Have cancer? Why yes! See a real doctor! Absolutely! Except what happens when your PCP ignores and neglects to mention your sky high WBC counts for FOUR YEARS - and nothing there is online for a patient to look at to figure it out for themselves. It takes getting a hip replacement to discover that you have cancer. And then while trying to get cleared for surgery and wondering what the blank to do about having cancer the PCP says “well I can refer you to an oncologist if you want.” Ya think? Ugh.
I only know H had these wbc for 4 years because my aunt (the retired anesthesiologist) insisted I get copies of all his records to take the the cancer center. I read them then. Yeah - I like being able to see the numbers and reports myself.
Fair. I had elevated PSAs. Did not know. Did not go to the Dr. annually and that’s my bad. 4 years later, I went for something else and a sky high PSA was found. It’s my bad but no follow up calls that we need to follow up ?
I went Friday to an endocrinologist because my wife saw something (a trend to below normal) in my bloodwork and she emailed my radiation oncologist who is now my urologist.
He then recommended I see an endocrinologist, but if not for my wife, would he have ? Maybe if this # went down next time. Maybe not ??
So I get the checking records and all that. But I leave that for my better half. Turns out, she does love me :). Honestly, she takes care of the entire family. We’d be medically lost without her - a place I like but as I get older, clearly that’s not a good place to be.
H went every year for his physical. They had been sky high 4 years prior - they only gave me the last 4 years, so it could have been longer - and every single year they increased. Not one word. And no - he does not go back any longer.
I have so many stories similar to this with various doctors in our area from friends and coworkers. I want all the info I can get myself. I’m all for regular medicine. I just want to make sure what the doctors say jive with regular practices.
So it’s not my favorite thing for patients to go on Reddit etc and attempt to learn about someone’s else’s experience but I get it.
To throw a wrench in all of this in the medical AI world we discuss AI being part of the care team. The question is what can we learn from AI and not fight it. No one uses Chat gpt. Even Chat clinician /health is pretty bad. Most everyone uses Anthropic Claude when building (and many other tools) for medicine Microsoft Copilot is actually pretty good and Google Gemini is also not bad.
Be careful how you ask your questions. It sorta wants to please you. Asking very detailed questions will yield a more accurate answer. Ask it to answer you like a doctor or researcher etc. Ask it to give you evidence. So Open Evidence is one tool doctors do use. But it’s pharma driven also but you will probably get better answers to medical questions with citations to look up.
The question is when will we be able to “trust” AI in making the decisions /diagnosis. It’s coming sooner then most think. This is why we need to accept it being one part of the care team.
Back in the day, we had a copy of a giant book called the AMA Family Medical Guide and used it to research symptoms, among other things. There were decision trees and just about every possible symptom could lead to a fatal diagnosis. Headache? Brain Tumor. Stomach ache? Compacted bowel. And so on.
At present I’ve just been using Google AI to copy/paste lab/MRI results then keep adding info as it suggests more input. It helps me understand the language much better than looking up each individual finding like in the past.
PSA’s value for screening for prostate cancer is controversial and probably should not be done by default – meaning your physician should talk to you about what various ranges mean and potential follow ups before ordering it.
In general, it does not seem like a good practice to order a test and then not talk to (or otherwise inform) the patient about the meaning and potential follow up if the result is one that is out of the healthy range or is otherwise unexpected.
@ucbalumnus Actually, no. You can see the date and time dictated on the report, and it is always within 24 hours, but usually sooner. I have wondered if it was to give the ordering provider time to see results, but that is just a guess. My husband was always able to see the results as a staff physician, they just aren’t visible to the patient.
The issues that I face are far less serious than those you describe @snowball. But, I have found a lot of success not with Google but with Gemini.
I created a health and exercise AI agent that has provided extremely helpful advice on a number of medical questions I have had. To get really useful advice from AI, one needs to give it as much context as possible. I downloaded my entire medical record from EPIC for as far back as I could get digital records. I uploaded that into the health and exercise coach. I provide it with detailed data on my daily indoor and outdoor cycling and heart rate data for my core training and my TRX training plus blood pressure and weigh/BMI measurements from connected devices.
