Sharon said:I am working on a setup for new sections of the Rare
Cancer Website. It will actually be five separate
websites. One for general rare cancer info, one for
support, one for news, one for adult rare cancers, and one
for pediatric cancers. I have been working my butt off
doing this, but I think it will help to divide it up, in
the long run.
In any event, I am trying to decide how to categorize rare
cancers. I have set up the test website exactly the way it
is classified in the Textbook of Uncommon Cancers, second
edition, Table of Contents. Here is my test URL: adult.rare-adult.rare-Open ↗
cancer.org/
The first menu selection "Listed By Type" is directly from
the Textbook. If you cannot read the menu, here is the
different types listed there: breast, cutaneous,
endocrine, gastrointestinal, genitourinary, gynecological,
head & neck, hematological, neurological, and thoracic. I
am not fond of this way of classifying. I prefer the
classification method that I have listed on my website
here rare-cancer.orgclass.htmIOpen ↗ . I need to
know, which method would be the most useful for the
patients looking for information for their rare cancer.
Could you, as patients, give me some input/suggestions?
I will (as you can see by the second menu section on adult.rare-adult.rare-Open ↗
cancer.org/) be authoring pages that will have page links
listed alphabetically. And of course, there will be a
complete indexing of the website so that patients can use
the search engine (at the top of each page) to find info
on their cancer also. So, no matter what, the information
will be easily found.
--
Take Care, Sharon Lane rare-cancer.orgrare-cancer.orgOpen ↗
cancerguide.orgrare cancer.htmlOpen ↗ The first thing
to consider is whether your cancer is really all that rare.
One of my doctors told me that kidney cancer was "rare". In
fact, it is not one of the more common cancers, and it would
be perfectly reasonable to call it rare, but tens of
thousands of people get my type of kidney cancer each year.
It turns out that there are dozens of clinical trials for
patients with kidney cancer and thousands of references in
the medical literature. There is no difficulty finding
information on this cancer. On the other hand, I once helped
someone with a "renal carcinoid" carcinoid" research his
disease. This cancer is truly rare with well less than 100
cases reported in the medical literature. If there is a PDQ
State of the Art Treatment Statement for your cancer in
Cancer.gov (cancer.govtreatmentOpen ↗)
, it is probably not truly rare.
If you have a rare cancer, the chances are pretty good that
your doctor has never treated even a single case of it, and
doesn't really know very much about
it. This means that the chances that you could gain a major
benefit by researching your cancer are much greater than
usual. So the first piece of advice is to research the
technical literature in detail.
Search the Medical Literature If the cancer is really very
rare, you may find very little about it in the usual online
sources such as Cancer.gov or OncoLink. The best strategy
in this case is to use MedLine to search the world's
medical literature. Even MedLine may have less information
than for most cancers. This may actually make the job of
searching easier since the usual problem is sorting through
an overwhelming amount of information. You may have to rely
on case reports and case series rather than extensive
clinical studies.
Find the Experts There may be an expert in your cancer
somewhere out there, so the second strategy is to try to
find such an expert. The best way to do this goes hand and
hand with searching the medical literature. Those who
publish papers on your cancer are some of the few doctors
who have actual experience. If you search the medical
literature you'll find out who these doctors are.
Keep in mind that not all authors of medical journal
articles are medical doctors, some are scientists or even
statisticians. Often doctors who don't normally see patients
like pathologists and diagnostic radiologists have their
names on papers. You want to contact a clinician - a doctor
who sees patients. It's often not clear who has what role
just from the abstract. If you get the full paper, either on
line or from a library you can usually figure out which
authors are clinicians. If you do get ahold of someone who
isn't a clinician - they can probably refer you to the
appropriate co-author.
Every reference you find in MedLine will have the names of
the authors and probably other important information which
will help you track them down, including:
The information in MedLine almost always includes the name
and location of the institution or hospital for at least one
author (and maybe more than one).
The e-mail address for one or more authors is often
included, especially for more recent articles. Once you have
this information there are several routes you can take to
get ahold of the doctor:
Virtually every hospital and research institute has a web
site. You can find the web site by searching for the name of
the institution with a web search engine like Google. If the
hospital name is very common like "St. Luke's" you may need
to add the name of the city in which it's located to narrow
down the search. You may also need to try variations on the
name like "St. Luke's" and "Saint Luke's". You'll often find
a directory with contact information on the insitution's web
site, but if not, there's always a phone number, so just
call them.
