Learner's Lounge
Chin Up, Brain On—Let’s Learn This!
Let’s be honest here—there’s a lot to learn when you or a loved one receives a cancer diagnosis. And it’s not an insignificant amount of material to consume. Whether we want to better understand mutations, metastasis, immunotherapy, and cancer hallmarks, or side effects, treatment success rates, clinical trials, and liquid biopsies, our work is cut out for us. Making informed decisions about cancer care requires a deeper understanding of the entire cancer landscape—from diagnosis and staging to treatment selection, treatment response, and survivorship. However, it’s not necessary to be physicians or medical professionals to achieve this learning goal. One just needs to understand *enough* to be an engaged participant—on the offense and proactive—in their cancer care.
Learner's Lounge navigation guide & Study Tips
Learner's Lounge Navigation Guide
- There are more than 20 categories in the library below. Scroll through the entire list to acclimate yourself before making a selection.
- Some of these categories have additional subcategories within them, each with a dedicated page. If you get lost, use the Learner's Lounge as your home base.
- The Newly Diagnosed page serves as a "getting started" point and discusses choosing a doctor, evaluating treatment options, cancer journey roadmap, questions to ask, understanding diagnosis and prognosis, the importance of 2nd opinions, treatment guidelines, medical decision-making, talking to your children about your cancer, and more.
- The Cancer Biology page is where you can dive into some nerdy science stuff and better understand what is going on at a microscopic level: metastasis, angiogenesis, apoptosis, oncogenes, tumor suppressor genes, cancer stem cells, the Hallmarks of Cancer, differentiation, heterogeneity, biomarkers, and more.
- Nearly every page on this site has a dedicated resource section at the bottom of the page, specific to that topic. There is also a large resource directory (Resources) you can access through the navigation menu or at the end of the category list below.
- You can easily access the Learner's Lounge, Conventional Care, Integrative Care, and Resources at any time using the navigation menu at the top of every page.
- The Education Shop offers printable digital downloads for personal use on a variety of topics. These educational and organizational materials are custom-made by Oncology Offense, and the purchase of digital downloads helps support our site. We make every effort to keep prices as low as possible, but if you find them cost-prohibitive, please reach out to me directly at coral@oncologyoffense.com for assistance. In an effort to reduce bias and exclusivity with regard to our content, we do not accept sponsorships, advertisements, or funding from any third parties at this time. No AI was used in the creation of this site or its content with the exception of a few decorative images.
- If you're looking for individualized advocacy or navigation services, whether in-person or virtual, please check out our 1-on-1 Services page for more information.
Study Tips
- Choose one or two topics to start to build a foundation.
- Pace yourself. Fight the temptation to read scientific studies, open in 17 tabs, until the wee hours. Get the information you need and take a break. This is a marathon and the “I feel very well educated on my cancer” finish line is a ways away. That’s okay.
- Be critical about what you hear and read, especially if the claim/theory is not evidence-based.
- Ask any healthcare professional you engage with what resources they would recommend for further learning in their area of expertise.
- When reviewing medical literature, pay attention to whether the study was conducted in petri dishes in the lab (in vitro), in animal models (in vivo), or in clinical trials (humans). Human study results are more applicable to human health than in vitro or in vivo studies.
- Seek consensus in some manner. Can you find the same information in more than one (reputable) place? Does it seem widely accepted, relatively uncommon, or controversial? What do your doctors have to say about it? What do other patients have to say about it? Is there evidence or expertise to support the claim, recommendation, or statement? One person saying it is not enough.
- Discuss the information with others—family, friends, doctors, other patients. As you talk through different concepts and topics, you may come up with additional questions for deeper understanding, you may gain clarity, or you may discard/discredit/rework your original thoughts. Does it make sense when I say it out loud? What are the counterarguments? Are they credible? Should I explore further to make sure I really understand? Does something feel “off”?
- When reading about cancer therapy performance in studies, pay attention to the dates of publication/ posting. Things are changing rapidly so be sure what you’re reading is up-to-date. A few years can make a difference.
- Social media can be a good source of information and certainly offers the deepest and broadest access to patient perspectives and experiences, but you’ve got to do your due diligence in determining the legitimacy of what you read. Patient communities on social media can be great places to explore and discover topics and opinions that are usually discussed more privately. You can read patient stories, the challenges they faced, what they tried, what they experienced, what helped them, etc. Social media can also present new information that you can research in more depth later, and can alert you to cutting-edge or newly approved treatments (novel therapies) not yet included in standard-of-care guidelines.
