Topic: Things to know about Dr. Google. Number 75 will shock you !!

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Mar 26, 2019 09:22AM - edited Mar 29, 2019 01:23PM by djmammo

Posted on: Mar 26, 2019 09:22AM - edited Mar 29, 2019 01:23PM by djmammo

djmammo wrote:

There is no #75. There is nothing here to shock you. Don't you hate "click bait"?


HERE is a reasonable article from Reader's Digest on the subject of researching your symptoms on line.


=======================EDITORIAL==============

I will add the following caveats that you may not see printed elsewhere as they are my personal opinions based on personal experience over the years:

A very large part of a medical education, besides learning all the rules of diagnosis, is learning all the exceptions to all the rules and their relative likelihood. Some things that appear to be benign on initial evaluation may be malignant, and the reverse is also true. An online article in a lay publication in order to be more interesting* may present a limited mix of those exceptions without a proper explanation of how often they occur in nature. Plus their goal is to pull in more readers and that can't happen if they dont include some sensational bits of information that could kill you. A medically related article in a lay publication would be boring if no one was born with a goat's head coming out of their ear.

Also, in order to avoid liability, an online publication will have to include the worst possible disease associated with any set of symptoms, no matter how rare, so that no one dies and has their family sue them for a substantial sum because the web site said "don't worry about it". Be prepared to be presented with worst case scenarios in bold type even if those scenarios are extremely rare or one of a kind. My chairman in residency, when someone would bring up such an unlikely diagnosis during a conference, would say (and I'm paraphrasing) "There has also been a case report of an immaculate conception but its not he first thing we think of".

I have been criticized for criticizing on line searching for medical advice in order to arrive at a diagnosis on one's own and that's fine with me. There are those that defend it vehemently citing the importance of being proactive and that one must be an active participant in one's healthcare, and I agree with all of them whole heartedly when it comes to disease management. However, prior to a tissue diagnosis, it seems I hear more people complain about the fear and panic generated by this practice than anything else. Also, not everybody's gut feeling is correct.

These searches are reasonable for the 'classics' like right upper quadrant pain after eating, leg pain after walking, shortness or breast going up stairs and other symptoms where the purpose of the article is to get you to see a doctor. It becomes more problematic when you have already seen a doctor and you are searching for specific x-ray findings to determine which particular type of a dozen different types of calcification is present in your breast.

The alternative to searching lay publications is searching the medical literature. Medical journals are "refereed" or" peer reviewed": "Peer review or refereed journal is an academic term for quality control. Each article published in a peer-reviewed journal was closely examined by a panel of reviewers who are experts on the article's topic." The information here is more likely true and correct. This does not happen at Vanity Fair.

But there is also a downside to reading these medical articles and that is, like mammogram reports, they are written for physicians and not for the general public. In order to understand them properly, one must be familiar with the vocabulary and underlying medical concepts of the subject at hand. Misunderstanding any word or statement can change the meaning of the article completely and either create havoc or a false sense of security neither of which is helpful.

IMO, the most consistent benefit of Googling is preparing a list of questions to ask your doctor(s).


*Recall the scene from 'The Big Chill' where Jeff Goldblum's character describes writing for People Magazine.

Board Certified Diagnostic Radiologist specializing in Breast Imaging. Contact me at DJMammo@gmail.com
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Mar 26, 2019 11:42AM - edited Mar 26, 2019 01:47PM by djmammo

santabarbarian

And well done! Once a tissue diagnosis is made it behooves one to find out as much as they can about treatment options both traditional and non-traditional, western and non-western, and how to make that choice among all the available treatment options. One must become an integral part of the 'treatment team' for the best results long term.

As related to me by my breast surgeon friends however, problems arise with those patients who consider themselves to be well informed, who are in fact the opposite, wind up impeded their own treatment. This is why it was important for your doctors let everyone on your team know that you were the real deal and to 'treat' you accordingly in both senses of that word.

Board Certified Diagnostic Radiologist specializing in Breast Imaging. Contact me at DJMammo@gmail.com
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Mar 26, 2019 04:51PM moderators wrote:

GREAT post, DJMammo -- thank you as always for the down-to-earth, practical information you so selflessly provide.

