Dr Google deserves more credit these days

Traveltext

I think the oft-repeated comment on posts here to keep away from Dr Google is no longer true.

Looking at the top 10 search results on Google.com for the term "breast cancer" delivers the results below. Above this list are always a few ads, including mostly a couple for our own breast cancer.org.

I'd suggest all these sites have lots of useful info on bc.

Then, on the second page of results you get sites from Komen, Mayo Clinic, and others that have more good info.

Even looking at results for terms such as "breast cancer treatment" and "breast cancer symptoms" delivers plenty of reliable information.

I know from being in the search engine marketing business from way back in the day, that medical search results up until five years ago were pretty bad, but Google now understands the importance of delivering apt medical search results.

Of course, the internet is full of bad advice, and you can find that on BCO at times, so always double check information.

GOOGLE RESULTS 2 July 2017

1.
Breast Cancer - American Cancer Society
https://www.cancer.org/cancer/breast-cancer.html
Get detailed information about breast cancer risks, causes, symptoms, treatments , and more from the American Cancer Society.

2.
Breastcancer.org - Breast Cancer Information and Awareness
www.breastcancer.org/
We are a 501(c) non-profit organization offering a complete resource for breast cancer, including up-to-date information on the latest treatments, screening tests, ...

3.
Breast Cancer: Causes, Symptoms and Treatments - Medical News ...
www.medicalnewstoday.com/articles/37136.php
May 5, 2016 - Breast cancer usually starts off in the inner lining of milk ducts or the lobules that supply them with milk. A malignant tumor can spread to other ...

4.
Breast Cancer—Patient Version - National Cancer Institute
https://www.cancer.gov/types/breast
Information about breast cancer treatment, prevention, genetics, causes, screening, clinical trials, research and statistics from the National Cancer Institute .

5.
WebMD Breast Cancer Center: Types, Symptoms, Causes, Genes ...
www.webmd.com/breast-cancer/default.htm
The five year survival rate of breast cancer is over 90% when caught early. Get in -depth breast cancer information here including symptoms.

6.
Breast Cancer | Breast Cancer Symptoms | MedlinePlus
https://medlineplus.gov › Health Topics
Breast cancer affects 1 in 8 women during their lives. Here's what you need to know about risk factors, symptoms, diagnosis, and treatment.

7.
Breast Cancer Causes, Symptoms, Stages, Treatment & Signs
www.medicinenet.com › ... › cancer a-z list › breast cancer (facts, stages) index
Get the facts on breast cancer awareness, signs, symptoms, stages, types, treatment, and survival rates. Statistics show that 40000 women in the U.S. die of ...

8.
Breast cancer - Wikipedia
https://en.wikipedia.org/wiki/Breast_cancer
Breast cancer is cancer that develops from breast tissue. Signs of breast cancer may include a lump in the breast, a change in breast shape, dimpling of the skin, ...

9.
Why Doctors Are Rethinking Breast-Cancer Treatment | Time.com
time.com/4057310/breast-cancer-overtreatment/
Not the sort of thing that usually comes out of the mouth of a woman who's just been diagnosed with breast cancer. For 20 minutes she'd been ...

10.
Our Feel-Good War on Breast Cancer - NYTimes.com
www.nytimes.com/2013/04/28/magazine/our-feel-good-....
Breast cancer in your breast doesn't kill you; the disease becomes deadly when it metastasizes, spreading to other organs or the bones.

MelissaDallas

The problem is not the sources, it is the reader. They seize on the least likely possibility and convince themselves that every pimple or athletes foot infection under their breast is IBC and every tiny lump, even at 20 must be stage IV cancer. I'm actually astounded how amazingly ignorant a big percentage of people are about their bodies and what comprises normal.

Artista928

I tell everyone I know with questions to check out this site.

Tappermom383

The best thing about Google is that is how I found BCO!

MJ

wrenn

I agree with Melissadallas. It is the reader who is not differentiating reliable info.

The same goes for people who read from this site. There is as much fear mongering here as in arandom google search.

Edited to add that like traveltext it bothers me to see how often newcomers are advised to avoid google. That to me is like saying that anything found by googling can't be trusted but info on Breast.org can

Artista928

The difference is on this site there is conversation. If someone is giving mis-information, it's corrected. Not so on google. That's huge.

MinusTwo

I read things from all of the sites Traveltext has posted from his google search. I find them mostly credible sites. However - I have learned a lot about breast cancer since 2011 when I was first diagnosed. Even before that I had a 25 year history of being called back every single year for 'more pictures' & an ultrasound. After 25 years, you have pretty much tamped down any worries. Besides, I am someone who likes knowledge. And not someone who panics.

