Using the Internet to Navigate the Cancer Journey
Content Advisory: This this page has been developed for adults living with cancer including patients, and non-patients supporting someone diagnosed with cancer. It has not been designed to meet the needs of health professionals or children. This page does not contain information about prognosis or other potentially distressing topics.
Page Summary: This page contains information about using the internet to navigate the cancer journey including some of the reasons people use it, what to expect, and suggestions that might help you use it better. This content may be helpful for individuals at any point in their cancer journey, but people at the start of their journey will likely find it more useful. The content was developed with input from the knowledge translation steering committee for the first CancerMaps research study.
Author: Dr. Maclean Thiessen MD MN FRCPC, Medical Oncologist, CancerCare Manitoba, Winnipeg, Manitoba
Contributors: Eleanor Benterud (survivor), Dawn Pickering (survivor), Don Betts, Alyson Shane
Why am I looking for information about cancer on the internet?
Searching for information is a normal response to a new stressful challenge.
Cancer brings many challenges and receiving a new diagnosis is just the beginning. Examples of some of the challenges that you may face following a diagnosis include those related to receiving cancer treatment, coping with loss of income, stresses on personal and professional relationships, and dealing with reduced life-expectancy and end-of-life. Information can help you with planning how to take on these challenges and in lessening their emotional impact.
Information from healthcare providers and the internet both play an important role for many people living with cancer.
Healthcare providers are often considered to be the best source of credible information. But the internet is just as an important of a source for many.
Unlike healthcare providers, the internet can be accessed anonymously, around the clock, and without an appointment. While some healthcare providers encourage the people they are caring for to stay off the internet, the internet is accessed everyday by people living with cancer who are trying to navigate their cancer journey. Research suggests that cancer patients' internet usage surpasses that of every other patient group.
What can I expect as I use the internet to help me navigate my cancer journey?
Online cancer content can be broadly divided into two types:
1. Webpage content.
Webpage content describes the type of pages that describe a concept or idea and are generally developed by an organization or company. The content is organized in a way that it appears to present facts, or statements, about the theme of the page.
2. Survivor generated content.
Survivor generated content is created by people who have been affected by cancer, including those who are currently living with a diagnosis as a patient or supporting a patient. This content reflects the lived experience of a specific individual at the moment they are creating it, including their opinions, what others have told them, or descriptions of what they have experienced.
Both types of content can be really helpful. Webpage content can be a great source of information, including expert knowledge. Survivor generated content can provide first hand knowledge from people that have been in your situation, including what they have done to thrive not just survive. But with either it can hard to understand whether it is credible, applicable to your specific circumstance, and sometimes the content can include information that is upsetting.
Using the internet to navigate the cancer journey gets easier with practice.
Especially at the beginning of your journey, when you are just starting to understand the new diagnosis and are facing the many other unexpected and unwanted challenges that come along with it, your internet searching may be unhelpful. Some people living with cancer have described their initial internet searching as resulting in a flood of information that is overwhelming, confusing, and just plain unhelpful. But there is hope.
As you become more oriented to both the challenges you are faced with, and how to use the internet, you will may find that the internet can be a powerful source of both information and personal connections that can make a difference for you and your loved ones.
What are some suggestions to help me use the internet to navigate my cancer journey?
The information that each person needs is unique making it impossible to say what strategies for using the internet will work for you. So while there will likely be some trial and error in your journey with the internet, the following recommendations from cancer survivors and healthcare professionals are a great place to start.
Cancer survivors suggest the following four steps to start finding your way online:
1. Find out how you fit in the world of cancer.
The internet is a big place and cancer is a huge and complicated topic. It's easy to get confused about what is relevant to you and what isn't. Knowing the following three things can help you identify what is relevant to you and stay away from what isn't. Your healthcare team is best suited to help you figure these out:
What is the type of cancer? Most cancers have a common name (i.e., breast cancer or leukemia) and this is important to know as you search for information. Additionally, additional details about the type of cancer like “histological” or “molecular” type may will help you understand what online information applies to you, and what doesn’t.
What is the intent of treatment? Sometimes cancer treatment is offered in an attempt to cure the cancer. Other times this isn’t the right approach and non-curative treatment is offered to try to control the growth and spread of the cancer as well as symptoms for as long as possible. While there is a lot of content online that can help people receiving treatment with either goal, this is not always the case. Understanding what approach is being used in your situation will help you better identify what internet content is relevant to you and avoid getting confused.
What is the cancers stage? Cancer diagnosis are often “staged” by healthcare professionals. The stage of a cancer predicts the probability of long-term survival and cure. The most common type of staging that is used in North America is known as the American Joint Committee on Cancer (AJCC) system, which stages cancers from stage 0 (non-invasive) to stage 4. Your healthcare team is best suited help you determine your stage. Importantly, stage is primarily helpful for understanding how cancer impacts large populations of patients - not an individual person. However, when it comes to internet content, knowing the stage can be helpful for understanding whether the content you are finding is relevant to you especially when reading stories or posts from people with a similar type of cancer.
2. Find your online community.
The internet isn’t just about webpages with written content. It can be a source of community, providing a place to share and connect with people either through email, videoconferences, discussion groups, and social media.
