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Access To Medical Information
written and compiled by doctordee
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Access to Medical Information

Where does medical information come from?
Doctors are a wordy bunch. If they come across what they think might be new diseases or treatments, they write about their ideas in Medical Journals. If they think they have a new treatment for a disease, they also write about it. In addition, they create experiments to see if the proposed new treatment is any good. These experiments are called "clinical trials", and help determine whether the new treatments work to increase survival or change the course of the disease. The rules for conducting these experiments are strict.

How does a doctor find out how to treat a disease?
First, the doctor diagnoses the disease. Diagnosis is exceedingly important. The diagnosis determines the treatment options. When diseases are rare, it is important to make doubly sure that the diagnosis is correct. One does this by going for a second opinion to a doctor who specializes or who has a special interest in THAT particular rare disease. For a rare cancer, one would go for a second opinion to an oncologist who has a special interest in that rare cancer. For sarcomas, one would go to a sarcoma center or find a sarcoma oncologist and sarcoma pathologist. For other rare cancers, one finds a doctor who has a special interest in that particular rare cancer. It is exceedingly important to get the correct diagnosis. Go to the experts. For leiomyosarcoma, you want a sarcoma oncologist... an oncologist who works at a sarcoma center and sees at least 100 patients with sarcoma a year.

Once the disease is diagnosed correctly with an expert second opinion, then how do doctors find out how to treat the disease?

Medical Textbooks
Well, there will be information about treating diseases in medical textbooks. However, medical textbooks used to be 3 years out of date on the day they were published. The advent of computerization has cut down on this information lag, but it still exists. Medical textbooks do not usually deal in detail and depth in rare diseases. Rare cancers might only get a line or two or a paragraph or two.

The US National Institute of Health, National Cancer Institute, a major cancer information center
National Institute of Health

The US National Institute of Health has an enormous cancer site. On this site it has a PDQ section, Physicians Data Query, which is open to patients and health professionals both, and not only has information on treatment of cancers, but it ALSO maintains an extensive list of clinical trials that are going on, so that people can join them. The information at this site is updated frequently by experts, and usually within 6 months.
However, there may not be information, or enough information, at this site for rather rare cancers. site

Medical Oncologists with Special Interests
The subspecialist doctors, the sarcoma doctors, other rare cancer doctors, will be up to date on the latest results about experimental treatments in "their" rare cancers. They get the latest information from their own clinical trials, and those that are reported in the medical journals and at cancer conferences.

Medical Journals & Pubmed Searches
Cancer doctors often subscribe to several oncology journals, and may review others in the library or online. The National Institute of Health has sponsored an wonderful site, called Pubmed, which allows you to search most of the reputable medical journals in the WORLD for your subject of interest. Furthermore, besides giving you the journal citation [authors, institutions, journal, date, pages, title], it will also give you a summary of the article [called an ABSTRACT], if you click to request it. This will enable you to find out whether this article is worthwhile. Sometimes it is extremely worthwhile to go to a medical library and actually get copies of particularly important medical journal articles, or write/email to the authors for a reprint, if the full text of the article is not available online.

Why not just use a general medical oncologist?
Because of the many different kinds of rare cancers, a general medical oncologist will not have expertise in them, and will need to do research to find out the latest/best treatments. This takes time. The oncologist also has his regular breast, lung, colon, cancer patients to treat. The general oncologist may not have the TIME to look up and evaluate 150 to 300 articles on treating a rare cancer.
The general medical oncologist, who is usually locally available to the patient, would work best in referring rare cancer patients to specific experts, and then carrying out the expert recommendations for the patient geographically near home. There should be open communication between the general oncologist and the specialized oncologist, as sometimes the drugs used for rare cancers are themselves rarely used outside the specific cancer, and the general oncologist will not have experience in using them. Or not have experience in using them in the concentrations or combinations that might work for the cancer. They also might not be familiar with the particular side effects or allergic reactions that occur with new medicines. It is a good idea to have good communication between your local oncologist and your rare cancer oncologist, much further away.