I agree with the others that someone who has NO idea what to read and is already anxious will end up reading just the things that will feed the fear. I'm not sure what the answer is. It just is very disheartening to see so many new people posting here every single day with statements like "I'm sure I must have IBC". It is discouraging that very few of them think to call their docs, and many even after being diagnosed as B-9 do not believe their docs. It would be more sensible to get a second opinion than to do misdirected research.

Traveltext

Search Google for "inflammatory breast cancer" and you get an ad from BCO and a top result leading to BCO. Hence people come here, like I did over three years ago.

Then questions get asked in the forum and the rest is history: people here nearly every day with IBC questions. And I'm often surprised how curtly the questioners are dealt with here.

Freya244117

Traveltext, I have noticed that it is really only a few people who even respond to "Not dxd but worried" threads anymore. They are kind enough to give their time and advice, and it is unfortunately often totally ignored or thrown back in their face. I admire their patience.

To be frank, half the posts I read start with "I am a hypochondriac", or "I have always had health anxieties" etc, and then go on to talk about a pimple on their breast, or if I hold my arm at this angle, and twist my body this way, and in the right light, there is a dent etc. Another one is, I have had a mammo, ultrasound, MRI and seen 3 doctors, they all say there is nothing wrong, but I just know I have _____________ (insert whatever type of BC they have dxd themselves with).

My view is they are answered with kindness and honesty, not what they want to hear. Things only get "curt" as you put it, when they refuse to take good advice or keep coming back month after month for attention. Perhaps you should take over answering their questions rather than criticising the women who do.

Traveltext

Freya, I do answer lots of IBC questions here and I also understand the frustration of responders with many of the inquirers. And go look at the IBC Lounge for my activity.

I've also noticed that there are fewer responses to not dxd but worried posts. In fact, there's less responses to very many posts. I believe this is because there are a lot more forums and the rise of social media has drawn people away from BCO. And BCO have been too slow to make obvious changes here to compete. For instance, how hard would it be to put a like button on posts? know there are moves afoot to modernise this site and I look forward to a new, improved forum.

Artista928

I couldn't find a more active more in depth forum on bc than this one. I think people get tired of trying to calm down the not dx'd but worried folks because we are using our energies to help ourselves and others who have bc- it can get draining, at least for me. I think too that maybe the new folks don't realize that there's a lot of articles/info on this site. They find the discussion forums and seek help before reviewing the info from bco.

Traveltext

Yes, good point Artista. But I've noticed the BCO Google ads have the appropriate BCO articles as the landing page, so those searchers do get a chance to read something first.

Freya244117

Traveltext, I was perhaps a bit harsh, no sleep for 36 hrs. I just don't like to see those who do make the effort to help criticised. As I said, I admire their patience, I dont have it.

Artista, I would also like to see posting guidelines that suggest using the search function before posting. In one week there were 3 posts on what to expect from a core biopsy, the answers are going to be the same each time.

Artista928

The problem with the search function is just that, you'll come up with a zillion threads because every topic and probably thread title is in it. The search function is great for forums where you aren't allowed duplicate threads. You search first. If you find the thread on the topic, you post in it and not create a new one. But even for here the threads tend to be so long, pages and pages that who has the patience/time to sift through what maybe you are looking for is in it? I don't think there is a solution with such a busy forum like this. I know when I found this place I read the main page to get an idea of the basics and then just posted away. Much easier and faster, esp if you are freaking out and feel like you want/need answers now. I think in general we tend to forget just how anxious we were when we first were in the midst of finding out and then waiting for what seems like forever for the tx plan. I've noticed once the tx plan is known after the sx that those people are much more relaxed and post as such. So being I was in that boat I can't condemn seeing 3 posts on biopsy results in one day all with the same answers. What I've done when I've seen something like that is to post in one and copy and paste into the other one.

wrenn

I think some of the health anxiety posters are looking to be taken care of so searching for articles wouldn't work for that group. They want to be coddled and convinced that they should get second and third opinions and they get that here.

Traveltext

I just see a reply from a member to a young woman concerned about her diagnosis saying "Don't Google anything, everything you need is on this site" without a link to the Diagnosis page on BCO.

Perhaps the mods could post a comforting bit of text and include the link: http://www.breastcancer.org/symptoms/diagnosis

BCO is a labyrinth for newcomers and a few links included in postswould get newcomers straight to the info they require

Moderators

Thanks for the heads up Traveltext,

We'll reach out to her!

gb2115

When I suggest a new BCO member avoid Google, it's not really the misinformation on the internet, because there are a lot of reliable sites that immediately come up. For me it's the memory of intense anxiety that was needlessly fueled early on by Googling for the ultimate answer to my problem (the cancer). For some reason I thought that hours at the computer would fix it, and that's obviously not what happened. The best moments during that horrible time of waiting were when I detached from online and spent time doing other things, like I remember playing a board game with my husband the night after the biopsy (we totally knew it was cancer), and in the angst of waiting for MRI results we took a drive through the mountains and ate at our favorite restaurant. It helped tremendously to get offline.