--Your Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Mar 26, 2019 09:33PM purplecat wrote:

This is excellent. Please consider stickying this post at the top of the forum!

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal Surgery Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 26, 2019 10:37PM beesie.is.out-of-office wrote:

Vanity Fair articles aren't peer reviewed?

Great article. Your conclusion sentence, in bold, is something that we all should add to our posts when we offer up information about diagnoses and treatments.

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Mar 27, 2019 05:08AM traveltext wrote:

Google saved my life.

Okay, that got you in, but it's not far off the mark because I waited three months to get my diagnosis, and it would have been longer if I hadn't Googled what was becoming increasingly severe IBC. I ended up demanding a scan which my doctor agreed to, even though she had never examined my affected breast. The surgeon took one look and quickly realised I needed an oncologist to begin with, not a surgeon. So begun treatment.

Since I live in a rural area, running to a doctor every time I had a question was not on, so I needed reassurance about any treatment plan that was offered and how side effects might be controlled. My medical team soon cottoned on that I was an informed patient, like with santabarbarian, and I believe that improved treatment supervision and made me confident I was getting top-level care. And I'd bring along to appointments some obscure bit of research that had accidently included a male patient and this would amuse the professionals.

Because I went on to patient counselling training and eventually the Project LEAD course, I'm not only good at evaluating research articles (handy when the second cancer cropped up) but I'm regulary asked to speak on male BC. Social media, especially Twitter, has a huge lot of medical professionals tweeting on breast cancer and they mix freely with keen and informed patient advocates like myself. There's even a weekly chat group: #bcsm. I have close to 1000 followers there as @malefitness

When you're a man with this disease, you really do need Google.



NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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Mar 27, 2019 06:39AM salamandra wrote:

Google is a double edged sword for sure.

But I see so many new posters here driving themselves crazy trying to determine their odds of malignancy. It's an impossible task, when even doctors would not diagnose without the scans and biopsies.

I agree that this post should be pinned - and maybe even flagged for new members who identify themselves as waiting for a diagnosis. But I'd add a couple of things:

  • Resources for help dealing with the emotional stress of the waiting. Link to online chat groups, link to a good ongoing forum post here, link to basic fact sheet that emphasizes that even if it is cancer, it is treatable and not a death sentence, etc.
  • List of activities that can be usefully done while waiting. Some people need to *do* something or feel like they're *doing* something related to their anxiety, and it's good to provide a substitute for google. Identifying an NCI designated cancer center, figuring out how to get test results sent around for first and second opinions, researching workplace accommodations or legal protections, researching insurance benefits, etc. Those are all things that will be useful in case it is cancer, and actually might be handy down the line even if it's not cancer. They feel related but hopefully shouldn't amp up anxiety the same way that googling symptoms is. And they can mostly be done online, which is a nice absorber for people
  • (Maybe even a list of top distractors - like - best phone games to absorb your brain without needing concentration! etc)


Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/18/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Mar 27, 2019 10:16AM - edited Mar 27, 2019 12:47PM by djmammo

Traveltext

Another Google success story!

I recall as a child riding my bicycle to a library in the next town over to review a 10 year old edition of Encyclopedia Britannica for a 6th grade book report so to me, the value of internet research to be able to gather recent information quickly and put it to use in a timely manner and these were the obvious benefit in your case and many others here on the forum. Well done.


========E D I T O R I A L==========

It always brakes my heart when I hear about patients who have succumbed to what I refer to as 'Google Paralysis' a kind of panic disorder that in its worse form, will actually delay patients seeing their doctor for fear of finding out they have the rarest of incurable medical conditions for their age and gender just because a 19 year old on-line-magazine intern had to beat a deadline for posting their article on "The 7 Deadliest Medical Conditions That Have No Symptoms" and doesn't fully explain how unusual it would be to come down with malaria in Cleveland without ever having left the country.

Since joining this forum, I have read too many posts that describe the worst kind of mental anguish that members have endured all because of an article they have read online and these posts seem to pop up every day (see my previous Google-related rant).