Can I find out about the latest medical journal articles and discuss the information with my doctors?
YES. Often this seems very daunting at the beginning. But after some practice reading the medical journal abstracts, they become much easier to read. Some biochemistry might remain difficult, and certainly SOME authors seem to delight in being extraordinarily difficult to decipher, but you will be pleased at how it does become a lot easier and less mysterious as you get into it. It gives you a feeling of understanding more, and may help you to make better decisions. Sometimes, however, it is too scary to read. In that case, your caretaker might wish to do some of the research for you.

[Because I generally feel it is better to know and understand, and since most of my patients also feel that way, I have been the prime mover for this site and this page for you and your loved ones. If you feel at this time that psychologically you are not yet up for this, that's OK. Hugs and love to you, and pick a good sarcoma oncologist, an understanding psychologist, and the LMS list at ACOR to help you through the difficult patches. Message from doctordee]

See below about using Pubmed and searching the ASCO site,
as well as registering on Medscape's Oncology Section [for free, and you don't have to be a doctor]
-- you can get a free and very useful MedPulse Oncology Newsletter at this site.

How to Use PubMed

PubMed is a search engine... like Google or Yahoo...but MEDICAL.
Go to Pubmed
To use it, type in your search words like this:
leiomyosarcoma AND IVC AND outcome or
leiomyosarcoma AND uterine AND adjuvant AND survival or
"cancer families syndrome" or
leiomyosarcoma AND Doxil or
whatever search you want.
[I suggest you use different keywords if possible and run several different searches]
Then click on GO! Your search will materialize as titles. 20 to a page.

You want the Abstracts and the entire search on one page, if possible.
So click on the Number per page...and make it 500,
then click on the SUMMARIES dropdown menu, scroll upwards and click on ABSTRACTS.
Then click on the "Display" button.

[If you have more than 400 articles, you might wish to use "limits" .. click on limits. I suggest using "Human, Articles with Abstract, and All Adult" as first line limits. Then, click on GO! again...your articles should be much reduced in number.]

You now should have all of your abstracts on the page. Check that the page has completed loading. [The blue line at the bottom has come and gone, or that the number of the last entry is the same as the total number of articles listed on the previous page.]
Go to "File" on your toolbar, and click on "Save As"... choose the title of your search as the title, and save it as a text file... rather than html. [That's my preference. You might prefer the html file.]

Choose or create a folder to save it in [do NOT save files directly to the C drive]. If this is your first time...check in Windows Explorer or in My Computer that the file did save, and is more than 1 or 2 KB [click on View... then Details.]

You can now open the file offline in your own computer. If you have difficulty understanding the abstracts, go at them word-by-word, and then sentence-by-sentence. There is a list of glossaries, dictionaries, and like URLs just above this section. If you still have difficulty, bring your problems to the L-M-Sarcoma Mailing List at ACOR

I don't understand word ONE of the medical journal articles!

The major problem with the medical literature is the vocabulary.
For this, I recommend buying a good medical dictionary, however, there are online dictionaries and textbooks that help a LOT. And the more you read, the easier it gets, as I have been informed by MANY lay people.

The NIH dictionary aimed at lay people. Dictionary

On-line Science and Medical Dictionaries Dictionary

The Merck Manual
This is a classic, famous, reputable medical textbook, and it is completely available online. Merck

Medical and Pharmaceutical Acronyms and Abbreviations. Lexicon

MedLine Plus Medical Encyclopedia

Physicians Desk Reference
The PDR is essentially drug information. PDR

PubMed - Search of terms in Pubmed Online Books
Pubmed Online Books

There are online anatomy sites that can help, one of which is:
Anatomy -- Medline

another anatomy site is Grays Anatomy
GRAY'S Anatomy of the Human Body
(20th edition) featuring 1,247
vibrant engravings from the classic 1918 publication.

Online medical dictionary gives terms in the language of your choice.
Medical Dictionary for Foreign Languages

another online medical dictionary Dictionary

ACOR (Assoc of Cancer Online Resources)
Is a site with hundreds of separate mailing list discussion groups on rare cancers and other conditions. It even has a group CALLED the Rare Cancer group. Some of the health professionals on the L-M-Sarcoma mailing list can translate the medical terms for you. ACOR

A very useful site for searching almost anything is Ref Desk
It is basically a website with links to links.

The information on this site is not a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with your doctor. Please consult your doctor with any questions or concerns you may have regarding your condition. Copyright 2001-2010 LMSWEBSITE