So anyway, when I tell someone to not excessively internet search, that's where I am coming from. It's more sensing someone's anxiety and trying to help them rather than pronouncing the internet as evil. However I have also found that reading everyone else's worst case scenarios can also sometimes not help.

MTwoman

I agree with gb2115. As someone who does go to the "not diagnosed but worried" forum to answer questions as best I can, when I say please don't google, I mean for 2 reasons. The first is that when women google things like "red patch on breast" the first 5 results were breast cancer oriented. I'm not saying that the sites them selves were necessarily bad/erroneous (although they weren't all clear and informative), but that just the words red +patch+ breast immediately pulled up a page of breast cancer responses (except for the mayo site, which actually went through a very helpful list of various causes of red patches on breasts). So when people just put in random words (lump, dimple, etc) + breast they inevitably get breast cancer in response. Then, people who already have anxiety (either generalized or health related) have their worst fears "confirmed" and it takes quite a bit of testing and discussing etc before they can be convinced it isn't breast cancer.

The other reason I say please don't google is that focusing on and reading about bc, for those who are in the initial stage of having something in their breast imaged, heightens their fear and anxiety. As gb2115 indicated, distracting and doing enjoyable things while they wait for appointments or results (for the most part) leaves people feeling a bit better than 'all bc all day'. If they've been reading non-stop and worrying, it is much harder for them sometimes to actually hear, understand and believe their doc when the results are not bc.

Hopeful82014

A little bit off topic, but in regard to a couple of points raised above:

1) I came to BCO not via Google but at the recommendation of the nurse navigator who guided me through the dx mammogram/US/biopsy process. I probably wouldn't have trusted it w/out that vote of confidence on her part. I still remember how helpful the site was but we pretty much knew it was cancer from the get go. I also remember how shocking and hurtful it was when one member "corrected" me (erroneously) in a very curt and unnecessary fashion. Since that time I've frequently noticed members coming across rather brusquely to posters in a variety of situations. I cringe every time I see that. In some cases exasperation has definitely been in order. In many others, I think responders have forgotten what it feels like to be relatively new to a very frightening situation. I feel that we can do better.

2) Traveltext - I know that you (and perhaps others) think a 'like' button would be a great addition to this board. I feel completely opposite. This is NOT Facebook. It's not an 8th grade popularity contest and I would hate to see anything that introduces that element into this board. There's already a fair amount of cliquishness here that would only be encouraged, I believe, by like buttons. I also think it would considerably diminish the level of actual interaction and support; a sad face isn't nearly as personal or supportive as a written comment, either.

I'm stepping down off my soap box and returning the mic to those discussing Dr. Google's credentials.

Artista928

Hopeful- I agree with you on like buttons and such emoticons posted on posts on fb. There are emoticons here already which is fine. I would rather see words than emoticons or likes. There's already enough emotional posting here without adding such stuff to someone's post.

runor

I agree with Hopeful on the idea of a 'like' button. What a bad idea! As if voting for an opinion with a' like', somehow makes that statement true. Or more right. No way should there be like buttons. We are each allowed to state our case, share our story and people can like or not like it in the privacy of their own home, but there should be no public brownie point gathering. It tends to bring out the worst in people.

I have learned A LOT by reading on the internet. The trick is that you have to read between the lines. Studies reveal just as much information in what they DO NOT say as what they do say. It also helps to have a basic knowledge of statistics, and that you can't actually believe one until you know the method the researchers used to arrive at their numbers. Like my statistics prof said on day one, you can make a statistic say anything you want, they are not to be believed at face value. Many people are so terrified and looking for any shred of good news and hope that they do not read with a critical, questioning, skeptical eye.

Hopeful82014

runor, those are excellent points about reading between the lines and understanding statistics and trial design. Far too many just-diagnosed patients are in no position to critically assess the materials they're reading, due to lack of the tools or the psychic paralysis that seems to almost inevitably accompany diagnosis.

I don't recall if there's basic info on this site on how to approach/read/understand medical studies but, if not, that might be useful.

Traveltext

I've only come to understand the usefulness of a like button after spending time on a closed Facebook group page for men undergoing prostate cancer treatment. Rather than the button being used for popularity rating, it is used to denote agreement with a comment or a sentiment. It is an easy way of responding and a good way of gauging group consensus to treatment problem solutions. There's no malicious use of this function that I've noticed.

