"Dr" Google can be good

[boxhill]

I've noticed a constant refrain here advising the newly diagnosed to stay off Google, claiming that the information is often out of date and wrong.

Well, yes, sometimes it is.

But often it is not. A well-informed patient is an empowered patient, and moreover when doctors realize that you have educated yourself about your condition they are more likely to give you accurate information, rather than generalizations intended to reassure those who just want to be told what to do.

The thing you have to do, IMNSHO, is approach your google research with perspective and your rational mind in gear. If you consult wikipedia and ask about the survival stats for your condition, realize that those results are based on a cohort of people who were diagnosed and treated before immunotherapy and other current drugs were available. Simple common sense will tell you this. Don't panic. If you read articles from medical sources, look at the date first. (Not to mention the source. You can discard anything that is pushing some kind of non-science-based "natural" cure. Those people are right up there with anti-vaxxers.)

Steel yourself not to panic at every negative thing you read. Your reading and information you glean here and in other forums such as Colontown will help you find the right questions to ask your doctors and enable you to have constructive conversations with them.

If you just can't stand it, enlist a friend or family member to do research for you.

[Fluff Bottom]

I agree 100 percent! The more I understand my condition, upcoming tests, medical terminology etc, the better I feel. I like knowing what could happen and at least be mentally prepared for it.

It may not be right for everyone but I’m thankful for all the information out there, including this forum!

[Nordy1]

A well-informed patient is an empowered patient, and moreover when doctors realize that you have educated yourself about your condition they are more likely to give you accurate information, rather than generalizations intended to reassure those who just want to be told what to do.

.

I agree 100% with this, I read gov. studies and medical reviews trying to stay within the last couple of years although I will sometimes read older research to try and understand where the science came from. It helps me feel in control of the things I can control, which is my knowledge and understanding.

I also get great comfort from the signatures of the people here on this forum.
Nordy!

[O Stoma Mia]

boxhill -

Thank you for your post. One thing that can be mentioned is that web analytics show that a majority of the visits to the ColonTalk message board come via direct links from google.com. Alexa Analytics puts the percentage at 62.7%.

Upstream Sites
Which sites did people visit immediately before this site [coloncancersupport.colonclub.com]?

Site Percent of Unique Visits
1. google.com 62.7%

Reference: https://www.alexa.com/find-similar-sites#site=colonclub.com
https://www.easycounter.com/report/coloncancersupport.colonclub.com

What does this all mean? Well, for one thing, if it were not for Google, many of the "newly diagnosed members" would never have found this board in the first place -- or at least they would not have found it so quickly. If they had "stayed off Google" then they probably would not have found this place in a timely fashion.

If Google or other search engines were banned or were unavailable, then Colon Talk would have a rather difficult time attracting new members, I think.

The second reference above shows there is very little direct linking coming from Facebook or Twitter to ColonTalk.

[Lee]

I've noticed a constant refrain here advising the newly diagnosed to stay off Google, claiming that the information is often out of date and wrong.
.

That is probably me. I've been here a few years now, and I see a pattern. I see newbies who are 100% convinced they have colon cancer, thanks to Dr. Google, and are just waiting for official confirmation, via a doctor. They are scared, understandable, and want information. Usually they are fine, but until they get the confirmation from the doctor, I'm not sure if Dr. Google is where they should be learning information as yes, some of the information out there is wrong or out of date. I usually suggest hanging around here for answers.

Now if you have a confirmed diagnoses of colon cancer, that is a different story. Cancer is a crash course in learning medical terminology for most of us. This forum is a wealth of information and I believe a great starting point. Butt Google is also a good place for getting your information especially as you become more knowledgeable about your cancer.

Through the years, we've had a few interesting people here, who believed they could cure their cancer simply by supplements, eating an organic vegan diet or drinking this special expensive water, all thanks to Google. I know someone who died that way, stage 1, thanks to the info she got off the internet. Or recently, a guy who was convinced he had colon cancer, butt did not trust doctors to get a confirmation and thanks to the internet could slow the growth of his cancer simply by fasting.

There is a lot of good information out there, but there is also some pretty wacky stuff that will try to convince you it can cure your cancer better than the traditional/conventional way.