If you have the name of a US Doctor and the State in which
they practice (from the location in the MedLine abstract)
you can almost certainly find their contact information
through the American Medical Association's Doctor Finder.
The Cancer Information Service at 800-4-CANCER has a
physician directory and should be able to help. Maybe Your
Cancer is Similar to a More Common Cancer Your rare cancer
may be similar to a more common kind of cancer. If so, you
can learn a lot be researching the options for the more
common kind of cancer. For instance, one of the ways I
helped my friend with the renal carcinoid was to research
the much more common small bowel carcinoid. Another friend I
helped had a rather rare cancer called
peripheralneuroepithelioma. It turned out that this cancer
was usually treated similarly to a more common cancer called
Ewing's Sarcoma. So I was able to learn a lot by also
researching Ewing's Sarcoma.
Clinical Trials for Rare Cancers There are often few options
in clinical trials available for patients with a truly rare
cancer, because most clinical trials require patients to
have a particular kind of cancer. Phase I trials, on the
other hand, often accept patients with any kind of cancer,
as long as the cancer is advanced without any remaining good
treatment options. Unfortunately, phase I trials overall
have a very poor success rate. But there are exceptions, and
careful research might uncover a trial with some promise.
CancerGuide Info on Clinical Trials
Rare Cancer Websites and Organizations
rarediseases.orgrarediseases.orgOpen ↗ This isn't about websites for
specific rare cancers. I have links to some of those in my
Specific Cancers page. Instead, this section lists websites
which are about dealing with rare cancers in general.
The Rare Cancer Alliance rare-cancer.orgrare-cancer.orgOpen ↗ The
Rare Cancer Alliance appears to be the creation of a single
dedicated patient, Sharon Lane. It has extensive original
content. Much of it isn't really specific to the problem of
rare cancers but more applicable to cancer in general
- but then rare cancers are still cancers. After poking
around here you will leave you didn't have before. An
approach, a support groups, a web page, some
understanding... [Reviewed January 2004]
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Rare Disease Organizations These organizations cover all
rare diseases - not just cancer.
National Organization for Rare Disorders The National
Organization for Rare Disorders (NORD) maintains a database
on rare diseases including rare cancers. Their definition of
"rare" is pretty liberal, so cancers like kidney cancer,
that are less common, but not truly rare will also be
listed. On the other hand, there are so many rare conditions
that they don't have information on all of them. Their
database is searchable from the NORD Web Page.
Contact Info:
National Organization for Rare Disorders
rarediseases.orgrarediseases.orgOpen ↗ 55 Kenosia Avenue PO Box 1968
Danbury, CT 06813-1968
(800) 999-6673
(801) 744-0100
NIH Office of Rare Diseases
rarediseases.info.nih.govrarediseases.info.nih.govOpen ↗ The Office of Rare
Diseases is part of the US National Institutes of Health .
Like NORD, this covers many cancers which are not truly
rare, as well as many more which are. Their rare disease
list links to useful information from several databases for
each disease, and they have a contact phone number for more
personalized help. Definitely worth a visit.
OrphaNet orpha.netorpha.netOpen ↗ OrphaNet is an international
multilingual resource on rare diseases from France, with
information on a huge list of diseases. They've got
translations into at least five six different European
languages which is quite an accomplishment considering the
size of their site. The quality and usefulness of the
information varies considerably depending on the disease.
For one, I found a complete original review with references
to the medical literature, while for others, information is
mainly limited to links (which can be valuable). [Reviewed
January 2004]
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Rare Cancer Mailing List This e-mail discussion group is
specifically for patients dealing with a rare cancer.
Exactly how helps its members who presumably have a variety
of different rare cancers I'm not sure, but I bet that they
are used to helping people research their cancers.
To subscribe: Send a message to [email hidden]
Leave the subject blank, and set the first message line to:
subscribe RARE-CANCER your_first_name your_last_name
Or you can use the rare-cancer on-line sign-up form on the
Association of Cancer Online Resources (ACOR) website.
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This CancerGuide Page By Steve Dunn. Last Updated January
24, 2004 © Steve Dunn 1996-2004
