When Dr. Google is not enough and you want first hand experiences!

Parent Cafe
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I have had a busy couple of weeks with my own health and my mother’s. While I trust my doctors, I find myself online searching for more information and never get to the bottom of the rabbit hole. We have individual threads for a few medical issues that many of us deal with, so I was thinking maybe we could have a more generic one. A place to see if others have been in our shoes and maybe offer advice, questions to think about and/or to ask our physicians, where to receive more information; anything that will help us advocate for ourselves.

My closest friend and I have said we are now those old people that discuss our health issues! As least we currently only tell each other; it is not dinner conversation with the entire table, yet!:wink:

I will post my personal concern once back home and on my computer. Hopefully others will chime in and this thread will help.

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The first thing the cancer Dr. told me was, don’t go on the internet - I wish I listened.

I spoke yesterday to an Endocrinologist about a different issue and they said the same. Let us take your blood, run tests, and it can be any # of things.

So I’m out on medical online research.

I thought I was going to die but two years later thankfully I’m still here.

We have doctors for a reason. It’s definitely art and science, not just science, but if you go on line, you’d probably think you’d die from having an ingrown toe nail.

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You are very right - and so are your docs to a large degree. None the less, that info highway is RIGHT. THERE. At your fingertips. Just like you want all the resources in health care to tend to your needs so you can get back to health, I think it’s also human nature to want information resources.
Before the internet, I’m guessing those “resources” were calling your best friend who had the same condition, talking to family members, chatting with neighbors, maybe having more or longer chats with the doctor in the exam room.

We also have to recognize that methods change - and even for docs - the most highly skilled resources at our fingertips, treatment can be gathering info to help determine the right steps for that particular patient.

Maybe that’s the advice - when you search on the internet you are going to read info about a particular patient or a group of patients - that patient is NOT YOU. You have your own set of conditions favorable or not that may apply to your situation.

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@tsbna44 First, very happy to hear about your positive experience and wishing you continued good health. For me, though, I don’t agree with that doctor’s advice, though I certainly honor that different individuals can have different experiences and favor different approaches.

The first thing I don’t like is the assumption that you’ll simply scare yourself by reading dire results, or find bad information. Both of those things are possible, but both can be dealt with. Bad information means more research is necessary; dire prognoses are different, but I think reading more about odds and specific details and choices can help put them in perspective.

More centrally, doctors are not fallible, do not have all the information, and aren’t necessary the best available. All those things may or may not make a difference.

When my H (former doc and really smart guy) was diagnosed with cancer, the information and choices offered by his initial doc were fairly limited. We did a lot of research and found a cancer center not too far away, and more research convinced H to try to get in with the head of the department, which opened up a lot of opportunities including him being an incredibly skilled surgeon, and involved with studies which H was enrolled in. Additionally, he and his team welcome any questions we have from our own reading and research.

I really worry that if we stayed with the limited choices the initial doctor offered, including simply the surgeons in her group, his recovery and prognosis could have been affected.

I’ll also say that we got amazing amounts of really outstanding advice from the Reddit group for his particular cancer. The people there routinely exchange fact-based and experience-based advice, both for treatment choices and for day to day dealing with treatments and side effects.

Again, for some people, only listening to their particular doctor might work best, but I’m leery of any doctor that blanket advises that.

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Absolutely and there are great sources out there.

I think what happens is - there may be a decent prognosis but also a horrible one, and naturally people may run to the horrible one.

The other issue is insurance - you need this - until insurance decides you don’t.

I had radiation therapy. Honestly, the 5th and last dr. I met with, I chose him. He was a PhD / MD, into research and had a phase three drug trial - that he couldn’t assure but I ended up chosen for. But we saw him because a doctor at the Proton radiation clinic discussed a “balloon” he uses on everyone. The local Vandy guy said - it can be done but I don’t do it. You need to see Dr. Doogie Howser up at the Vandy main hospital.

When we saw the doc at the main hosptial, he said - yes, I do it but i would never do it on you - because it could push the cancer outside because the tumor is at the edge.

So you have a proton guy who does on everyone. Insurance wouldn’t cover but I was willing to go out of pocket given its life impact.

