary of the list, how it works, what is on it, etc.
Êhttp://cure.medinfo.org/cgi-bin/EZ-Commands/BREAST-CANCER/subscribe.html
ÊSuper-quick and simple way to subscribe to Breast Cancer List. Just fill out the form on this page!
Ê2. Breast-Cancer Discussion List -- Subscribing, Archive, Setting Options, etc. (MedInfo) (Gilles Frydman)
Êhttp://cure.medinf o.org/lists/cancer/index_sl.html
ÊThis is quite an amazing site for tricks and tips involving the Breast-Cancer mailing list. For the coolest tricks, click on "Interact with the List Server." This allows you to do such things as subscribe to the list, set subscription options (such as receiving the messages in "digest" form), view the archive of past messages, or even query the mailing list for a list of all subscribers, sorted somewhat as you want it
ÊThe NYSERNET "Breast Cancer Information Center," a site that I find to be clumsy to use. However, at least one Net-friend says that Netscape 3.0 has difficulty accessing the Archives for the "Breast-Cancer" Listserv through the previously listed site, and must use this, so here it is. Scroll down to the second page on your Web browser and click on "Listservs."
Êhttp://www.interlog.com/~davet/where.html
ÊWhere We Live -- Current Members of the Breast-Cancer List. City and state names, and human names, of some members of the B-C Mailing List.
Ê3. Some IRC (chatting) software
ÊHere you can pick up software for engaging in Internet Relay Chats (IRCs).
Ê4. #breast_cancer_friends (IRC Chat channel)
Êhttp://www.mirc.co.uk/servers.html
ÊThis link may get you into the chat. Don't know if it will work. When I figure out what exactly to include here, I'll provide the more specific link to the IRC chat channel at UC Davis called #breast_cancer_friends. But right now, my Netscape crashes every time I try to get into it!
Ê5. OncoChat
Êhttp://ng.netgate.net/~mwmi ller/onco.html
ÊThis is a Web gateway to a real-time, "online relay chat" (IRC) for people who want to type to each other about cancer without the delay of a mailing list. I like the MIDI music that plays when you visit this site! But although I downloaded the IRC software, I haven't got into a chat yet.
Ê"A $15 Medi-Net report lists where a doctor is licensed, the doctor's training, specialty, board certifications and other professional credentials. The report also will indicate whether the doctor has been disciplined in any state."
Ê2. AMA Physician Select (American Medical Association)
Êhttp://ama-assn.org/aps/amahg.html
This is a searchable database of doctors throughout the United States. It provides one way to get information on which doctors specialize in fields most relevant to breast cancer.
Ê3. Radiation Oncology
http://oncolink.upenn.edu/specialty/rad_onc/ Radation Oncology from Oncolink.
ÊLinks to various sites for radiation oncology.
Êhttp://pharminfo.com/drugdb/d b_mnu.html
ÊBrief information on drugs, by generic name or trade name.
Ê2. Drug & Toxicology Information (Univ. of Maryland)
Êhttp://www.itd.umd.edu/UMS/UMCP/MCK/GUIDES/drug.html
ÊNo links to online information, but description of books and databases, prepared by Univ. of Maryland staff.
Ê3. Search Physicians' GenRX
Êhttp://www.mosby.com/Mosby/PhyGenRX/index.html
ÊUsed to be a great way to get detailed drug information. Now moved and not yet in operation.
Ê4. Rx List
ÊSaid to have a powerful search engine. Produced nothing but names when I tried it.
Ê5. Medical News and Alerts (part of Doctor's Guide to Br. Cancer)
Êhttp://www.pslgroup.com /breastcancer.htm#News
ÊThis is a collection of press releases, one way of getting a plain-language (if biased or promotional) explanation of newly approved cancer treatments.
Ê6. Health News (HealthDirect)
Êhttp://www.healthdirect.com/usenew/news.shtml
ÊNew Drugs Approved, FDA Information, Reuters Health News, Press Releases.
