We know that there is a lot of information out there -- and how hard it is to discern which sources are accurate. Some websites look like they could offer helpful advice, but are actually just for-profit entities trying to sell you on a product or service. Others are well-meaning, but often are contradictory to one another, medically inaccurate, or incomplete.
Not only is this experience frustrating, but it often contributes to patient and supporter anxiety about prognosis and treatment. Medically inaccurate sources also have the potential to give you bad advice that could harm your treatment outcomes.
As tempting as it is to consult Dr. Google, start with these 5 resources that come recommended by our Medical Review Board (“MRB”) as safe, medically approved places to research and learn about your diagnosis and treatment.
1. National Cancer Institute
Cancer.gov is the website for the National Cancer Institute (“NCI”), the federal government’s principal agency for cancer research, which is funded by Congress. The NCI is the largest funder of cancer research in the world, and manages a broad range of research, training, and information-sharing activities across the US.
Cancer.gov is meant to provide free, credible, and comprehensive information about cancer to the general public. As they explain on their website, the articles they provide are “science-based, authoritative, and up-to-date.”
If you’re looking for a source that breaks everything down by cancer type, it’s a great place to go. For every cancer type, they offer an overview of the illness, treatment types based on age and gender, causes and prevention, and advice for how to cope with cancer. Everything is broken down into layman’s terms so you can access the information you need to know, even without advanced medical terminology and knowledge.
2. American Society of Clinical Oncologist (ASCO)
The American Society of Clinical Oncologists (“ASCO”) is a diverse network of 45,000 oncology professionals across more than 150 countries. The organization is funded by the ASCO foundation which funds research and programs that improve the lives of people with cancer. ASCO believes that well-informed patients make the best advocates for their care, so they have created their website to help you become educated on your cancer diagnosis and treatment options.
At ASCO.org, you can peruse oncologist-approved information on specific types of cancer, articles on how to cope with cancer’s emotional terrain, and explore additional resources for finding new clinical trials. Although it’s less user-friendly than the National Cancer Institute, it does have important information in a number of different content formats including videos, “ask the doctor” sessions, and articles.
3. Radiation Therapy (RT) Answers
Created by members of the American Society of Radiation Oncology (”ASTRO”), Radiation Therapy Answers -- “RT Answers” for short -- aims to demystify radiation treatments for patients and their families. If you’re having surgery or chemotherapy, ask your doctor if they have other treatment specific recommended resources instead.
On the RT Answers site you’ll find answers about treatment types, potential side effects, and the latest in radiation related research, in addition to some great infographics that help explain concepts like a tumor board. In addition, you can also use the platform to find an affiliated radiation oncologist in your area if you need help finding a doctor.
4. Up To Date
UpToDate is a subscription-based service for patients, caregivers, and medical providers that offers evidence-based decision support for patients and clinicians. Used primarily by physicians it answers clinical questions in real-time and synthesizes information into treatment suggestions. Patients and caregivers can benefit from using it because it will help provide the tools and the confidence to ask the right questions and have meaningful conversations with your doctor.
While it’s more expensive and the least user-friendly design of the group, it can still be a valuable tool for patients that want to dive more deeply into their care on their own.
5. National Comprehensive Cancer Network
The National Comprehensive Cancer Network (“NCCN”) is a collaborative of many of the top cancer centers dedicated to providing information for cancer patients, including suggestions for free books that help you understand your diagnosis and virtual patient webinars. The goal of the organization is to positively impact the treatment of patients, even those with complex or rare cancers, through education and research.
Using the search function on the NCCN platform you can find information for your
specific cancer type, in addition to various webinars on topics of interest and resources for payment / reimbursement help.
The information here is for more advanced learners of cancer and cancer-related research. If you have hippopotomonstrosesquippedaliophobia, or phobia of large words, this might not be the right one to explore!
Whatever your questions are, there are resources to help you get the answers you need and lessen the anxiety that you’re facing with this new cancer diagnosis. As always, if you have specific questions about your unique situation, you should speak with your cancer care team about them.