But the Vandy guy saying - ehhhh - I don’t agree with the Proton guy. He looked at my case vs. everyone - and I just felt comfortable, even though he was just traditional radiation and not cutting edge.

I never actually looked up the balloon on line although I imagine my better half did.

Who knows who is right - but you get different guidance from different doctors. Maybe both are right - or somewhat right.

And the net might say something different.

Everyone needs to choose what’s best for them - and if they are happy, including using Dr. Google (and there are some very reputable sites) - that’s good too.

My issue was b4 I even had consults - I had myself 6 feet under. Even now, the doc says I have an 87% chance of living 15 years - which honestly, is not great odds. I mean, 1/7 I don’t…scary.

Thanks for your well wishes and I hope everyone finds the “info” strategy and cure that works for them.

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To be honest, before my husband passed away 3 years ago, I never had to think about medical issues. He was a physician and had friends in all areas. If any family member needed advice, he took over. If someone mentioned a problem they were having, he would be researching on his medical sites, and/or checking with a buddy in that field. While somewhat embarrassed to say it now, when I was diagnosed with breast cancer in my early 30s, I let him handle everything and make the decisions. Of course we discussed the options, but I trusted him to make the best choice.

Now, I get/have to make all the decisions for myself and my mother, while second guessing myself along the way. When 2 specialists and PCP tell you that unintentional weight loss of 5% isn’t a red flag, that doesn’t stop my brain from going elsewhere. Being BRCA+ and a family history of pancreatic cancer, I am followed by a pancreatic team. One of the many signs of pancreatic cancer could be weight loss, and stool descriptions I won’t go into! The thought was that my yearly abdominal MRI 2 months ago was clear, so all should be good. It took my PCP to suggest we go ahead with a CT, just to make sure.

I am aware IF I were to get pancreatic cancer, it would be caught very early, but it doesn’t stop me from worrying about my problems being that, or something entirely different. I do think part of my obsession is stress related due to having to deal with my mother’s care also. I will feel better once the CT comes back with nothing on it of concern!

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Glad you are taking care of yourself and your mom @snowball.
I do agree that getting input from multiple sources is helpful, if not highly recommended. That said, sometimes one can get very helpful or very unhelpful advice from well meaning people. I got some incredibly helpful list of doctors, resources, organizations, etc., for a friend of mine who was recently diagnosed with a somewhat rare but aggressive cancer from someone here on CC who has been dealing with it. But my friend who got the recent diagnosis, also got some, unfortunately, not good advice from her personal friend, a retired general practitioner, about some short-term treatment plans and apparently that has now eliminated one of the cancer center resources she would’ve liked to have had a consult with. She had an appointment scheduled with them but her friend recommended she wait and do something else first and that turned out to be bad advice, although well intentioned. Certainly hearing people’s individual experiences is helpful, but personally, I would take that as one piece of the overall exploratory/diagnostic treatment planning. When my friend reached out to the foundation that exists for her type of cancer, the first thing they told her was not to pay attention to the statistics she reads on line .

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@snowball, sorry to see you here dealing with something! Glad you are staying on top of it!

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Once you have a diagnosis, it is easier to find info. (Usually searching by symptoms alone just brings up too many scary possibilities.) But… there is such a variety of cases, dr approaches etc that even then that online info can be misleading.

For this College Confidential group, I think we maybe could just treat it like college research. You can get some helpful data points and learn about important factors from online research. But it’s just part of a broader journey.

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Some of the problem today is that when we have tests or lab work, we often get the results in our MyChart hours or sometimes days before we get a notification from our doctor. It’s hard not to do some searching on our own.

I have a friend who had cardiac issues and ended up with bypass surgery. She was in the hospital having all the tests and receiving results in her MyChart within 30 minutes of each test. Her doctor didn’t do rounds until the end of the day, so she copied all the results into ChatGPT and got a comprehensive interpretation of the results as well as treatment recommendations. When her doctor came around, his conclusions and recommendations mirrored Chat GPT’s. I know AI makes errors and shouldn’t be solely relied on for medical advice but giving patients almost instant access to test results maximizes the probability that people will explore on their own.

I had an MRI recently for a (thankfully) non-life-threatening medical issue. I have yet to hear from my doctor, but I did put the results into ChatGPT so I could understand what they meant and what the possible next steps could be (surgery or PT). I feel like I am more informed and will be able to ask better questions when I do hear from my doctor. I also found people on social media who have recently had the surgery that I would have and it’s been extremely helpful to hear their experiences.

