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Vol.2, No. 3, April 2000


Welcome to the first spring of the new 
millennium, and a new focus for the CHRC 
News. Each issue will highlight quality 
consumer health information on the web. 
This issue will be devoted to a broad over-
view of cancer, spotlighting just a few 
excellent web sites.  Topics in upcoming 
issues will focus on exploring queries that 
the CHRC has received.  Please let us know 
what topics you?d like to see covered.


We hope the good weather will enable you 
to attend one of the upcoming CHRC/SLRS 
workshops listed below.  In May, the 
Massachusetts Board of Library Com-
missioners (MBLC) will be sponsoring 
workshops covering services offered by the 
CHRC and the Statewide Legal Reference 
Services (SLRS).  Based on some of the 
more unusual and thought-provoking 
queries received over the past year, the 
workshops will provide specialized 
information on print and electronic resources 
that may be best utilized to help answer your 
users? queries.  These refresher workshops 
will allow an opportunity for input into 
future services that may be provided by 
these statewide reference programs.  Library 
staff from any regional member library are 
welcome to attend on the date and location 
that is most convenient, regardless of which 
region your library belongs to. 


Mon., May 15,  1:00 p.m.?5:00 p.m.
Western Region HQ
58 Main Street
Please do not pre-register for this location.

Tues., May 16, 12:30 p.m.?4:30 p.m.
Lucius Beebe Memorial Library
Main Street
contact:  Susan Grabski


Wed., May 17, 9:00 a.m.-1:00 p.m.
Central Region HQ
8 Flagg Road
contact: Margaret Cardello


Thurs., May 18, 12:30 p.m.? 4:30 p.m.
Middleborough Public Library
102 North Main Street
contact:  Cheryl Bryan


Fri., May 19, 9:00 a.m. ? 1:00 p.m.
Metrowest HQ
135 Beaver Street
contact:  Barbara Andrews


Kate Kelly, CHRC Project Manager, looks 
forward to meeting many of you on Friday, 
April 28, at her 2:45 p.m. presentation, 
?Consumer Health Reference? during the 
Massachusetts Library Association meeting 
at the Sheraton Hyannis.  She will be 
focusing on electronic resources for 
consumer health services, with a brief 
introduction to collection development.


We are pleased to announce that a joint 
proposal submitted by Treadwell Library 
and the Massachusetts General Hospital 
Community Health Associates was one of 49 
electronic health information projects funded 
by the National Library of Medicine. This 
project will create a Health Resource Center, 
based in Revere that will serve Chelsea, 
Charlestown, Everett and Revere, and will 
provide online access to health care 
information.  MGH librarians and resource 
specialists from the Mass. Prevention Center 
in Boston will train outreach workers and 
other staff from the MGH Community 
Health Centers to assist local residents, 
community health care workers, and local 
organizations in accessing online health 
information via the Internet.  Another 
partner in the project is Chelsea?s 
Department of Public Health. For more 
information, go to: 
/ehip.html (NLM Press Release), and
l  (Health Information for Public Projects)


Many articles have been written about the 
problems inherent in finding quality medical 
literature on the web.  As an article entitled 
?Cancer and the Internet? by Donald Earl 
Henson, M. D., in the August 1, 1999 issue 
of the journal Cancer stated, ?On the 
Internet, there is no separation of peer-
reviewed, scientfically proven conclusions 
from anecdotal information or personal 
reflections.?  Another article in the same 
issue, ?Evaluation of Cancer Information on 
the Internet? by J. Sybil Biermann, M. D., et 
al., highlighted the pitfalls of using search 
engines to look for information about 
cancer.  The example chosen was Ewing 
sarcoma.  Its  variant spellings  -- Ewing, 
Ewings, or Ewing?s ? resulted in a plethora 
of possible sites, some of which offered 
blatant misinformation, and others of which 
only mentioned the diagnosis in passing.  
The following web sites will help provide 
consumers with quality information about 


There are a number of contenders for ?best 
cancer site.?   Arguably the most all-
encompassing, professionally written, yet 
accessible to the general public site is the 
University of Pennsylvania?s OncoLink. 
According to their home page, OncoLink 
was founded in 1994 to help cancer patients, 
families, health care professionals and the 
general public find accurate cancer-related 
information at no charge. It is updated every 
day, and is designed to make it easy for the 
general public to navigate through the pages. 
OncoLink provides comprehensive 
information about specific types of cancer, 
updates on cancer treatments and news 
about research advances.  