The basic problem with this situation IMHO is also the basic problem of practicing medicine in any specialty in a litigious society like ours: Physicians can never say "You don't have that" even if its true without solid proof and in this country that proof costs a few billion dollars a year nationwide in the form of imaging and laboratory tests.

In the pre-technology days of the 50's and 60's my father would see patients who came to him complaining of symptoms like headache, fever, stomach pain, chest pain, leg cramps etc. and after taking a complete history and performing a complete physical exam decisions were made and actions were taken based on the doctor's training and experience, along with a few lab tests and simple x-rays. By now you are all familiar with the med school saying "when you hear hoofbeats think horses not zebra" and this was the acceptable approach at the time and there was an 'acceptable' miss-rate.

In my era, CT and MRI were introduced. During these new 'high tech" times of increased diagnostic accuracy, patients still presented with a set of symptoms, but now after the history and physical you were sent for a CAT scan 'just to make sure'. This became a fairly routine defensive practice since no one wants to hear an attorney call and say "Mrs Jones is dead, why didn't you get a CAT scan?" The phrase had to be modified to "when you hear hoofbeats think horses but first scan for zebras".

Recently my daughter has introduced me to the concept of 'Cyberchondria', basically a Google-induced hypochondria (the old term for Health Anxiety). She tells me that after a thourough internet search, some patients now present with a chief complaint of "I'm pretty sure I have Rare Zebra Disease #2". So now no matter how reflexively you want to say "You don't have that" a full work up must ensue or both of you will face the consequences of missing that unlikely diagnosis. Now this by no means applies to all patients, but this small subset of patients is large enough to be written about in peer reviewed medical journals (Here is a list of those articles).

Not to make light of this condition, but this brings to mind the scene from Woody Allen's movie Hannah and her Sisters where Woody reminds his co-worker Julie Kavner of his recent health scare involving a large irregular black spot he found on his back and she reminds him "It was on your shirt!".

I think it was Freud that said "Sometimes a rash is just a rash" to which the Internet now replies "...except when its IBC" and this has become the problem we need to solve.

Board Certified Diagnostic Radiologist specializing in Breast Imaging. Contact me at DJMammo@gmail.com
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Mar 27, 2019 10:59AM - edited Mar 27, 2019 11:00AM by MsRukia

DJ Mamo you are so right! Thank you for your common sense. My partner had to remind me that I've done sufficient research as did my doc and now I have to wait. I have a medically complex child so I've gotten used to having to read things to understand her conditions and treatment options. It is such a fine balance between reasearching enough to have a good conversation with the doctor and freaking yourself out. So far in this process I've had two rough days. I'm thankful for reminders that I have a 70%ish chance of being fine

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Mar 27, 2019 11:03AM kbeee wrote:

Amen! Add to that the ads from drug companies...I heard one on the radio yesterday urging people to educate your doctor that symptom X is probably this, and you need this to alleviate your symptoms. I am pretty sure the doctor does not need to be educated on that, and can look at the symptoms and work to find an appropriate diagnosis and treatment.

Educating yourself and advocating for yourself is very important (saved my daughter's life when I had vasa previa), but you have to understand what you're reading, take into account the source (if it is from a drug company it is not unbiased) and if you're reading research, you need to clearly understand statistics and the language of researchers. If not, ask someone who knows this to help interpret it and apply it to your particular situation.

The same goes for radiology and pathology results. I always get a copy of those and think others should too, but people need to remember that these are written by doctors for doctors, and are in specific language common to that field. People criticize their use of words because they can't understand them.......they are not written for the lay person; a doctor can interpret it for you!!!!!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 8/26/2013 Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (Left); Reconstruction (Right) Surgery 1/29/2015 Lumpectomy; Lumpectomy (Right) Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- Surgery 2/25/2015 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 27, 2019 11:39AM kber wrote:

Google is like any tool - you have to know how to use it effectively and safely.  After all, Google likely brought most of us here to this site and has allowed me to formulate better questions and, I'm convinced, receive better care.  But you need to know how to separate fact from fiction and hope from hype.  In that, it's no different from what you might see on the nightly news or read in the NYTimes.  

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/7/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/28/2019 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right) Radiation Therapy 7/17/2019 Whole breast: Breast, Lymph nodes, Chest wall

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