- Keep a notebook so you can keep track of and reference what you’ve learned. It may also be helpful to create a “cancer education” email folder to organize any studies, articles, websites, etc. you email to yourself.
Select a category below to learn more
Cancer Biology
Radiology (Imaging/Scans)
Genetics & Mutations
Learn about metastasis, invasion, angiogenesis, apoptosis, cancer stem cells, the Hallmarks of Cancer, differentiation, heterogeneity, and more.
Genetics & Mutations
Radiology (Imaging/Scans)
Genetics & Mutations
Learn about hereditary cancer syndromes and mutations, oncogenes, tumor suppressor genes, DNA repair genes, somatic/tumor mutations, targetable mutations, genomic profiling, and more
Radiology (Imaging/Scans)
Radiology (Imaging/Scans)
Radiology (Imaging/Scans)
Learn about CT, MRI, PET scans, ultrasound, X-rays, understanding scan reports, imaging limitations, and more
Labs, Biomarkers & ctDNA
Labs, Biomarkers & ctDNA
Radiology (Imaging/Scans)
Learn about routine blood work, biomarkers & tumor markers, circulating tumor DNA, minimal residual disease, and more
Cancer Stage & Pathology
Labs, Biomarkers & ctDNA
Cancer Stage & Pathology
Learn about cancer staging, tumor grading, biopsies, pathology, and more
My Cancer Type
Labs, Biomarkers & ctDNA
Cancer Stage & Pathology
Learn details about your cancer type
Caregiver Support
Common Cancer Treatment Side Effects
Caregiver Support
What to do, how to get started, who/where to turn to for help, self-care, and more
Exercise & Cancer
Common Cancer Treatment Side Effects
Caregiver Support
Learn about the importance of movement and keeping your body strong
Common Cancer Treatment Side Effects
Common Cancer Treatment Side Effects
Common Cancer Treatment Side Effects
Nausea, vomiting, diarrhea, neuropathy, hair loss, fatigue, chemo brain, rashes and more
Cancer Screening & Prevention
Understanding Cancer Clinical Trials
Common Cancer Treatment Side Effects
Learn about cancer screening recommendations for breast, cervical, prostate, lung, and colorectal cancer
Understanding Cancer Clinical Trials
Understanding Cancer Clinical Trials
Understanding Cancer Clinical Trials
Learn what clinical trials are all about, how to find them, explore study participation & eligibility, and protections for trial participants
Understanding Scientific Studies
Understanding Cancer Clinical Trials
Understanding Cancer Clinical Trials
Learn about assessing the quality and reliability of scientific studies and medical news, deciphering study language, and more
Select a category below to learn more
Newly Diagnosed with Cancer
Community-Specific Cancer Care
Newly Diagnosed with Cancer
Evaluating Treatment Options, Cancer Navigation Roadmap, Questions to Ask, Understanding Diagnosis & Prognosis, 2nd Opinions, Treatment Guidelines, Medical Decision-Making, Talking to Your Children About Your Cancer and more
LGBTQIA+ Cancer Care
Community-Specific Cancer Care
Newly Diagnosed with Cancer
A focus on the unique needs of LGBTQIA+ cancer patients and their caregivers
Community-Specific Cancer Care
Community-Specific Cancer Care
Cost of Care: Insurance & Medical Expenses
Black/African American, Hispanic/Latinx, Native American/Indigenous/Alaska Native, Pacific Islander/Native Hawaiian, Asian American, Jewish, Adolescent & Young Adult
Cost of Care: Insurance & Medical Expenses
Cost of Care: Insurance & Medical Expenses
Cost of Care: Insurance & Medical Expenses
Health insurance, financial assistance, employment, patient rights, cancer-related laws, and more.
Care Team Options
Cost of Care: Insurance & Medical Expenses
Care Team Options
Learn more about all the different professionals who may be involved in your cancer care
Survivorship
Cost of Care: Insurance & Medical Expenses
Care Team Options
From diagnosis onward, you are a survivor. Learn about long-term and late-onset side effects, surveillance schedules, maintenance therapy, survivorship care plans, and more
Physician Perspectives
Conventional Cancer Care
Integrative Cancer Care
Read about how oncologists and other doctors felt & what they did when they or a loved one received a cancer diagnosis.