With all that data, my AI coach came up with the correct diagnosis more quickly than my concierge PCP. I asked for differential diagnoses and it came up with the same diagnoses that my PCP came up with. It explained from the battery of tests that were being done which tests would rule out the differential diagnoses and why. I tried to get my PCP to treat me quickly for the diagnosis that Gemini had come up and felt was most likely with while waiting for tests fore the other, much lower probability diagnoses. She would not. That led to another complication that then had to be treated with a couple of courses of prednisone. We had over a friend who is a Harvard Medical School professor and a data nerd like me. He and I interrogated my health and exercise AI agent about my related conditions and he was astounded at how sophisticated and accurate it was and how it drew on very disparate areas of medicine that very few individual doctors could do so without their own research into various topics.
I still check everything with my doctor because I worry that Gemini will be way off base. So far, although Gemini can be ooverly cautious, it has been spot on and has not been off base.
So yes Gemini, Googles version of AI is good. You’re an advance user. This is what I /we are talking about with patients becoming more sophisticated in their own search of their health. What do we “trust”.
Here is a great kinda fun discussion of this very subject last week and the kinda discussion that is happening. I don’t know if I would of used your own treatment plan but doctors need to swallow their egos and maybe put that information your providing into their own systems and see the results. This is a lively discussion and drives the point home from both sides.
First off if I am side tracking this discussion OP let me know. Not my intent. Secondly when I was a residency director and/or teaching residents past that time I always told the doctors to “listen” to the patients. Always! I learned this the hard way when a patient wanted an MRI for something but my triple board certifications told me not to. The patient was correct and went elsewhere and got the MRI and I heard about it. Patient called the office and told me. Since that experience a million year’s ago whenever a patient suggested something like this I ordered it. Guess what. The patient seemed to be almost 100% correct. Patients know their bodies but dont have the medical background to support it but they do know. AI has given patients another tool to better understand their symptoms. But getting the full understanding is hopefully where your doctor comes in. I have my sister’s in from out of town and I get to hear all the stuff they researched about their labs etc. But even with all this new information their ability to synthesize the information is extremely limited. This is where you can ask AI to explain it to you as a 6 grader or something like that.
Also don’t walk into your doctor’s office with all this information and go “now what”. Please send it ahead of time. They also need to synthesize the information and maybe look up other thing’s. This really shouldn’t done in your 15 minute visit as they are stressed as well. I used to have patients come in with 70 page My-Charts and want me to go through it while all the other patients waited. Uh no. If they told us and we ask we would have told them to send it ahead of time or drop it off ahead of time like day’s not hour’s ahead of time. If you want a proper diagnosis then everyone needs the time to evaluate the information given.
Let me start by saying for the most part I loved my cancer team. However, I had one oncologist who refused to listen . I had a very adverse reaction to a cancer drug that she wanted me to take for a minimum of 5 years - I didn’t make it three months. I was having horrible side effects that impacted daily life and I did a lot of dr. Googling. I found it reassuring that I wasn’t just losing my mind or experiencing a reoccurrence. She kept insisting that she’s never heard of those side effects. Really, because here they are in black and white. They weren’t common side effects, but I found a forum where so many women were suffering the same as me. They were also being ignored.
One of my kids used to work in Google Cloud AI Healthcare. I told him if what they were doing was going to help the doctors with differential diagnoses, that’d great, but if hospitals were going to use it to deny care and/or deny/delay a doctor to doctor review, he had gone to the dark side.
I didn’t get the impression that anyone posting here did not trust their doctors or believe in their care plans (at least for the most part). There is a big difference between doing some research on accepted medical sites, which is what most here are advocating, and choosing to ignore sound medical advice for an untested treatment out of the country. We had a recent experience with DH in which listening to the covering doctor was not the right advice, as was confirmed when the regular doctor heard about the situation. It is not life threatening but a breakdown in communication in the office.
So I did use google AI the other day–to give me the words and arguments to convince a friend to get a second opinion. It was great! Came out with specific phrases to use and a whole page of good reasons to pursue second opinions including that even doctors get second opinions.