Ê7. Drugs in Development (PhRMA)
Êhttp://www.phrma.org/webdb/help.htm
ÊDatabase of drugs being tested. But seems to have only two-year-old data!
ÊCANCER is the journal of the American Cancer Society. Until August 31, 1997, subscription is free.
ÊJOURNAL OF CLINICAL ONCOLOGY.
Êhttp://cancernet.nci.nih.gov/jnci/jncihome.htm
ÊJOURNAL OF THE NATIONAL CANCER INSTITUTE. Unfortunately, it looks like NCI has privatized access to the JNCI for 1997 and it does not seem to be available to us for free.
ÊNEW ENGLAND JOURNAL OF MEDICINE is one of the world's leading medical journals.
Êhttp://www.nejm.org/collections/breastcancer/TOC/1.htm
ÊNEJM's Breast Cancer Collection -- a collection of articles since 1992.
Êhttp://www.sciam.com/previousissues.html
ÊSCIENTIFIC AMERICAN.
Êhttp://www-radonc.stanford.edu/SocJourn.html
ÊLots more -- Stanford University's Department of Radiation Oncology has put together a big list of journal links (not limited to radiation oncology).
Êhttp://web.mit.edu/pamurra y/www/artbc.html
ÊThis is a brave and informative single-issue site, in which Patricia Murray shares with other women photographs to demystify what a mastectomy and subsequent reconstruction will actually look like.
Ê2. One Woman's Reconstruction (Nancy Delaney)
Êhttp://www1.mhv.net/~delaney/owr .htm
ÊAnother single-issue site, this one has Nancy's written journal, with many fewer photographs. You can follow along her continuing story, which is not yet completed.
Ê3. Under Options in Breast Reconstruction
Êhttp://www .roxane.com/Roxane/RPI/Newsletters/MDA/v9n4.html
ÊAs Nancy's pages say, this is "a relatively dense description of the options in breast reconstruction."
Ê4. Breast Reconstruction (Univ. of Iowa Plastic Surgery)
Êhttp://www.s urgery.uiowa.edu/surgery/plastic/brecon.html
ÊA simpler, easier-to-read overview of options. Just one page, though.
Ê5. Cancer Destroys, Cancer Builds (Stephanie Byram)
Êhttp://english-ww w.hss.cmu.edu/cultronix/stephanie/
ÊOne option is to reconstruct your life, but not your breasts. Stephanie presents a sensitive and poetic photo-and-words essay about her double mastectomy. She has not had reconstruction. Part of it: "MAGIC HANDS: These hands were the first to feel the lump. They carefully removed a few cells, then more tissue for my biopsies. These hands gave me the pathology report and comforted my pain, my loss. THESE HANDS SAVED MY LIFE."
Êhttp://www.wwfcanada.org/hormone-disruptors/index.html
ÊThis site concerns the issue raised in Dr. Theo Colburn's book, OUR STOLEN FUTURE, namely the effects of "environmental estrogens" or "hormone-disrupters" in our environment. One excerpt from this site: " Research based on over eleven thousand breast tumour specimens in the US, found an increase in estrogen-responsive breast cancers well as an increasing density of estrogen receptors within these tumours." Whether there are links to breast cancer-causation from chlorinated chemicals will be debated by some. This site provides a starting point for the materials of those who believe that there may be a link; regardless of that link, the other effects of hormone-disrupting chemicals are frightening enough.
Ê2. National Alliance of Breast Cancer Organizations (NABCO)
ÊSupport groups, fact sheets, clinical trials, and other information.
Ê3. National Breast Cancer Coalition
ÊThe content of this site is slimmer than it might be, but what is there is attractively presented, and its cause is crucial.