Integrative Cancer Care
Conventional Cancer Care
Integrative Cancer Care
Mental Health, Nutrition, Herbals, Supplements, Mind-Body, Ayurveda, Acupuncture, Massage, Off-Label Use, Medical Cannabis, Exercise, Spirituality
Conventional Cancer Care
Conventional Cancer Care
End-of-Life Care & Planning
Chemotherapy, Surgery, Radiation, Hormone Therapy, Targeted Therapy, Immunotherapy, Watchful Waiting
End-of-Life Care & Planning
End-of-Life Care & Planning
End-of-Life Care & Planning
Hospice, Advance Directives, Planning for end-of-life, Grief, Bereavement, Family Support, Memory Preservation
Glossary
End-of-Life Care & Planning
Resources
Access medical dictionaries, a plain language thesaurus, and topic-specific glossaries
Resources
End-of-Life Care & Planning
Resources
This will take you to the Digital Resource Library where you can access tailored resources for every topic covered on the site.
Taking A proactive, Empowered Approach to Your Cancer Care
As adults, we all make important decisions on topics in which we likely have no formal education or training. We don’t have to be industry experts to gather information to make informed decisions that work well for our lives. We wouldn’t shy away from hosting a holiday dinner because we didn’t go to culinary school, and we shouldn’t shy away from taking an active role in our cancer treatment because we didn’t go to medical school. We don’t need to know everything about cancer, medicine, or the nuances of the healthcare system to develop meaningful insights and opinions on the care we will receive. We are capable of learning what’s needed to navigate the road ahead with confidence and peace of mind. We can sift through what’s out there, pull out the relevant information we need, and combine it with our personal values and preferences to develop informed opinions. And when we sit down to speak with our doctors about next steps, we’ll be in a prime position to partner with them to make shared decisions, as opposed to waiting anxiously for them to provide us with instructions or chart the path forward for us.
Studies have shown enumerable benefits to approaching your cancer care in an active, informed, inquisitive manner. Here are some:
- Decreased patient anxiety
- Increased sense of control in the situation
- Better able to understand and remember information shared with them about their condition
- More realistic understanding of risks and expected treatment outcomes
- Increased overall knowledge
- Less likely to regret decisions they make about their cancer care
- More satisfied with the care they receive
- Increased sense of autonomy
- Increased confidence
A 2017 study by Krist, A. et al., touts the benefits as follows: "Patients who participate in their decisions report higher levels of satisfaction with their care; have increased knowledge about conditions, tests, and treatment; have more realistic expectations about benefits and harms; are more likely to adhere to screening, diagnostic, or treatment plans; have reduced decisional conflict and anxiety; are less likely to receive tests or procedures which may be unnecessary; and, in some cases, even have improved health outcomes."
Most oncologists don’t have the time or bandwidth to thoroughly educate each patient on the entirety of the cancer experience continuum, despite their best intentions. Expecting a single oncologist to serve as your sole source of information on all-things cancer can put an unrealistic burden on your oncologist and will likely leave you with more questions than answers. By expanding your “circle of influence” on cancer, self-educating, and self-advocating, you have an opportunity to steer your care and really wrap your brain around this beast. While the common suggestion to “avoid Google at all costs” is intended to prevent overwhelm and fear, it discounts a very real desire for people to learn and understand what’s happening to their bodies right now and what may happen in the future. Dismissive comments like “don’t worry about that right now,” “we can discuss that when the time comes,” or “don’t get bogged down by all that research,” not only fails to answer any question we had, but it can also come across as condescending. It feels a bit like a parental retort meant to shut a conversation down and urge compliance. “Because I said so.”
Learning about cancer and all that it entails is not about doubting or questioning your oncologist or the other healthcare professionals who care for you.
- It’s about augmenting and clarifying what’s been shared with you, so it makes sense to you. How does that work in the body? Is the toxicity worth the expected outcome? Why does it do that? Why won’t it work for my cancer? What therapies are out there for me? What do other cancer specialists think? Why are we running this test? What do the results mean? How likely is a recurrence? What percentage of people typically respond well to this treatment? How long will this treatment be effective? Why can’t I have surgery? Is that side effect common?
