Use of the Internet
For many people, the internet has become the first place to go when looking for information. It gives you instant access to almost any topic you can think of. Today most households have computers, making internet access easy, quick, and convenient. There is an enormous volume of breast cancer information on the internet. Women facing breast cancer often use this information to make decisions about their illness and treatment.
Breast cancer patients can be considered pioneers of a new type of self-confident patients. Well informed patients often search the internet for assistance in selecting a specialist. (See Choosing Your Breast Surgeon :What to Consider) This brings to mind the old gag about which of the many specialized tests designed to help find at operation the often difficult to locate parathyroid glands in the neck is the best, the response being; ” the best way to locate the parathyroid glands is to locate a good parathyroid surgeon!”
The rates of health-related internet use by breast cancer patients reported in the literature vary between 10 and 44%. J Med Int Res, 2003. A 2002 study of breast cancer patients found that 41.5% used the internet for medical information. Increased income and educational level were significant predictors of internet use. Journal of Medical Internet Research, 2002. A 2006 study found that in those with access to the internet, health- related internet usage decreased with age, but increased with educational level. Journal of Public Health, 2006.
On many web sites you can find basic facts about certain types of cancer, locate the most current clinical trials, and find support in dealing with cancer. You may be able to get information on research articles, doctors and hospitals, cancer treatment guidelines, drug information, and complementary and alternative therapies.
Over the last few years there has been an explosion in internet sites providing information on cancer and related subjects. A vast majority of these sites are United States based and the information provided by these and other websites is of varying quality and accuracy. The sheer amount of information on the internet sometimes makes it difficult to find Australia specific information. As healthcare systems and treatments for cancer vary considerably across the globe, it is important that patients are able to access information that is not only reliable and accurate but is relevant to their own circumstances.
Unfortunately, there is a lot of bad information out there too. Some comes from well-meaning but misinformed people. There are also those who purposely try to deceive people. Always remember, not all information is good information. And bad information can hurt you when it comes to cancer.
The most reliable and trustworthy sources of health information tend to be government agencies, hospitals, universities, and major public health and health advocacy organizations. Look for well known organizations that have historically provided information for treatment and healthcare decision making. These groups have a particular interest in making sure that their websites are reliable and accurate and will often have the resources to keep them up-to-date.
If the site is full of advertisements or is supported or funded by an outside commercial company, it’s important to ask yourself whether the information there might be slanted in some way. This is not always the case, but it should make you more cautious.
Online Support Groups, Blogs, Discussion Forums and Chat Rooms
When looking for information and support, you may find online blogs or discussion forums where people post messages online. Some people may find online support groups helpful. It may be comforting to share your experiences with other people who are facing the same things you are. Online support groups are groups of people who share information and support over the internet through chat rooms, discussion boards, or mailing lists. These web sites allow people to connect with others like them who might otherwise be difficult to reach. They also allow a person to keep their real identity private if she chooses.
Some discussion forums or bulletin boards are only open to registered list members. Others are accessible to the general public. Blogs are where people post their story or views and invite other people to comment. Remember that anyone can post information online and it pays to be cautious about believing everything you read.
Below are some tips to consider when participating in online forums.
- Remember that everyone is different. Hearing from other women who have gone through treatment can be a great comfort and being in contact with them is a wonderful way of being supported. Just remember that what works for some women may not work as well for others. And naturally, people will have different views about what matters to them.
- Respect different views, experiences and interests. Advice and opinion from strangers online is not always gratefully received. Mutual respect is expected, especially in forums and blogs.
- Protect your privacy. Some online relationships, such as those developed on a support group website, may lead to meetings in person. The social norms around online communication are changing rapidly and a degree of caution in making personal details or photographs publicly available online is advised.
- Manage your registration and log-in. Some websites and online communication tools such as forums and blogs require registration. You might get more information in return for providing some personal details. Look at the site’s privacy and data usage policies before registering.
These places may not always be the best sources of health information, especially if they are not monitored by trained professionals or experts. Any information you get should be discussed with your health care team to see if it applies to your situation. The Cancer Council run an excellent service called Cancer Connections:
Breast Cancer Web Sites
The following are more specific examples of suggested cancer information web sites. These sources should only be used to get information. If you have a health-related problem, please see a doctor.
- National Breast and Ovarian Cancer Centre
- The Cancer Council Victoria
- Better Health Channel
- Breast Cancer Network Australia