How to Find Accurate Breast Cancer Information on the Internet
A few years ago our daughter Sara called me. Diane, the mother of one of her friends, had just been diagnosed with inflammatory breast cancer, and Sara wanted to know if I would call and talk to her about my experience. Over the course of the next year Diane and I developed a phone and email friendship centered on her treatment concerns. When I suggested that she might want to join an internet support group for IBC patients, Diane demurred. Her doctor wanted her to stay off the internet.
This week one of the people asking questions about her recent cancer diagnosis expressed concern that her doctor might not like her researching her disease before she meets with him. Diane's doctor is not the only one I've heard about who discourages internet research about medical conditions, and our reader isn't the only one who wonders if her doctor will feel undermined by her reading.
So why would a doctor tell a woman to stay off the internet? Sometimes it may be because he is a condescending, arrogant so-and-so who doesn't credit women with the intelligence to educate themselves about their own bodies. However, more often the doctor probably has had bad experiences with patients who have been misled by inaccurate or incomplete information they read and misinterpreted.
I'm a strong proponent of medical self-education because it saved my life, but I will admit that sorting through all the types of information on the net is not easy and learning to read medical language is challenging. Like many doctors, I've seen women scared to death that they have inflammatory breast cancer because they Googled "itchy breast" and found out that itching is one symptom of a rare kind of breast cancer. Nevertheless, after the initial panic, most women find out they have a fungal infection or eczema, and the information they now have about IBC may help them or their friends in the future. So their internet research was ultimately more helpful than harmful.
Since you are reading this article, you must want to educate yourself about your medical condition, so here are some tips for finding pertinent and accurate information.
Choose your source wisely. Look for authoritative sources without as little bias as possible. When I research for articles for HealthCentral, I like to go to the American Cancer Society website or the patient information website for the American Society of Clinical Oncology for good background information. I also find websites from universities and medical research centers like Mayo Clinic have good information for people without medical training.
Websites like HealthCentral interpret research data for laypeople and often provide a question section. We offer the latest health news in one convenient place.
If you Google, you will probably also come across articles from medical journals. These have excellent medical information, but they can be difficult to read, and because research projects are usually narrowly focused, they rarely will give you the big picture that you need when you begin learning about a health topic. I recommend them after you have read more general information and have educated yourself about the basics of the disease you are studying.
Be wary of websites that have a "one-cause" tone. Cancer is a complicated medical condition, but some bloggers will try to convince you that cancer is caused by X, Y, or Z. These websites often have the perfect remedy that they are eager to sell you for $99.99. Sometimes they want you to come to their unaccredited treatment center for expensive treatments that are not FDA approved.
Read with care. Start by noting the date of the information. Things change fast in the cancer world. If sources seem to contradict each other, the newer one may be more accurate.
Consider the credentials of the people writing the information. At HealthCentral you will find information from doctors, patient experts, and site readers. PJ Hamel and I are the current patient experts at HealthCentral Breast Cancer, but if you read back through our archives you will find many more. Patient experts are people who have had the health problem and educated themselves about the condition. As patient experts, we double check facts and explain medical information as we best understand it, but we are not doctors. As people who have experienced breast cancer first hand, we bridge the gap between your doctor's knowledge about breast cancer diagnosis and treatment and your worries that your doctor is not taking your lump seriously enough. We have sat in the patient's chair, and we have read enough patient stories and medical journals over the years to have an intuitive sense of whether it might be time to push for a biopsy or watch and wait.
At HealthCentral and many other health websites, you can also read tips from other readers. Be aware that you are reading one person's interpretation of what her doctor told her. Her experience may not apply to yours. People also use this website to provide links to their blogs or product sales websites. Because many of these offer valuable products, HealthCentral leaves them up; however, the presence of a link to a book or product on the website is not an endorsement. People have many opinions about cancer, and we want the website to provide a place to express them, but pay attention to the experience and training of the writer.
As you read, notice words like "may" and "sometimes". It's easy to get scared about side effects from a drug that occur only rarely. Look up medical terms as you go.
Do not self-diagnose. No website can substitute for your doctor's diagnosis. When you go to the doctor, describe your symptoms and wait to see what the doctor says. Your reading articles about breast lumps here at HealthCentral or another site is going to help you know what is important, so that you can concisely describe the problem: "I've had a hard lump for three months that seems to be getting larger."
Wait to see what the doctor says. She may be able to tell by the size, shape and texture that your lump is most likely not cancer, but you will know enough to ask for imaging tests to be sure.
You do not need to hide your research. It shows that you are an educated health consumer. Just be tactful about sharing what you know. "I've read about the different kinds of breast lumps, so I know that at my age it is more likely to be a fibroadenoma, but I'm still worried that it might be cancer. How can we be sure?"
Ask the doctor's opinion about a new treatment you've read about rather than telling him that you want a prescription for a medicine that might not be right for you.
If you use the knowledge you gain from reading about your symptoms to help you know when to call the doctor and to give you enough information to ask intelligent questions, your physician will be glad you did your research.