There is a wealth of information, but don?t 
let yourself be intimidated.  On the home 
page, you can connect to Disease Oriented 
Menus (written for the professional and the 
lay reader, in both English and Spanish); 
Medical Specialty Oriented Menus (for 
instance, radiation oncology or bone marrow 
transplantation); Psychosocial Support and 
Personal Experience (ways to cope; shared 
experiences); Cancer Causes, Screening, 
and Prevention (environmental, genetic, 
tobacco issues); Clinical Trials (with links 
to a variety of trials at governmental, 
organizational, and medical center sites); 
Financial Issues for Patients (billing, 
assistance programs); and more.  Also on its 
home page, OncoLink provides a link to 
book reviews on sixteen topics (to date), 
ranging from skin cancer to nutrition.  Under 
each topic, there are a half dozen or more 
substantive book and media reviews written 
by physicians and health care professionals. 
OncoLink will also highlight those books 
containing irresponsible advice which they 
do not recommend.  

Another way to find information in 
OncoLink is by taking advantage of their 
search engine, AltaVista.  Using the 
advanced mode, you can search either the 
entire OncoLink database or restrict to 
various areas, which consist of Frequently 
Asked Questions or FAQ (answered by 
OncoLink staff, usually a physician or 
nurse); Cancer News, Psychosocial 
Information, Citations from the National 
Library of Medicine?s CancerLit, or All 
Areas Except Citations.  The Advanced 
Mode is recommended because Boolean 
operators AND, OR, and NEAR can be 
used to good advantage.  As an example, try 
looking for information about pain as it 
relates to non-Hodgkin?s lymphoma.  (There 
are many different kinds of lymphoma, the 
type being determined by how the cells look 
microscopically.)  Translate the search into a 
statement like this: pain near non-
Hodgkin?s lymphoma. The advanced 
search mode in All Areas Except Citations 
yields (to date) five hits, some of which lead 
to more documents.  It should be noted that 
there are no results when it is spelled 
without the apostrophe or without the 
hyphen. Most notably, there are two FAQs 
about pain in non-Hodgkin?s lymphoma, and 
there is a ?Primary Document? on pain 
management, that links to a wide variety of 
carefully chosen organizational and  medical 
center resources.  


Worthy of brief mention is the site of the 
American Society of Clinical Oncology 
(ASCO), whose mission, according to their 
home page, is to promote the ?exchange of 
cancer-related information and news among 
the oncology community as well as the 
general public.? ASCO?s annual meeting is 
?the premier event in oncology, with leading 
specialists from around the world presenting 
the most recent advances in cancer 
prevention, treatment and research.?  The 
ASCO site has just begun to make itself  
more accessible to the consumer, and by 
going to the ASCO Shortcuts drop-down 
menu, and searching by disease, you can see 
breast, lung, prostate and colon cancers 
listed.  For each disease, links are available 
to guidelines, resources, news, clinical  
research,  and other categories.  This site 
will clearly be expanded and it appears as if 
it will eventually become a very useful site 
for consumers.

Lung Cancer 

There are a number of very high quality web 
sites devoted to cancer in specific parts of 
the body.  Lung Cancer Online is one such 
site.  It was founded by a librarian and lung 
cancer survivor, Karen Parles.  Coinciden- 
tally, this site can be used to illustrate all the 
virtues that you hope to find in a quality web 
site, ranging from currency and reliability of 
source information to statement of 
ownership. It loads very quickly, and there 
are no frames or graphics to clutter the 
screen.  Lung Cancer Online provides links 
to such important and technical sites as the 
University of Iowa?s Virtual Hospital, 
http://www.vh.org, for instance, which 
describes in extensive clinical detail a wide 
variety of both common and rare tumors of 
the lung.  Lung Cancer Online also links to 
easily understood sources such at the 
National Cancer Institute?s What You Need 
to Know About Lung Cancer, a booklet 
which includes line drawings and 
definitions, http://cancernet.nci.nih.gov. 

Breast Cancer

There are a number of highly reputable sites 
for breast cancer information.  One such site 
is a collaboration between the National 
Comprehensive Cancer Network (NCCN) 
and the American Cancer Society (ACS). .  
According to the site?s home page, this 
partnership is meant to ?provide patients and 
the general public with state-of-the-art 
cancer treatment information in 
understandable language. This information, 
based on the NCCN?s Clinical Practice 
Guidelines, is intended to assist you in the 
dialog with your physician.? The 
outstanding feature of this site is the 
Decision Tree section.  Click on Stage 0 
(LCIS, lobular carcinoma-in-situ), Stage 0 
(DCIS, ductal carcinoma-in-situ), Stage I 
and II, Stage III, Follow-up/Recurrence, or 
Stage IV.  You?ll be led, in logical 
progression, through a chain of ?interactive 
flow charts,? as they?re described, that 
represent different stages of breast cancer.  
Each decision tree shows how the patient 
and physician, working together, arrive at 
the choices needed to make a surgical, 
radiation, chemotherapeutic, or other, 
decision.  Every term is clearly defined.  It 
should be noted that male breast cancer is an 
entirely different disease from female breast 
cancer, and it is not covered in this web site.

