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.
NOTE: 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.
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A 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).
2. Medical Housecall on the Net (Applied Medical Informatics, Inc.)
Apparently 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.
3. Breast Cancer for Patients (part of Pathology Simplified)
Simple, clear overview of breast cancer, including photos and diagrams (not only of cancer, but of the machines you will encounter!).
This 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!
This 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.)
2. CancerGuide: Steve Dunn's Cancer Information Page
Lots 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.
3. University of Pennsylvania's OncoLink
Kind 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.
4. National Cancer Institute Publications, incl. "PDQs" - Physician Statements - Breast Cancer
This 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.
This 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)
This 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.
There 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.
5. Health A-Z
Although 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.
6. Clinical Practice Guidelines
American 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.
7. Chemosensitivity/Chemoresistance Testing
I need to find one or two good Web sites for this issue, as it is rapidly growing.
8. Sentinel Node Biopsy
I need to find one or two good Web sites for this issue, as it is also rapidly growing.
9. Canadian/French Language Sources
Canadian Breast Cancer Network/Réseau 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.
10. What I've Omitted
I 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.
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!
This 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."
Health 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.
MedGate Medline Search. Also free; about the same as HealthGate to use, but requires you to remember your free account name and password.
Dr. 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.
2. For-Pay Medline Searches
Infotrieve. You need an account for this (a nearby university probably has one; perhaps its science library), but it is slick.
Paper Chase. Said to be easier to use, but costs $16 per hour. I personally have no problem using the free HealthGate service instead.
3. Yahoo: Multiple WWW Searches
Searching 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
A 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.
Musa Mayer has provided a nice summary of the list, how it works, what is on it, etc.
Super-quick and simple way to subscribe to Breast Cancer List. Just fill out the form on this page!
2. Breast-Cancer Discussion List -- Subscribing, Archive, Setting Options, etc. (MedInfo) (Gilles Frydman)
This 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
The 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."
Where 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.
3. Some IRC (chatting) software
Here you can pick up software for engaging in Internet Relay Chats (IRCs).
4. #breast_cancer_friends (IRC Chat channel)
This 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!
This 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.
"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."
2. AMA Physician Select (American Medical Association)
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.
3. Radiation Oncology
http://oncolink.upenn.edu/specialty/rad_onc/ Radation Oncology from Oncolink.
Links to various sites for radiation oncology.
Brief information on drugs, by generic name or trade name.
2. Drug & Toxicology Information (Univ. of Maryland)
No links to online information, but description of books and databases, prepared by Univ. of Maryland staff.
3. Search Physicians' GenRX
Used to be a great way to get detailed drug information. Now moved and not yet in operation.
4. Rx List
Said to have a powerful search engine. Produced nothing but names when I tried it.
5. Medical News and Alerts (part of Doctor's Guide to Br. Cancer)
This is a collection of press releases, one way of getting a plain-language (if biased or promotional) explanation of newly approved cancer treatments.
6. Health News (HealthDirect)
New Drugs Approved, FDA Information, Reuters Health News, Press Releases.
7. Drugs in Development (PhRMA)
Database of drugs being tested. But seems to have only two-year-old data!
CANCER is the journal of the American Cancer Society. Until August 31, 1997, subscription is free.
JOURNAL OF CLINICAL ONCOLOGY.
JOURNAL 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.
NEW ENGLAND JOURNAL OF MEDICINE is one of the world's leading medical journals.
NEJM's Breast Cancer Collection -- a collection of articles since 1992.
Lots more -- Stanford University's Department of Radiation Oncology has put together a big list of journal links (not limited to radiation oncology).
This 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.
2. One Woman's Reconstruction (Nancy Delaney)
Another 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.
3. Under Options in Breast Reconstruction
As Nancy's pages say, this is "a relatively dense description of the options in breast reconstruction."
4. Breast Reconstruction (Univ. of Iowa Plastic Surgery)
A simpler, easier-to-read overview of options. Just one page, though.
5. Cancer Destroys, Cancer Builds (Stephanie Byram)
One 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."
This 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.
2. National Alliance of Breast Cancer Organizations (NABCO)
Support groups, fact sheets, clinical trials, and other information.
3. National Breast Cancer Coalition
The content of this site is slimmer than it might be, but what is there is attractively presented, and its cause is crucial.
4. Community Breast Health Project (CMHP, Stanford, California)
This 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.
5. National Action Plan on Breast Cancer
The NAPBC is coordinated by the PHS Office on Women's Health, Department of Health and Human Services.
The artist Matuschka presents her COPYRIGHTED images, both photographs and other art forms (posters, etc.) The "Invasive Art" page is great.
7. Life Quilt for Breast Cancer
Canadian Quilters'Association/ Association canadienne de la courtepointe, Life Quilt for Breast Cancer.
8. Annette Friedman Campaign
Read 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.
Musa Mayer has a new book, this one
for those with metastatic breast cancer: Holding Tight,
Letting Go: Living with Metastatic Breast Cancer. Excerpts from her book are here, plus other important resources.
2. Male Breast Cancer
While 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.
3. "I've got Cancer but it Doesn't Have Me" Barbara Whipple Poetry
Powerful 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"!
4. Info Breast Cancer.
Info 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.
5. Some Recent Popular Periodicals.
Scientific 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.
TIME Magazine: Cancer: The Enemy Within (special issue, mid-September 1996.
6. Corporate Angel Network (free jet flights for treatment)
Provides free nationwide air transporation on corporate jets, to and from treatment centers, for cancer patients.
http://users.aol.com/cyberhugs2-- Dawn Bortnik's Page "Cyberhugs"
http://www.webwitch.com/top/survivor/ -- Fran Beslanwitch
http://cure.medinfo.org/tributes/KC_tribute.html -- Tribute to Karen Caviglia, Activist.
http://www.silcom.com/~noster/ -- Nancy Oster's Home Page.
http://www.interlog.com/~davet/where2.html -- Some Canadian Subscribers to the B-C List.
http://www.mtjeff.com/~bodenst/ - Carrie Bodensteiner's home page
http://www.intranet.ca/~stancar/ - Stan and Carol's Web Site
ABBREVIATIONS used on the Breast-Cancer Mailing List
Mail message to:John E. Bonine (firstname.lastname@example.org).
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