Lee

[zephyr]

Ditto what Lee said.

[boxhill]

Lee, in all of the time I've spent googling and reading about CRC I have never come across a site advocating fasting, peach pits, or whatever the latest nonsense is.

But then I'm not the type of person who googles "homeopathic cancer cures" or "curing cancer naturally" or whatever.

Many people with cancer report being bombarded with pseudo-scientific "natural cures" by friends, acquaintances, and even family. I was approached by someone who wanted to convince me to use essential oils instead of "taking the chemo route." I refrained from telling her sorry, I don't have a death wish. Luckily that was a one-time event.

There's an enormous amount of crap like that out there, and I tend to think that the people who are going to fall for it are most likely already prone to thinking that juice cleanses (or whatever) will cure everything up to and including cancer.

That is not a good reason to tell them to avoid research, IMHO. What they need to do is research intelligently. But then waiting to hear what the doctor says and taking it as gospel has never been my MO.

[KimT]

When anyone is diagnosed with cancer, I certainly think it is important to research. I certainly did.

I think it’s unwise for folks who have anxiety about their health or are hypochondriacs to consult dr google about their symptoms and convince themselves they have cancer. I have only ever advised these people to lay off dr google. It does them no favors,

[CRguy]

I will generally use Google / Google Scholar / Wikipedia ... as starting points for any reference researches.

Google per se as a search engine will simply take you to where the references are optimized and popularized ...
NOT necessarily to where the references are the most accurate ... sometimes quantity over quality
determining the BEST information for one's own situation is that individual's own job, IMO
and definitely where the ColonTalk forum comes in !!!!
WE can help to sort thru some of the "info overload rubble" to which we are all addicted.

1. I always keep an open mind ... just not SO open my brain falls out !

2. Always use your experts.

3. "You WILL miss more for not looking, than not knowing. "

4. Every sword has 2 edges ... one side directed away from you, the other towards you.

5. It is an inferior craftsman who blames his tools for a poor result.

6. When in doubt ... STOP
... take a deep breath
... refocus

7. Life IS what it IS ... BUTT may not always BE what it seems

Keep your focus on what you NEED, not what you WANT
Then, achieve what you NEED.

Back to the Dr. Google thing ... referring to the above numbered points

1. not everything on Google is worthy of keeping my brain from falling out !
2. it CAN be a great resource ... sometimes, IF used properly
3. It is probably the best for an initial "LOOK" I have found so far ... BUTT I never stop there !
4. You may look to get supportive info ... BUTT get nuked with negative stuff
5. Yin / Yang : IF you know how to use the tool = OK, If NOT = NOT OK
... Google is JUST A TOOL !
6. Too much info, especially if it is NOT good, is worse than too much info even if it MAY SEEM to be good.
7. Hopefully this point explains itself
if NOT ... THAT is exactly WHY the ColonTalk Forum is HERE

We always seem to be able to figure out the difference between .... SHIT FROM SHINOLA !!!!
(( In Honor of BevG who loved that phrase ))

Just IMO !
Keep asking the good questions and DO NOT STOP until you get the GREAT answer

Oh yes there is actually also a number 8

8. Given enough resources, anyone can find the right answer

BUTT ... The real GENIUS .. is in being able to ask the right QUESTION in the first place !!!!!

Cheers and Harmony to ALL on the Journey
CRguy

[O Stoma Mia]

When anyone is diagnosed with cancer, I certainly think it is important to research. I certainly did...

In my opinion, newly diagnosed persons should follow the advice found in Chapter 2 of the book mentioned below:

There is a book that covers many of the issues that you have brought up. Here is the reference:

After Shock: What to Do If the Doctor Gives You -- Or Someone You Love -- a Devastating Diagnosis " by Jessie Gruman

http://www.amazon.com/AfterShock-You---Love---Devastating-Diagnosis/dp/0802715028/

In Chapter 2, "Get Acquainted with Your Disease and Its Treatment", the author spends 18 pages telling why it is so important to gather as much information as possible about
.

1. Your Diagnosis -- the details of your full diagnosis, and ...
2. Your Treatment Options -- the details of all the treatment options that are available for your particular diagnosis.

This information is needed in order to understand the situation and to guarantee that you are in fact getting the best treatment for your particular situation.