- It’s about demystifying the details that apply to you and your cancer. A quick, cursory overview is rarely sufficient to put a curious, engaged mind at ease.
- It’s about wanting real, honest information that has not been censored, softened, or sweetened. This is often done to protect emotions or preserve hope, but it restricts the patient from having full access to information that can directly impact their choices, outlook, and the reality of their situation.
- It's about being aware of, not an expert on, realistic treatment outcomes and risks, side effect profiles, types of tests and what the results mean, the potential emotional, financial, and psychosocial impacts of cancer/cancer treatment, and to whom and where you can turn when you need additional support or medical care.
- It’s about you—a person—seeking understanding and advocating for your health.
- It’s about maintaining autonomy and not handing the keys over to someone else.
- It’s about identifying and going after the best, most realistic outcomes for your cancer.
- It’s about understanding what the future may hold and giving yourself permission to plan ahead for possible scenarios, so you’re not caught off-guard or rushed to make decisions as your cancer and your treatment evolve.
- It's about having control over your health, treatment regimens, care team, and all medical decisions.
- It’s about feeling informed, confident, and empowered to make the best decisions possible for yourself, your family, and your life.
Your curiosity, interest in learning, and engagement in your care should be supported and encouraged, not stifled—it can be crucial to your health.
- According to the Centers for Disease Control, “A growing body of evidence shows that people with higher patient activation (i.e., the knowledge, skills, and confidence to become actively engaged in their health care) have better health outcomes.”
- The World Health Organization defines patient empowerment as, "a process through which people gain greater control over decisions and actions affecting their health."
- A 2023 study, The Impact of Patient-Centered Care on Cancer Patients’ QOC, Self-Efficacy, and Trust Towards Doctors: Analysis of a National Survey, in the Journal of Patient Experience stated, “Research has shown that involving cancer patients in treatment decisions can improve their QOC [quality of care], physical function, patient satisfaction, and quality of life.”
- A 2013 study, What the Evidence Shows About Patient Activation: Better Health Outcomes and Care Experiences; Fewer Data on Costs, in Health Affairs concluded, “The research shows that more activated patients have better health outcomes and better care experiences than patients who are less activated.” The paper also mentioned, “Less activated patients are also three times as likely to have unmet medical needs and twice as likely to delay medical care, compared with more activated patients. Highly activated patients are two or more times as likely as those with low activation levels to prepare questions for a visit to the doctor; to know about treatment guidelines for their condition; and to seek out health information, including comparisons of the quality of health care providers.”
Benefits for Involved Patients
"Patients who participate in their decisions report higher levels of satisfaction with their care; have increased knowledge about conditions, tests, and treatment; have more realistic expectations about benefits and harms; are more likely to adhere to screening, diagnostic, or treatment plans; have reduced decisional conflict and anxiety; are less likely to receive tests or procedures which may be unnecessary; and, in some cases, even have improved health outcomes."
-2017 Study, Engaging Patients in Decision-Making and Behavior Change to Promote Prevention
Trust in Doctors
"Patients who were given a chance to ask questions were significantly more likely to trust their doctors...
We also confirmed that effective communication between cancer patients and providers could significantly increase their participation in their healthcare. Finally, trust is defined as the patient's belief that doctors care for his best interests.
Research has shown that involving cancer patients in treatment decisions can improve their QOC [quality of care], physical function, patient satisfaction, and quality of life.”
-2023 Study, The Impact of Patient-Centered Care on Cancer Patients’ QOC, Self-Efficacy, and Trust Towards Doctors: Analysis of a National Survey, in the Journal of Patient Experience, 2023
Expert Patients
“E-patients include caregivers, those treated for cancer in remission, and patients actively undergoing treatment across all stages of the disease…
The term e-patients—patients equipped, enabled, empowered, and engaged in their own medical care—was first documented by Ferguson in 1996…expert patients are experts in their own experience as well as treatments and health care navigation—a natural extension of increased access to online information and patient communities, as well as self-advocacy.
They help move oncology forward as leaders in science communication, best practices, and research. Health care providers must be aware of the evolution of e-patients and see them as partners in their own care and in advancing a larger agenda toward individualized and holistic cancer care.”
-2022 review paper, The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator, in JCO Oncology Practice
