The Internet is filled with unreliable health information and bogus claims. But sites dedicated to breast cancer information appear to have a high level of accuracy, a new study shows.
Texas researchers recently analyzed 343 Web pages, retrieved using search engines that consumers are likely to use when seeking information about breast cancer. The study, published online today in the medical journal Cancer, turned up 41 inaccurate statements on 18 of the Web sites, or an error rate of just 5.2 percent.
Previous studies of cancer-oriented Web sites have found a high prevalence of false or misleading information online, the authors noted. Although breast cancer Web sites have a surprisingly good track record for accuracy, the downside is that there is no reliable way for consumers to determine which sites contain accurate information, the researchers found. Web sites displaying complementary and alternative medicine were 15 times more likely to contain false or misleading health information than more conventional medical sites, the researchers said.
Dr. Funda Meric-Bernstam, associate professor of surgery at the University of Texas M. D. Anderson Cancer Center and the study’s senior author, said many of her patients clearly use the Internet to become knowledgeable about their condition before their first appointment with her.
“Often it’s clearly a benefit,” Dr. Meric-Bernstam said. “I’ve had patients who were recommended mastectomies that were really breast conservation candidates. They actually figured this out by going online and then seeking out surgeons capable of performing the surgery.”
But unfortunately, some patients stumble across inaccurate information. “There are times patients read about treatments that clearly do not apply to them, which can increase their level of anxiety or expectations for a treatment that they are not a candidate for,” she said.
Although online breast cancer information appears to be reliable, the best advice for patients is to check their research with a doctor before taking action.
One of my favorite Web sites is www.breastcancer.org, which was founded by Philadelphia-area oncologist Dr. Marissa Weiss. The site contains extensive information for breast cancer patients and their families. It regularly features breast cancer stories that are in the news, accompanied by commentary from a breastcancer.org doctor to help women make sense of the report.
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15 Comments
Oh, please. Basically, they know what they’re doing with surgery, but it’s a total crapshoot after that with all the drugs that are very profitable for both docs and industry. A drug to empty the female body of every last drop of estrogen? I don’t think so. A lot of the drugs are just clinical trials in process. I went through the whole thing and you wind up having to find your own way. I had plenty of bad docs — dishonest folks at Hopkins who wanted to use me for an experiment, plastic surgeons who didn’t refer me to where I needed to go because they didn’t want to lose my business, an MRI-crazy at George Washington who suggested two biopsies in a report that made absolutely no sense to two other doctors who reviewed it. My oncologist was sexually abusive. The web is very overwhelming–lots of conventional advice, and weirdo stuff it’s hard to know what to make of but has a grain of truth. Chemo has very little statistical benefit for most women, but most take it. (I did.) Check out Ralph Moss. Smoke marijuana during chemo to keep up your appetite and eat as well as you can, and advocate for the legalization of marijuana. And if you’re pre-menopausal, make sure to protect against bone loss during chemo and afterwards. And remember that spirit is number one. IMHO, the best thing that happened to me was I didn’t have to work through treatment nor for a long, long time afterwards — that gave me time to heal my body and spirit, and immune system, my way. Good luck, sisters.
— butterflysoupI have been through multiple surgeries, chemo and radiation, and am still alive, thanks to a wonderful and caring team of doctors. They follow the protocols as set forth by the National Cancer Center Network. Never was I abused nor recommended for any trial medications, nor did I use any illegal drugs to cope with the side effects of nausea. Breast cancer can be just as horrible as other types of cancer, but the right medical team can make all the difference in the world. Gulfcoast Oncologists in the St. Pete, Florida area are the best!
— Chrissy JacksonMost cancer websites include the latest medically promoted fads or reveal so-called secrets that physicians do not want you to know.
— healthinfoNone to my knowledge show the work of one of the few people who is a double Nobel Laureate, Otto Warburg, M.D., who in 1931 advised other researchers, including the many Nobel Laureates who attended a special luncheon to hear his talk to stop doing research on cancer since the cause and cure of cancer was already known.
Recently, a book, Cancer is not a Disease - It’s a Survival Mechanism, by Andreas Moritz looks at cancer in ways that the medical business does not and seems to build on Warburg’s work.
For more information about cancer, you may request a presentation made at the National Congress on the Un and Underinsured (Washington, D.C., December 11, 2007) by e-mailing healthinfo@delhitel.net. Please enter Presentation Request in the subject line and your name and phone number in the text section.
I have found this to be true. I came accross one particularly good website for both breasts cancer information as well as other GYN info (www.askmygyn.com) Its VERY easy to navigate through the wealth of information, and its all written by American trained and board certified obgyn’s. Its also reviewed and updated regularly. That makes me comfortable when looking for important information. Oh, in addition, we can even submit a specific question that will be answered within several hours by one of their obgyns! love it! This is what the internet is all about.
