Research doctors, hospitals, and targeted cancer centers.
Seek an opinion from a sarcoma center or doctor who has considerable experience treating sarcoma cancers. Sarcoma can be very different from other cancers in how it responds to treatment. Therefore it is wise to seek the opinion of someone who is experienced in treating this specific form of cancer. Many well-qualified and highly seasoned oncologists have never had a patient with a diagnosis of sarcoma. Do not assume that your doctor knows sarcoma. Ask your doctor how many sarcoma patients s/he has treated throughout his/her practice and within the last year.
Research and Take Control of Your Sarcoma
Studies have shown that it is beneficial for patients to remain involved and proactive in their treatment. One way to be proactive is to learn as much as possible about sarcoma and, more specifically, to learn about the latest research being conducted concerning your particular sarcoma. The Internet is a wonderful tool in finding this kind of information, but at times it can be confusing and overwhelming. Also, one should be aware that there is a certain amount of inaccurate information on the Internet. Always keep that in mind and consider the source of the information you are reading, as there might be some bias to the content.
There are several sites that provide search tools that look for high quality, reliable medical articles on different cancers. Prior to beginning your search, it is helpful to identify keywords and alternatives to use in a search. Keep in mind that neoplasm and malignancy are just other terms for cancer, so perhaps use those words if you do not get search results using cancer or sarcoma. Search engines utilize Boolean logic (AND, OR, NOT) to refine searches. For instance, you might input “angiosarcoma AND chemotherapy” to further refine your desired search results. To help you get started, detailed below are several trustworthy sites that provide searches for abstracts and citations about cancer research.
National Library of Medicine
PubMed is a service of the U.S. National Library of Medicine and the National Institutes of Health; it includes over 24 million citations from MEDLINE and other life science journals for biomedical articles and dates back to 1948. PubMed includes links to full-text articles and other related resources.
PubMed’s tutorial is located at http://www.nlm.nih.gov/bsd/pubmed_tutorial/m1001.html. The tutorial provides a very helpful and thorough explanation of how to search for journal literature using this site. It explains how to limit your search for specific dates or languages and also discusses the site’s preview feature. This allows you to refine your search after you see how many entries appear.
National Cancer Institute
The National Cancer Institute’s website provides a search engine for its bibliographic database named Cancer Topics. This database is updated monthly and contains more than 1.8 million citations and abstracts from over 4,000 different sources, including biomedical journals, proceedings, books, reports, and doctoral theses. The search page for the database http://www.cancer.gov/cancertopics allows you to define your search by subject, publication type and/or year, and language.
Soft Tissue Sarcoma is one of the topics that has a prepared search page. Each edition of the prepared search includes only those citations new that month. The last six editions (the last six months) are included on the site. A section on soft tissue sarcoma can be found at: http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma.
Bone Cancers have a corresponding page. See: http://www.cancer.gov/cancertopics/types/bone. A section on bone cancers can be found at http://www.cancer.gov/cancertopics/factsheet/sites-types/bone.
NCI also offers telephone assistance at 1-800-4-CANCER (or 1-800-422-6237). Telephone assistance is available in English and Spanish to answer cancer-related questions, Monday through Friday, from 8:30 am to 8:00 pm Eastern Time.
The NCI’s website also offers live online assistance with its LiveHelp service at https://livehelp.cancer.gov/app/chat/chat_launch. NCI Information. Specialists on LiveHelp can give you information about cancer from the National Cancer Institute. However, they are not healthcare providers and do not provide medical advice. LiveHelp is not a substitute for talking with a healthcare professional. LiveHelp users are anonymous. LiveHelp is available from 8:00 am to 11:00 pm Eastern Time. If you prefer to contact them in Spanish, please visit http://www.cancer.gov/espanol/global/contactenos.
Medscape, now a part of WebMD, is a leading online destination used by physicians and other healthcare professionals for trusted, timely medical information that supports them at the point-of-care. Medscape offers free, unlimited access to a vast network of resources tailored to areas of specialization. These include in-depth medical news, CME/CE, full-text journal articles, conference coverage, peer-reviewed clinical research, expert commentary features, discussion forums, and more.
