Part of Serenity's Mission is to spend 10% of our time educating those who cannot afford our services. In addition to our blog, the list of resources here will help you understand your cancer, our complex healthcare system, how to expedite your care and/or how to avoid the financial risk that comes alongside a cancer diagnosis.
Resources That Require No Scientific Knowledge:
WebMD's Cancer Health Center: Read this first. It's a wonderful resource that's easy to understand.
Cancer.Net: This is the premiere resource for cancer patients, written in simple language by the American Society of Clinical Oncology. (Read this after WebMD as the content is slightly deeper).
National Cancer Institute: A part of the American Federal Government, the NCI sits underneath the National Institute of Health. This website also provides easy-to-understand information about cancer.
NCI's Cancer Dictionary: Do you need to know what macrophage, magnesium sulfate or magnetic resonance spectroscopic imaging means? Some definitions here will require you to look up other words in that definition. Nevertheless, it's a great resource for all of us.
Resources That Require Moderate Scientific Knowledge:
UpToDate: Beyond the Basics provides more detailed information for your cancer. It's a little difficult to navigate, but if you click on "Beyond the Basics" in the upper left hand corner, it will show a list of more detailed articles on your cancer. To find your cancer on this page, you can just scroll down until you see it. The faster option: hold down on Command + F (Mac) or Ctrl + F (PC) and type your cancer type in that search box. Do not use the regular search box, as it will show all the (complicated) resources that the doctors use.
Healthcare Triage: This will send you to a YouTube page that will help you understand how our health system works, how to interpret data and there are a few good cancer videos too! It's created by one of my favorite doctors, Aaron Carroll, MD. Although this isn't a cancer-specific initiative, if you're a caregiver or family member and are willing to watch every video in the Health, Health Policy and Research sections, your ability to help your loved one through this will dramatically increase.
ClinicalTrials.Gov: This is the searchable website that lists all of the clinical trials going on. It's helpful, but it's a maze. Find a YouTube video that teaches you how to search it. There are typically more than 70,000 clinical trials listed for cancer at any given time.
Resources That Require Advanced Scientific Knowledge:
Only Use These Websites If You Recall And Understand High School or College Biology:
NCCN Guidelines: When oncologists follow evidence-based medicine standards, these are the guidelines they typically use. It's a big advantage for cancer patients who understand these guidelines and can ask their doctor questions about them. It will require you to establish an account and log in but once you do the content is totally free.
PubMed: This site chronicles virtually every journal article ever published in the medical sciences. It's a particularly good resource for those with rare cancers. If you have not used it before, however, find a YouTube tutorial on how to use it. All abstracts (summaries) are free, but most of the articles will require you to purchase them. There is, however, a good chance that your local library can get the articles for you for free.
The Drive: This is a very advanced podcast about medicine and mental health, hosted by Dr. Peter Attia. Not every episode is focused on cancer, but those that are bring up loads of great information. True understanding of this podcast requires strong knowledge of organic chemistry, cell biology, genetics and physiology.
These Of Course Are Not Free, But They Do Not Require Any Scientific Knowledge:
The 10 Mistakes Every Patient Makes: This is written by the legendary Godmother of modern patient advocacy in the United States, Trisha Torrey. I attended one of Trisha's bootcamps and she is a wonderfully impressive human being. Think of this as a story-driven playbook for those who have the time to learn to navigate the system. While I disagree with the mild anti-physician tone of her book, I acknowledge that if I went on her cancer odyssey and had not professionally worked alongside doctors for thirteen years, I would feel the way she does too. Trisha also wrote The 10 Reasons You Need a Professional Patient Advocate By Your Side. It's just 80 pages, and it will provide perspective on why Serenity's 27 Services are so important.
The Health Care Handbook: Drs. Askin and Moore have written a more technical guide to our system. It's a story-less, data-filled onslaught of everything you might care to know about our system. It helps you understand the invisible incentives behind every aspect of our diseased system, which helps you fight it that much more effectively.
The Price We Pay: Written by a Johns Hopkins surgical oncologist, Dr. Marty Makary, this book surprisingly reads like an action thriller. It not only explains some of the economic mis-alignment behind healthcare financing, but it also provides some practical solutions.
The Emperor Of All Maladies: This is the Pulitzer-Prize-Winning book, written by Dr. Siddhartha Mukherjee, an oncologist turned cancer metabolism researcher. It's largely a historical account--or "biography" of sorts--of this wretched disease. It helps to de-personalize the disease in many ways. Many patients will walk away from the book hopeful and further empowered to fight their illness. It's also a three-part PBS special. If you're a patient who just wants the highlights, watching the special will be worthwhile.
Download and print a free Symptom Diary. A symptom diary is fairly straightforward. The left-hand column contains common symptoms you may be experiencing and additional space to add more as they occur. The top row has days of the week. Print out a new one every week and record what symptoms you have on what days. Your doctor will love you for it.