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Cancer and Treatments > Childhood / Pediatric Cancers > Pediatric Cancer Resources
The purpose of this information guide is to help parents or children with cancer find information sources appropriate for their children. This list is not meant to be comprehensive, but rather to provide starting points for information seeking. The materials can be found at the Patient Education Resource Center of the University of Michigan Comprehensive Cancer Center located on the B1 level.
updated 2/07
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American Cancer Society
Overviews of specific cancer types and topics such as nutrition, coping with side-effects, support and practical
issues are offered in this site. Specific articles on coping with childhood cancer may be accessed through the
"Patients, Family & Friends" section of the site.
cancer.gov
This site contains PDQ statements -- peer-reviewed summaries on treatment of adult and pediatric cancer types, and
various supportive care topics. PDQ statements are updated monthly by oncology specialists. Also on this site is a
database of all cancer clinical trials.
Cancer BACUP
The British cancer information service offers news and information on specific cancer types and topics, and an
extensive Questions and Answers section offering detailed information written by cancer specialists and nurses.
Home Care Guide
A detailed, step-by-step guide for caring for young persons with cancer at home. The guide provides specific
instructions for treating and coping with various symptoms of childhood cancer treatment.
CureSearch.org
Provided by the National Childhood Cancer Foundation and the Children's Oncology Group this site includes information
for children and parents.
National Children's Cancer Society (N.C.C.S.)
Information about support services to children with cancer and their families. This site includes the full-text of
three educational publications: a coloring book for children ages K-3rd, a guidebook for survivors ages 15 to 24
and a guidebook for parents.
PED-ONC Resource Center
Created and maintained by parents of children with childhood cancer this site focuses on psychosocial and medical
issues as well as ways to connect with other parents of children with cancer.
ACOR – the Association of Cancer Online Resources
provides access to 143 disease-specific cancer email discussion groups. The ACOR site allows a user to search or
browse the archives of the lists.
Another listing of cancer related email groups (listservs) can be found on OncoLink:
- Go to: www.oncolink.com
- Click on: "Coping with Cancer"
- Click on: "Support"
- Click on: "Support Groups and Information Resources"
Blogs are online diaries published by users on the world wide web. Many blogs are written by cancer survivors
describing their experiences with the disease and its treatment. One must remember that the facts published on
blogs may sometimes be erroneous, and the personal experiences of the blogger may not always be relevant to the
reader. Information obtained from blogs should be carefully checked for accuracy and currency before making any
treatment decisions.
"The Internet is a wild frontier whose landscape changes frequently. It contains all sorts of health information
-— good and bad, true and false, complete and dangerously incomplete. Before you act on anything you learn online,
we recommend that you make sure you check with your doctor." --Consumer Reports
Anyone with a computer can set up a website! It is easier to publish information on the Internet than to publish
books, magazines and other traditional forms of communication.
Some sites on the Internet were created in order to promote a product or the opinion of the site’s creator;
therefore the information they present may be biased. It is important to weigh Internet information in the context of
the site creator’s motive.
In a similar manner to checking the credentials of a healthcare provider, it is necessary to check the credentials
of an Internet information provider. It is important to know if the information is provided by a health professional
or by a lay person.
If you obtain health information from sites other than the ones mentioned above, please be sure to
evaluate the information according to the following guidelines:
Sharing information you found on the Internet with your doctor
Cancer is a complex disease with many factors and variables that affect diagnosis, prognosis and treatment
decisions. Every cancer patient is a unique case with a different set of circumstances. Even if the information
you find on the Internet is accurate and current, it may not be applicable to your specific situation. To
understand how the information you find relates to your case, you must consult with your physician.
The following are suggestions to promote efficient and effective communication between you and your doctor:
1. Be organized.
Keep your printouts well-organized in a folder or in a set of labeled folders that
will allow you to find each piece quickly.
Prepare a list.
Review the information before the appointment and prepare a set of questions with the most important and
relevant ones first. Next to the questions record the information sources on which they are based.
These references will help you to pull out a specific piece if the doctor asks for it. Be realistic in
planning a reasonable number of questions within the time constraints of your appointment.
3. Keep a record of what was said.
It is difficult to maintain a conversation and take good notes at the same time. Bring a
friend or a family member who can take the notes. You may also ask for permission to tape the conversation.
This will help you to recall what was said in the meeting after it is over.
When searching for information on cancer, it is important to establish a good foundation of knowledge about the
disease, before focusing the search on treatment options. A good understanding of the disease and its specific
aspects such as: sub-typing, staging, tumor markers, etc. will help the information seeker retrieve more relevant
information and ask better questions.
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