Newly Diagnosed with Cancer: Finding Reliable Resources
Dr. Sam Lubner, medical oncologist, offers advice for individuals who may search the Internet for information about a diagnosis.
When patients are faced with a new diagnosis of cancer, the need for information is matched only by the number of different resources patients can turn to for advice.
We have resources at the UW Carbone Cancer Center to help patients including the uwhealth.org/cancer website, printed information available in the clinic waiting area and more in-depth information available by request. Our health care team can help patients understand how to use those resources and talk patients through some questions they might have.
A lot of patients forget what they want to ask or have questions that pop up after their clinic visits, so an easy-to-access online resource is often helpful. Your doctors are often involved in developing the content for these resources and would love to know you are accessing them. Feel free to ask!
Some really great online resources are out there, and they are pretty easy to remember. Each one has disease-specific information and recommendations and can send you to other sites that may have more in-depth information for any specific patient’s situation.
For more basic information such as – What is cancer? What are the guidelines for treatment?
American Society for Clinical Oncology (Cancer.net) – Website is well laid-out, user friendly interface, regularly updated.
National Cancer Institute (Cancer.gov) – Resource features information for both health care professionals and patients. A little more jargon-heavy than other sites, especially if the health care professionals’ information is accessed. This site has a searchable index of clinical trials in the area.
American Cancer Society (Cancer.org) – Website is a good source of statistics, advocacy and patient stories.
Up To Date (uptodate.com/contents/table-of-contents/patient-information/cancer) – Make sure to stick to "The Basics" for patient-centered information.
National Comprehensive Cancer Network (nccn.org) – Website includes in-depth information about a limited number of types of cancer.
For more local resources about support groups, etc.
Gilda's Club (gildasclubmadison.org)- This is a great resource for support groups, groups for family members, local events.
UW Carbone Cancer Center (uwhealth.org/cancer)- A way to research what is going on at the Carbone Cancer Center, read more about your doctor and potentially connect with other patients in the area.
A Few Things to Keep in Mind
- Always be a careful consumer of information and seek reputable, evidence-based resources.
- Be skeptical of any website asking for payment, personal contact information or selling "miracle cures they don’t want you to know about."
- Before you give out any personal information (contact information, cancer diagnosis), make sure you know and trust the source to whom you are giving that information. If you want them to contact you, give that information. If you don't, don't!!
- Before you buy anything, check with your team (doctor, nurse) to see if the UW Carbone Cancer Center has the resources available through the center.