When/if it’s something life-threatening, I would absolutely seek a 2nd opinion. In those cases, I would think it’s important to find a medical team who you trust completely.

Here’s hoping we all remain as healthy as we can for as long as we can and find the answers that we need.

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Using AI for my test results has been wonderful. With my holter monitor, the write up sounded pretty iffy to me. Threw it into AI which said it was not unusual and not to worry over. Same when I got my echocardiogram results. I felt good about the normal parts, but then It listed all sorts of measurements. Threw that into AI which said it was normal. Helped bring down the anxiety before the nurse called later. And I often find the nurses don’t really know much. She just told me the doctor said I was fine and to come back in 6 months. If I pressed about any questions, she couldn’t answer them. Glad I had AI/google.

Same when H was going through the initial CLL stuff. I did a lot of research with Google and saw where 2 blood markers seem to show if the cancer would be slower to progress and less likely to need treatment down the road. H was good for both of those. Nice to know while waiting the 1-2 months before your appointment.

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I have a friend who is an oncologist and finds it very frustrating that the results come in before he has time to review and that patients think the doctor has seen the results at the same time. The doctors are busy with others and the results sometimes go to the patient chart before they doctors get them.

OTOH, I know someone undergoing treatement that has been very upset at having to wait several days for the doctor to review test results and go over them with her.

Research on the internet can be great, yet can also induce a lot of anxiety. While one can understand that 90% of the time the cause may be nothing signficant, hard not to focus on the 10% or 1% of bad findings. Reading the Diagnosis column in the NY Times it really shows that there can be times when people can go for years without being properly diagnosed. i know it can drive doctor’s crazy when patients come in with their own diagnosis from Dr. Google.

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As soon as I find a doctor whose name is God, I will stop googling or asking others about test results. Doctors don’t know everything (nor can they be expected to). I have known people who were told that their issue was nothing to worry about, only to find out down the road that they actually should have been worried about it (my friend’s mom died of uterine cancer because her doctor told her not to worry about her symptoms). My neighbor is still alive more than 2 years after he was supposed to die from pancreatic cancer, because he found a doctor who was willing to help him explore drug trials. My mom moved to Florida at 65, and the “highly recommended” gynecologist she went to told her he would have removed her ovaries had he done her hysterectomy, because she “didn’t need” them (she found a new doctor). Dr. Google and the experiences of others can be very helpful in spurring us to advocate for ourselves.

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I should add to my above comments that my H is a former doc. He was a pediatrician, but still, 20 years later, he still gets questions from friends and relatives about a variety of issues. I run everything that my doc says, that’s in my test results, or that I read online, by him. I am lucky to have that resource.

However, and this is a big one, he regularly is dismayed by the lack of knowledge or attention paid by other doctors. You can only go by how much you believe me, but back when he worked in a hospital, he was informally known as House, because he could figure out diagnoses no one else did (not just pediatric). This was first because he is a really really smart guy (trust me on this), but more because he used his smarts for critical thinking, not just assuming he knew everything. He read extensively any time he wasn’t sure of something. He knew what he knew and what he didn’t know. He paid attention. He listened, really listened, to patients.

He went to ridiculous lengths to make sure he got it right. I have been frequently disappointed that all doctors aren’t THAT thorough, and also that many are not particularly bright (I had this idea when young that you had to be a genius to be a doctor. LOL).

Anyway, my point is that not assuming the doctor knows everything is a good thing. Especially when he or she thinks she does.

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I personal like seeing my results in my chart, even before hearing from the doctor. It allows me time to review, look up terms I might be unfamiliar, and formulate questions. Yes, there have been times it might increase my worries, but more times than not, seeing my results have reduced my worries.

One of my hospital systems keeps radiology scans pending, sometimes as long as 10 days; the other system, they are in as soon as they are read by the radiologist. My husband was on staff at the one with the delay, so I was still able to get my result immediately as he could pull them up. Now I am an normal Joe and have to wait like everyone else!