ChiSandy

Most of us here have gotten pretty sophisticated by virtue of our treatment experiences, so when something new crops up we employ our own instinctively accurate filters when we search. For instance, I first came here after my SNB incision popped and the seroma beneath it burst and leaked. (I Googled “exploding seroma” and a BCO thread came up on top). But by then, I had read the Dr. Love & Dr. Port breast books, visited the Komen and ACS sites, and been given a ream of printed handouts from both my health system’s breast and cancer centers. (I will admit that as soon as I got my first suspicious mammo report I did Google “focal asymmetry breast,” but it took me to a page on either Komen or ACS, and the next day—at my gyne’s request--my health system portal sent me links to the first spate of those handouts). When my PCP told me he was worried about my hemoglobin declining slowly into mild anemia, I did Google and was spooked at first to see links to articles saying it could be a harbinger of myeloid or other cancers two or three years later—but also that there were other reasons such as nutritional deficiencies or slow GI bleeds. I knew enough to prioritize the common-sense explanations over the scary ones.

But most people who come to the “Not Diagnosed But Worried” forum are medically unsophisticated—or have just enough knowledge to suspect the worst but not yet enough knowledge to ferret out the likeliest explanations from the potentially catastrophic scenarios (not all that different from second-year-med-student-hypochondria). They haven’t been able to apply their own Google filters yet—and Google doesn’t always discriminate between the accurate and the bogus, since it sorts strictly by popularity of searches. (And even WebMD and Livestrong have some wrong or prematurely worst-case-scenario info—without explaining the relative remoteness of certain possibilities). That’s why “don’t Google, stay here or go no further afield than Komen, ACS and the aforementioned Breast Bibles” is the best advice to those who’ve never navigated the minefield before.

wrenn

I have never thought of the 'like' function as a popularity thing. I think of it as a "yeah. me too" thing for those too lazy to type. I use it a lot.

Lucy55

i agree with Traveltext ..when I was in the process of being called back for additional test , waiting for results of the test etc , google became my friend ...I wanted to try and soak up as much knowledge as I possibly could before my doctor's appointments so I could understand what I was being told at my appointments ...Google actually gave me comfort .

I think lots of the people who come on to the not diagnosed but worried sections are after reassurance from us that it may not be cancer ..Of course it may not be cancer , but as we all know ..yes ..it may be ..We have no more idea than anyone else ..so a list of GOOD sites for them to read is a great idea to offer up .Once a Googler , always a Googler ..no one could stop me from googling ( even though Hubby tried 😃)

I am another one who would very much like to see a "like button '....I know this isn't Facebook etc , but so many people from these sites leave BCO and set up their own FB groups so they do have the extras like that ..times are changing ..a like button is just a way of saying.. I agree , I read your post , hi ...so many people here leave this site as well because they think their posts have been ignored ..when really it hasn't ..it's been read , but just missed being commeted on ..Other support forums have them , like Traveltext said ..I think it would be great if we could update and have it too.

Wrenn...just read your post ..Yes ! Exactly !

Traveltext

I'm like wrenn, sometimes too lazy, or busy, to make a comment, but really want to say: "spot on", "I'm thinking of you too", etc. Agree with Lucy55 that times are changing. BCO knows this and they are scrambling for a presence on FB and Twitter. I get both these feeds and, to date, there is virtually no public interaction with their posts. Likely interested people follow the links and end up here to try their luck with a question or concern. As L55 says, they often don't hang around even though they will mostly get responses if they do. BCO has been affected by the rise and rise of Facebook. There are lots of BC FB groups, often local in nature, which leads to more practical assistance and closer relationships. I'm on a local BC one, and people are very helpful and grateful for help. Much like here.

Since BCO have already announced a modernization of this site, I'd love an announcement from them and a call for more feedback. Likely, though, a change will just happen one day.

Traveltext

ChiSandy says: "Google doesn't always discriminate between the accurate and the bogus, since it sorts strictly by popularity of searches." Not so. Google's algorithms are ever more complex and site rankings are based on peer site approval, update of content, site load speed, time spent on the site, and another 100 factors. BCO hits the top for so many search terms because it ticks the most important boxes. So, "don't Google" might apply to the totally uninitiated, but you can't just say that to people you don't know the capabilities of, because when they want information, they'll keep going until they find it.

Artista928

Text- You're a guy. And fb is not like a message board like this. There are already "cliques" here. I've seen people "gang" up on someone but at least in text you can express yourself and explain why you agree with someone. If you like what someone said, how hard is it to type agree with so and so?

wrenn

Curious about "you're a guy" in this topic.