There is a steep learning curve in the first few weeks, because you will have to get up to speed on all of these new topics in a very short time frame. It is in your best interest to spend the time necessary to accomplish these two important tasks before the time when the doctors make the decisions about your final treatment plan.

[stu]

Hi,
Clearly the majority on this thread are intelligent capable users of the internet and well aware of the pitfalls.

Not everyone is robust emotionally in the early days . Not everyone understands the difference between a self published article and research that has been subjected to clinical peer review and we have a situation over here where dated research is the foundation for making a decision to avoid rectal surgery . It’s not about “ pips” and alternatives which I think plays down the very real dangers for some people . Recently one person followed that advise only to find themselves with an inoperable recurrence. When their oncologist try to explain why they did not support it they are being advised that their oncologist is trying to prohibit them from getting this rectum saving surgery . Fight your oncologist and surgeons all the way was the message they given . We were able to point out guidelines for practice but that’s as big an influence we could have .
People are more than entitled to do whatever they like but advising to use reputable site when vulnerable is a gentle kindness .
I read everything from around the globe but filtering who you take your guidance from is only a reminder to be careful and easily dismissed.
I frequently refer people to places they can gain more knowledge on treatment options over here . That’s a wise thing to do but I totally get that caution being given is just safeguarding vulnerable people till they are strong enough to process information in a way that works for them . That’s a good thing in my books .
Stu

[Beckster]

Google is a good thing as long as you are using it correctly. When I was diagnosed, I researched my cancer online. However, I made sure that I used crediable sources to gain knowledge. Most of my information came from scientific research sites and Google Scholar. In addition, because I am an adjunct professor at a University with a Medical School, I was able to access the medical school library for articles. One thing that I did learn is that I can find articles that theorize a claim with evidence and another article will disprove it.

Beckster

[Lee]

Lee, in all of the time I've spent googling and reading about CRC I have never come across a site advocating fasting, peach pits, or whatever the latest nonsense is.
)

Okay You have a right to your opinion, butt here is mine.

I see that you were diagnosed at age 64, me, I was 46. That age difference can be a "life time". I had two small kids I had to raise 9 & 11. I'm coming up on 15 yrs survivorship and I'm still not as old as you when you were diagnosed. Again a life time of age difference!

Second, This forum was not here, I had to go blind and I was "actually" told by 2 different people to avoid the internet. One was an MD, the other was a good friend, who's dad died from this cancer. Why???? you ask, because the info out there said I would probably not live enough to see 50. When I was diagnosed, some info out there said I only had a 30% chance of being alive in 5 yrs. That is hard info to swallow. And no I was not looking at the "latest nonsense", just the hard core facts!!

FOFOX and Avaistan were experimental drugs back in 2004 only available for stage IV folks on trial bases. Lapro surgery was only available to stage 1 and maybe stage II folks, I was told I would be cut open simply because they were going to be looking for "metastasis" cancer and this was coming from a top notch board certified colon rectal surgeon in the Phoenix metro area. Believe me, a lot of advancements have been made since I was diagnosed.

I was able to get FOLFOX on a clinical trial bases simply because my Onc did her residence at Sloan Kettering Memorial hospital in NYC. For many months I was her "only" patient getting this chemo drug because the FDA had only approved it for stage IV cancer patients, I was stage III. I was selected for this clinical trial because of my youth and over all good health. The express goes my Onc threw the kitchen sink at me.

I beat the odds back than thanks to my Onc and surgeon who went above and beyond to get me through this. Also a wonderful network of family and friends. I am here today to help "others" who may be just starting their cancer journey. This forum and the AWESOME info and support it provides was not available when I was in active treatment. I wish it had been, I would have had a lot less sleepless nights. I remember this forum when the 2 co-founders were active members on this board.

I guess I'm an "old timer" around here. I try to help others based on my personal journey. Please step up to the plate and help others. Give them your expert advice. People come here scared, I get it, I was scared at one time also. Give them you experience, it just might help someone.

Lee

[AussieAssCancer]

So true! Reading articles from medical journals provided me with info to ask questions of each of my specialists along the way and generally, more often than not, they appreciated that I had taken the time to read up on treatment plans etc.