— Marsha FriedmanI was inspired by the seven-word wisdom contest last week to come up with a cure for “information angst,” which this study highlights:
Go online. Not too much. Mostly…
Mostly what? To those who have found wisdom online, what advice do you have for other e-patients?
— Susannah FoxI joined breastcancer.org shortly after I was diagnosed in 2003. I found the site very helpful but the participants were even better! It was helpful to read what someone had written explaining what would happen the first time I had chemo. Of course it was scary, but knowing a head of time what to expect helped me considerably.
I’m very sorry to hear that others had a horrible time of it. I had a great oncologist and radiation oncologist who were knowledgable and supportive.
And yes, I participated in a clinical trial. It was pretty straightforward - my tumor had a characteristic that the clinical trial drug worked directly on. And the drug was already approved for use but not for early breast cancer patients.
Good luck, sisters.
— SallyRemember that domains are important re: reliability and credibility of medical information. “.org” is better than “.com” (which ANYBODY can use), and “.edu” is a notch better because it shows that the information is from a credible source, such as a medical school, Medscape or something similar. Above those, you have “.gov” which will likely be information offered by the National Institutes of Health and/or the National Institute of Mental Health and links that those sites provide. At the top is “.mil” which indicates a military-related site (not likely to offer much medical information). There’s a lot of dangerous misinformation on the ‘Net and if you don’t know where to turn, ask a reference librarian, either at your local library or at a medical school library, which sites to view. If you know how to ferret out the bad stuff, that’s half the battle. (Look for sloppy Web sites, misspelled words, bad grammar, too many ads, dead links, sites that aren’t endorsed by or contributed to by doctors, or claims of some preposterous “cure”. I call those the “snake oil” sites). As a medical journalist, I do research all the time and I go back to the same sites over and over again. Good luck in your search - and, as you know, don’t rely solely on what you read on the ‘Net, no matter how professional it is. Keep your doctor “in the loop.”
— Rosa ClappNeither information about PREVENTION of breast cancer as an epidemic disease, nor mention of its considerations has to be found in sites on Internet or professional or mass media.
Breast cancer is not yet recognized as an epidemic disease, which may require special measures for its control or elimination, and is legally non-existent as such a threat in the country.
Immense information without information about breast cancer abounds in all sources, revolving almost exclusively around early detection, mammography screening, spurious risk factors and hence inaccurate risk assessments, and about all modalities of treatment, but not about potential for primary prevention. The breast-cancer advocacy organizations and groups added new urgency towards mass screening, cure, and more research on peripheral issues and objectives, such as diet and environmental toxic chemicals along with “awareness” and mentality of helplessness about the disease to women, couples and families, and the medical profession.
The present knowledge on breast cancer as an epidemic disease showed that the expected results – to determine the root causes of the disease and the rising incidence, and to define potential for primary prevention – have not been achieved by the concepts and theories presently prevailing in the field.
Etiology, besides prevention, is the least reported issue in the information avalanche about the breast cancer epidemic. The long-existing alternate, tested evidence of both the root cause of the current, excess breast cancer epidemic (the condomization of female sexuality in the mainstream population), and the potential of primary, sustainable and non-chemical prevention of the rare malignant epidemic disease is still buried under the self-righteous sites of the information superhighway.
Arne N. Gjorgov, M.D., Ph.D. (UNC-SPH, Chapel Hill, NC)
— Arne N. Gjorgov, MD, PhDAuthor of “Barrier Contraception and Breast Cancer,” 1980. x+164
Thank you for a really good article!
It is a pleasure to see the fence finally coming down, resulting in doctors ready for the next phase of the medical enterprise transformation towards fully patient-centered medicine. That is, after all, one of the 6 main recommendations of the Institute of Medicine Health Care Quality Initiative report “Crossing the Quality Chasm: A New Health System For The 21st Century”.
For now close to 14 years, while health professionals and public health officials keep on trying to figure out ways to save a broken healthcare system, over 300,000 cancer patients have benefited from communicating with large number of other informed and connected patients suffering from the same diseases. Most of these early e-patients can tell you that with a little help from other members of their online cancer community they have become informed and able to judge most of the scientific information necessary to have a real conversation with their clinicians. People diagnosed with cancer very rarely stay in a vacuum and often will find an online support group. Their interaction with peers has a real influence on their level of understanding ( see http://www.jmir.org/2008/1/e2 , “Impact of Web Searching and Social Feedback on Consumer Decision Making: A Prospective Online Experiment”) Here is a a quote: “There was an improvement in the percentage of correct answers after searching and after feedback with other subjects’ answers”.
Gilles Frydman
— Gilles FrydmanACOR.org
“information is Support”
Surprised no one has mentioned PubMed. Best thing to come out of the USA since Clint Eastwood started making films.