Whether you decide that you want to engage in these communities, knowing how to find them and what they can offer might be important to you, or someone in your life, now or in the future. Consider taking some time to explore what online communities exist and reflect on how they might be helpful to you or someone you care about.
To get started try typing the following into google search:
[your cancer type] facebook
[cancer type] community
3. Spend sometime looking for financial support.
Did you know that in many countries, including Canada and the U.S., a number of organizations exist that help individuals living with cancer cope with the financial burden? Some provide funding to help cover the cost of things like travel while others provide resources to help with things like getting disability or benefits for carers of cancer patients.
You might not need resources now, but setting aside some time to explore what is out there now might better prepare you for the future.
Try typing the following into google search:
financial support for [specify adult or pediatric] cancer patients in [your country – e.g., U.S. vs Canada]
4. Identify sources of general and specific information.
The internet is full of cancer related websites and content created with the intention of supporting patients and their friends and family. It is safe to say that most web content meant to help individuals living with cancer is tailored for either a very specific group of people living with cancer, such as those living with a specific condition, or the general population of individuals living with cancer. Finding a few examples of each type of content will help you know what is out there and find information quicker when you need it.
Consider taking a few minutes to try the following searches, see if you can find two sites with general cancer information and two sites that are a bit more tailored to your situation.
Use the following google searches to get you started:
For general content try:
Cancer [patient or caregiver] [include your country if you get a lot of results back]
To find more specific content try:
[cancer type] patient information [include your country if you get a lot of results back]
Healthcare Professionals Recommend:
Set specific objectives and times for online searching and do your best to stick to it.
It can be a common experience for anyone, living with cancer or not, to open up their smartphone or computer to quickly google a question that popped into their heads only to and find themselves aimlessly scrolling through webpages several hours later without any recollection of their original question. This is called “rabbit holing”. Rabbit holing’s evil cousin is “doom scrolling”. Doom scrolling can also take up hours of your time, but instead of jumping from hyperlink to hyperlink aimlessly looking for new and interesting topics, you find yourself seeking out worst case scenarios and surveilling the internet for potential threats.
Doom scrolling and rabbit holing are not going to help you deal with cancer challenges and live your best life. Rabbit holing steals time away from the other things in life that are important and doom scrolling will leave you terrified and on edge.
Try keeping the following things in mind to keep your internet searching from stealing time from the other important things in your life:
As questions come up write them down. Instead of performing the search in google right away keep a running list of things that you are wondering about – keep a small notebook with you or a list in your smartphone or on another device in a word processor or note app.
Set some thoughtful boundaries around your internet searching. Schedule a time in your day for your searching and try to stick to it. Pick a time that isn’t going to interfere with your other relationships or responsibilities or the other things that make your life better – like your hobbies and other self-care things like exercise.
Set a time limit on your search and prioritize your search questions. If you find your answer write it down, bookmark the page in your browser, and move on to the next high priority question in your list. When your searching time is up, make a note of the page you were on either by using a bookmark so you are ready to pick-up where you left off at your schedule time the next day. Then shut down your browser and move on with your day.
Try to stay focused on your search. In your time searching you are likely to come across new information that raises more questions. Don’t get distracted from your original question – instead write down new questions as they come up in your list and keep focusing on your original search until you find your answer.
Check the answers you find with multiple sources.
While some types of online information, like hours of operation of the cancer center or how to find parking, are usually accurate and easy to understand. For more complicated issues, like what expect with treatment, there are lots of reasons why online information doesn't meet your needs.
For questions where the answer is going to impact how you live your life having accurate answers is incredibly important. If you find yourself needing to use the internet to answer these big deal questions, keep searching the internet until you have come to the same conclusion from a few different sources of websites. Then, check your understanding with one another type of source of information - like your doctor, nurse, or therapist. If you are getting the same answer from each source you likely have an answer you can trust.
If after you have checked multiple sources you are not getting an answer you can trust ask yourself:
- Consider whether one of your sources is inaccurate?
- If you are misunderstanding the information you are receiving?
- If there is a better way to ask your question?
- If your question can even be answered?
Explore multiple types of information and support.
The internet is a great place to start searching for information because it is available when you are and you can look up anything that comes to mind in private fear of judgement from others. But the internet is not going to meet all of your informational needs needs. Sometimes resources like a support group of people that are going through a similar experience or a therapist might turn out to be a better source of support with problem solving and emotional support. Alternatively, some cancer centers have a patient educator or a librarian than can help connect you with credible sources of information.
Consider trying out a new source of information every month in addition to the internet. Even if what you find isn't helpful now, you might find a source that will be helpful to you or someone else down the road.
Content From Other Sources on This Topic:
A parent’s guide to health information on the Internet – From the Canadian Pediatric Society
Evaluation of Health Information on the Web - From Dalhousie University
Finding Cancer Information on the Internet - From the American Cancer Society
How Can I Get Help from a Real Person?
Your healthcare team, including you family physician, cancer specialists and any nurses involved in your care team are likely good people to talk to if you have concerns about your appointments. Additionally, many cancer centers have counsellors and other people who can help you navigate the many challenges of the cancer journey, but you may need to ask your cancer specialist how to contact these people. Proceed to your nearest emergency department or call an ambulance (911 in Canada and the United States) if you feel that you or a loved one is in danger.