To access most of the information on this site, you will need to register; registration is free and only takes a minute. You may register as patient/consumer. Membership includes specialty-focused clinical newsletters and e-mail alerts on breaking news, plus selected information from the industry, tailored to areas of clinical practice from the WebMD Professional service.
Your search will create a Search Results page that has a citation for each relevant article. Clicking on the article title will allow you to view the abstract for that particular article. Above most of the abstracts are icons, which can be used to either purchase a hard copy of the complete article text or to view the text in full online.
You also can search Medscape’s DrugInfo database, which contains comprehensive drug information that is searchable by drug name or disease. Click on the “DrugInfo” tab.
The ACOR (http://www.acor.org/) website is specially designed to make searching the World Wide Web for information about sarcoma cancer faster and easier. The heart of ACOR is a large collection of cancer-related Internet mailing lists, which delivers over 1.5 million e-mail messages each week to subscribers across the globe. In addition to supporting the mailing lists, ACOR develops and hosts state-of-the-art Internet-based knowledge systems that enable people to find and use credible information relevant to their illnesses.
Rein in Sarcoma Foundation (RIS)
This Rein in Sarcoma website is designed to provide support and offer resources located not only here in the Upper Midwest, but across the country. You will learn more about sarcomas, courses of treatment, medical centers specializing in the treatment of sarcomas, and clinical trials, as well as about organizations and travel assistance.
Two major sections of the site located on RIS home page will be of great help.
From the “Sarcoma” Section on the home page, you will find:
- “What is Sarcoma?“—an introduction to sarcoma cancers
- Specific information on soft tissue and bone sarcomas
- An RIS Resource Section including
- Start Your Sarcoma Research
- Support Groups
- Clinical Research Studies—links to sites providing current information on sarcoma-related clinical trials
- Sarcoma Cancer Treatment Centers (nationwide)
- Cancer Treatment Centers (nationwide)
- Financial and Travel Assistance
- Coping with Sarcoma
- Resources for Care Givers
- Sarcoma Patient Support and Research Organizations (nationwide)
A section for Newly-Diagnosed Sarcoma Patients is also linked from the home page. Here you will find:
- Suggestions for newly-diagnosed sarcoma patients
- A special Internet feed section called “Current Sarcoma News”, which aggregates all the latest creditable information found on the Internet on sarcomas in general, as well as on specific types of sarcoma. This information changes very frequently so return to this location to stay up-to-date on the current information
- You also can order or download the latest copy of the RIS Sarcoma Patient Starter Notebook
Rein in Sarcoma Support Network Registration
Sign up on the website to receive additional information about the RIS, including support activities for sarcoma patients and loved ones. Or use the printed registration form found in Section VIII of the Notebook
Most Current Sarcoma Information
RIS provides a primary sarcoma aggregator of RSS feeds. This provides the latest news on many types of sarcomas and can be found on the Rein in Sarcoma website under “Current Sarcoma News”. RSS stands for Really Simple Syndication and is a technology used to simply publish and gather details of the very latest information on the Internet.
Be aware that through these general search engines, there will be little or no filtering of credible sites for sarcoma information.
Research – Anything!
This is a meta search engine search engine meaning that it gets results from multiple search engines and directories and then presents them combined to the user. Dogpile currently gets its results from Google, Yahoo, MSN Search, Ask , About, MIVA, LookSmart, and more.
Yahoo and GoodSearch
If you use the Yahoo search engine, you might consider using it through GoodSearch. GoodSearch.com is a new Yahoo-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate—including Rein in Sarcoma. Use it just as you would any search engine and watch the pennies add up! To learn more, go to:
And yes, there also is Google! – While Google has become the largest and most accepted universal search engine, the content of Google is not generally filtered for accuracy, timeliness, or access.
Hopefully you will find these sites, and the information that they contain, helpful in your search for relevant sarcoma research and information. Be certain to share and discuss your findings with your doctor and other members of your healthcare team.