When mom fell 2 weeks ago, other than xrays and CT of the areas she said hurt, the ER did absolutely nothing. They pulled her from the waiting room several times for scans and brought her back. The next day I was able to get her in to see her ophthalmologist, and orthopedist to evaluate her. While the care plan did not change, nothing was explained, like the seriousness of her optical fracture; had I not seen the CT report myself while in the ER, I would have had no idea. The ER did a treat and street on a 95 year old. While she was there due to a fall, it might have been worth while to put this elderly patient with CHF on a monitor. :woman_shrugging: They didn’t even look at her scraps to make sure nothing needed stitches. She had on white pants that were covered in blood; you couldn’t miss where she was bleeding! After asking the nurse might someone want to clean her up and check the areas, she came with a can of saline and one gauze; spray the 3 areas, and barely wiped. At this point, I wanted to get her home, so let it go.

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Yep. And I can understand doctors being frustrated when a person comes in 100% sure they know what’s wrong and won’t listen to a doctor. But, I’m lucky if I get 10 min of a doctor’s time. Most of the time they don’t even know why I’m there when I walk in the door - despite telling half a dozen other people up to that point and filling out a million forms. Is it realistic to think they going to know exactly what’s wrong in 5–10 min?

Googling and researching results ahead of time can help me be prepared with questions.

And I’ve got plenty of stories of bad diagnoses/no diagnoses as well.

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And so some of the comments above also point to the fact that docs cannot get back to patients in a timely manner after results are in because the pressure/expectations of health systems and maybe the insurance system is for them to be lined up from wee morning to night with patients one after another whether primary care or specialty. Expectations for well care visits to literally be on a “minute” defined schedule.

Docs Can be spending 8-10 hours a day seeing/treating patients face to face. Is it realistic to expect them to “fit in” analyzing test or lab results for another # of hours? Who knows how many “MyChart” results are waiting for them on a regular basis!

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Ever been to the funeral of someone whose distrust of the “medical establishment” was so significant that they opted for “a top notch clinic” in a third world country? When not one, not two, but THREE oncologists said “you need surgery, then chemo, possibly radiation but your 5 year survival rate is likely outstanding- we treat cancers like yours every day”? And that friend did a hyperbaric chamber/anti-oxidant, vegan regime (since “everyone knows” that cancer is caused by inflammation) and 18 months later her minor children had the “honor” of escorting her casket to her burial?

I have. Don’t want to do it again. I totally understand the skepticism being expressed here. Yes, there are incompetent doctors, and lazy doctors, and “I’m too important to ask a colleague” doctors. But don’t forget that there are vulnerable people in the world who believe everything they read online (except for messages from credible, experienced public health professionals and physicians and epidemiologists). I could fill a school bus with people I know IRL who have tried “do it yourself” cancer treatment, and most of them FINALLY end up doing the hated, “why give money to big pharma when you can support a holistic healer in Guatemala” surgery, chemo, radiation, then Tamoxifen or whatever maintenance is required. Early stage colon cancer-- see a real doctor. Early stage breast cancer- understand exactly what type you have before you jet off for your anti-establishment journey. Prostate cancer- that one is a no-brainer. Yeah, the side effects can be cruel. But you’d rather be dead by ignoring your physician’s advice? Apparently yes- many men would rather be dead.

It saddens me that our “low trust” society has leaked into the medical sphere. I just read about a pregnant woman who insisted on an “unattended birth” which is apparently a thing and now her husband is raising an infant by himself. Our great-grandmothers heralded an attended birth as a miracle- especially when the attendant was a trained nurse, midwife or physician and not their neighbors teenage daughter who had a strong stomach and no gag reflex. And now young women think that delivering on the kitchen floor is some great breakthrough?

So temper the skepticism. Yeah, get multiple opinions before surgery. But most doctors are conscientious, even if they can’t phone you with “good news, your scans are clear” before you can see the scans in your online med records.

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I understand what you’re saying, and I agree. I am not skeptical of doctors in general or the medical establishment. I just think that there are often more ways to look at things than one particular doctor might be seeing. I do, however, lean toward finding another medical professional for other options.

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I hope nothing I have said has led you to believe I’m anti medical establishment. Actually I haven’t seen any comment here that reads that way, but maybe I missed them. There’s an enormous gap between gathering credible information and going to quacks. No one here has advocated for the latter.

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