Best of all sources of information are Cochrane reviews of previous medical studies. Unfortunately, whilst many proposed Cochrane reviews are in the pipeline, it will be many years before most of them see the light of day. In the meantime, one has to do one’s own research using PubMed and then trying to do one’s own meta-analysis. Of course, a good oncologist should be doing this for you.
Finally, a word of caution about surgeons. A good surgeon is someone who is very skilled with their hands. It’s partly a talent - mostly experience. If possible, do not let a surgeon decide what is the best procedure for you. Instead, get the opinion of at least three oncologists who specialise in the type(s) of (breast) cancer you have - or most likely have. With their help and with the help of the peer-reviewed, published research (for which almost all the abstracts are to be found in PubMed) decide on the best surgical procedure for you.
When, and only when you have done that, to carry out your surgical operation try to find the most experienced surgeon in that particular procedure with the highest success rate and lowest complications rate. (Ask them what their success and complications rates are). Often the best surgeons are at medical schools and are widely published as well as currently practising surgeons.
— Chris Colenso-Dunneas per basic causes;;how about stressfilled life styles ?
— jimboIn response to commenter number 2, who felt compelled to debate and deny me (#1):
A critical factor, IMHO, is belief in whoever is treating you. If you believe in conventional care, and those administering it, it has a greater chance of working. If loads of conventional care worked for you, #2, that’s great. But just because you believe in it doesn’t mean it’s “right” for everyone.
I’m glad you weren’t abused in the course of your treatment. You were lucky. I would also hazard to guess that you weren’t in search of cutting-edge micro-surgical reconstruction involving a fat transfer from the buttocks, as I was, and eventually found at Mercy Hospital in Baltimore, which I highly recommend.
As for your remark, #2, about “illegal drugs,” I can only feel sorry for those who hesitate to smoke marijuana during cancer treatment.
I was alone during chemo, with no one to cook and food-shop for me, and it would have been very easy for me not to eat for days on end as I had utterly no appetite except when smoking marijuana.
IMHO, anyone who hesitates to use marijuana during chemo because it is an “illegal drug” is denying herself a great blessing from Mother Earth. It was only during chemo that I realized that marijuana is a medicine. When chemo ended, I stopped smoking.
For those who would like to learn about the medical benefits of marijuana, I suggest reading O’Shaughnessy’s, the Journal of Cannabis in Clinical Practice. Check out http://www.ccrmg.org and http://www.OShaughnessys.com.
God bless.
Butterflysoup
— butterflysoupI had one really great oncologist and one really awful one — they were in the same practice. The first one would brook no participation by me in my treatment plan and wanted to rush me into chemo so fast that I couldn’t even get a second opinion. Well, I did get a second opinion, and that second opinion changed my treatment plan in some significant ways, and that turned out to be a very good choice for me.
It has been absolutely crucial that I learn as much as I possibly can about the breast cancer I had. Yes, this means that sometimes I will read things that don’t really apply to me, but with a good oncologist, he or she will have the patience to explain this to you without getting annoyed that you’ve used more than one source for information (his or hers). It’s also very important to know as much as you can because most places, nurses will actually administer your chemo and actually have a lot of influence over all sorts of treatment issues. Where I was, it was a different nurse each time. I was the only person who truly always knew what was going on, and that was because I educated myself enough to understand what was going on.
Chemo isn’t the most important weapon against cancer. Neither is it radiation or surgery. It’s knowledge.
— Gail PerryYes, most blogs do get it right. However, we do live in a society where misinformation seems to be spread a lot quicker than the truth.
When it comes to breast cancer however, one must also wonder if the medical professions are getting it right. Look at what is happening in Newfoundland and Labrador right now with its breast cancer scandal. There is a major inquiry taking place where a cover-up is being investigated after over 1000 patients received the wrong diagnosis from their hormone receptor testing. It isn’t just about the blogs and articles getting it right, it is about the medical professions and the Government getting it right as well.
Now the Government of Newfoundland and Labrador is forced to have what has happened scrutinized in public through the inquiry as patients struggle.
Cameron
— Cameron Inquiryhttp://www.cameroninquiry.ca
Major health care issues are discussed on blogs and discussion boards more extensively than they could ever be discussed in academic articles.
The ability of readers to leave comments in an interactive format is probably the most important part of most blogs and discussion boards.
The interactive format allows rapid responses to medical and health care issues which frequently intertwine moral, ethical and legal concerns, and provides valuable feedback and commentary not available through traditional media.
Blogs and discussion boards are increasing the visibility of laypeople medical experts, who share tips about treatment and care giving from personal experience, and others have relied on them for straight talk about their health issues and bloggers often provide links to other blogs they favor.
As always, some cautiousness is needed on them because some bloggers can have a hidden agenda, like some of the main line medical and health care associations can have.
— gpawelski