Prostate Cancer

Prostate cancer is the second leading cause 
of cancer death in men, but by comparison 
with breast cancer, there are fewer quality 
web sites on the subject.  However, the 
American Cancer Society?s Man to Man: 
Prostate Cancer Patient Education and 
Support is a great starting place. The Man 
to Man concept began ten years ago in 
Florida with a prostate cancer survivor, 
James Mullen, who began a support group.  
Patient education materials are available at 
this site, covering topics from the PSA blood 
test to postoperative incontinence 
management; risk factors; links to other 
prostate cancer sites, and eleven (to date) 
issues of the Man to Man Newsletter, a 
quarterly electronic newsletter covering 
scientific topics in a readable way.  The 
current issue?s headlines include 
?Finasteride may not prevent prostate 
cancer?; ?Family history of breast cancer 
may increase risk of fatal prostate cancer?; 
?Focus on clinical trials? and ?You may 
have heard about shark cartilage.?
One link from this site, PSA Rising, was 
particularly impressive in content, if not in 
layout.  A pilot project in prostate cancer 
outreach sponsored by a Fort Lauderdale 
cancer foundation, at http://www.psa-
rising.com, this site is notable for a broad 
range of scientific news about new prostate 
cancer treatment.  PSA Rising also links to 
news releases from pharmaceutical 
companies, as well as a wide range of 
treatment options.   The goals of PSA Rising 
are clearly stated on their home page, and 
include, among others, alerting ?the 
medically underserved, especially African-
American men,? helping those newly 
diagnosed gather information, and 
conveying news about clinical trials and 
medical research.  The site has a search 
engine, and there is a prominent link to a 
Spanish language publication about prostate 
cancer from the American Cancer Society.  
It should be noted that other sites, like 
OncoLink, provide information in Spanish 
as well.

Brain Tumors

Though there are many extremely useful 
brain tumor sites sponsored by organizations 
and medical centers, offering news, support, 
glossaries, and treatment information, one of 
the most comprehensive and easily 
navigated is The Musella Foundation for 
Brain Tumor Research and Information.  
A 501(c)3 non-profit organization 
?dedicated to improving the quality of life 
and survival times for brain tumor patients,? 
according to its home page, the site began in 
1993.  The site?s Medical Advisory Board 
members (physicians from the New York-
New Jersey area) are prominently listed, as 
are disclaimers.  Although the ever-changing 
advertising banners (mostly from drug 
companies and medical institutions) can be 
distracting, the quality of information is 
superb and is updated constantly.  Some of 
the most useful topics covered include How 
to Find Brain Tumor Treatment (browse  
new listings or browse by brain tumor type) 
and Learn about Treatments for Brain 
Tumors  (news stories, conference 
information, survivor stories, glossary).  
There are also listings of support groups, 
contact information for specialists and 
hospitals (though this section is not 
comprehensive) and links to other brain 
tumor sites.  One feature which 
demonstrates the power of this site is the 
Search for a Specific Brain Tumor Trial 
or Treatment in the advanced search mode, 
which allows you to specify the following 
from drop-down menus: tumor type; 
treatment type; clinical trial phase; age 
group; and geographic location.  If you 
chose to look for chemotherapy trials of 
glioblastoma multiforme in Massachusetts,  
you?ll find six. The trials are listed by name, 
and clicking on ?Details? for the ?Phase I 
Dose Escalation Study of Gliadel in Adults 
with Recurrent Malignant Gliomas? informs 
you that this is a study for adults only who 
can care for most of their own needs.  It 
mentions other types of tumors, other than 
glioblastoma multiforme, that this trial will 
consider, and gives complete contact 
information.  In this case, the trial takes 
place at the Brain Tumor Center at MGH.

Though finding quality, current cancer 
information on the web can be challenging, 
it is also rewarding to both librarian and 
consumer.  As always, please don?t hesitate 
to contact us with any questions you may 


CHRC Contact Information

Tel: 1-877-MEDI-REF (1-877-633-4733)
 or    617-726-8600

Fax: 617-726-6784

or treadwellqanda@partners.org

Consumer Health Reference Center
Treadwell Library 
Bartlett Hall Extension 1 
Massachusetts General Hospital 
Boston, MA 02114.