Ê4. Community Breast Health Project (CMHP, Stanford, California)
Êhttp://www-med2.Stanford.EDU/CBHP/
ÊThis site, maintained by Lauren Langford, has a wealth of information and links. It is run by a grassroots organization of breast-cancer survivors and others.
Ê5. National Action Plan on Breast Cancer
ÊThe NAPBC is coordinated by the PHS Office on Women's Health, Department of Health and Human Services.
Ê6. Matuschka
Êhttp://www.itp.tsoa.nyu.edu/~student/pincushion/FORUMHTML/cushion1.html
ÊThe artist Matuschka presents her COPYRIGHTED images, both photographs and other art forms (posters, etc.) The "Invasive Art" page is great.
Ê7. Life Quilt for Breast Cancer
Êhttp://www.nt.net/~giselef/life-qlt.htm
ÊCanadian Quilters'Association/ Association canadienne de la courtepointe, Life Quilt for Breast Cancer.
Ê8. Annette Friedman Campaign
Êhttp://darkwing.uoregon.edu/~jbonine/annette_friedman.html
ÊRead about the international campaign that tried to to help Florida lawyer Annette Friedman obtain the rare rhu-MAb anti-HER2 drug from Genentech Corp., and how activists are seeking better access to clinical trials for new breast cancer therapies.
http://www.patientcenters.com/breastcancer/
Musa Mayer has a new book, this one
for those with metastatic breast cancer:Ê Holding Tight,
ÊÊ Letting Go: Living with
Metastatic Breast Cancer.Ê Excerpts
from her book are here, plus other important resources.
2. Male Breast Cancer
Êhttp://interact.withus.com/in teract/mbc
ÊWhile breast cancer is commonly thought of as a female disease, it does strike men. This is the only site on the Internet devoted to breast cancer in males.
Ê3. "I've got Cancer but it Doesn't Have Me" Barbara Whipple Poetry
Êhttp://members.aol.com/curenow/private/index.html
ÊPowerful poetry by a breast cancer survivor. Thank goodness that AOL relaxed its old rule that blocked all information from its subscribers that used the word "breast"!
Ê4. Info Breast Cancer.
Êhttp://www.intranet.ca/~stancar/
ÊInfo Breast Cancer ("Stan and Carol's Web Site") has a good collection of categorized general links on BC information, a nice page on healthy eating, a good list of books to read, and other features.
Ê5. Some Recent Popular Periodicals.
Êhttp://www.sciam.com/0996issue/0996currentissue.html
ÊScientific American: "What You Need to Know About Cancer" (till 30 Sept.) -- The entire September 1996 special issue, "What You Need to Know About Cancer," in Web format, available only until September 30.
Êhttp://pathfinder.com/@@sa8zlQQAWyDevdeq/time/frontiers/acancer2.html
ÊTIME Magazine: Cancer: The Enemy Within (special issue, mid-September 1996.
Ê6. Corporate Angel Network (free jet flights for treatment)
Êhttp://www.mach2media.com/can/
ÊProvides free nationwide air transporation on corporate jets, to and from treatment centers, for cancer patients.
Êhttp://users.aol.com/cyberhugs2-- Dawn Bortnik's Page "Cyberhugs"
Êhttp://www.webwitch.com/top/survivor/ -- Fran Beslanwitch
Êhttp://cure.medinfo.org/tributes/KC_tribute.html -- Tribute to Karen Caviglia, Activist.
Êhttp://www.silcom.com/~noster/ -- Nancy Oster's Home Page.
Êhttp://www.interlog.com/~davet/where2.html -- Some Canadian Subscribers to the B-C List.
Êhttp://www.mtjeff.com/~bodenst/ - Carrie Bodensteiner's home page
Êhttp://www.intranet.ca/~stancar/ - Stan and Carol's Web Site
ÊJohn
ÊABBREVIATIONS used on the Breast-Cancer Mailing List
ÊMail message to:John E. Bonine (jbonine@oregon.uoregon.edu).
ÊBack to the top of this document.