Comment by baggachipz
4 days ago
The first point is by far the most important. The US healthcare system (and probably others) is an unfeeling machine and you have to treat it that way. Ask for earlier appointments, cancellations, and referrals to other specialists. Navigate it as if nobody knows (or cares) what you're up to. Doctors tend to only exist within their silo and it's often on you to request a different type of doctor or even another one of the same type. Be a pain in the ass, your survival may depend on it.
Personal story: I was having trouble using my left arm. Like, couldn't lift or type or do much of anything with it. Was told it was a pinched nerve by physiatrists and orthopedists, despite having no pain. Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex. We were able to move quickly and get me on a treatment plan which has bought me a lot of time. Had I not advocated for myself, it would have probably mutated into a much worse type and killed me soon.
I had to quite literally sit in a doctor's office and make a public nuisance of myself to get a referral for a family member to a specialist for cancer when the regular doctor said it was just back pain. Then I drove the 2 hours to their office to get the appointment. It was lymphoma.
People can't ignore you as effectively if you're in their physical space. When it comes to your health or the health of your family, do not back down. Doctors are used to nuts who googled the symptoms or joined a Facebook group and have all the answers already. Make it clear you have NO answers but NEED them asap.
I've had similar experiences. It's kind of terrifying, actually, you have to walk the line of being annoying enough to get what you want but not so annoying they completely ignore you.
One of the things I've learned is to apply the Socratic method, preferably in front of their colleagues if they try to brush you off. Also, if you've got scary symptoms, demand they write down what your symptoms are on your record and why they aren't concerned, then demand a copy of all relevant records (it's your property) -- this often gets them to reevaluate your risk in terms of their career.
Worst case scenario, you can make up medical history. I had a family member pass recently from colorectal cancer. They had symptoms but their PCP kept insisting they were too young. My family member suddenly "remembered" her aunt died of CRC when she was a kid. This got her referred to a gastroenterologist, and they found out she was stage 4...after her PCP delayed her diagnosis for like a year. She actually had grounds for a malpractice suit but who's got the energy or money for that when they're fighting stage 4 cancer?
Also, know your state's agency responsible for policing health insurance. This family member's insurance company routinely tried to deny life saving procedures, but a call to the right govt agency set them in line each time.
This is something I don't understand of the US and other "developed" countries health systems.
Here in Mexico, i can get to doctoralia and make an appointment with a high specialist , like a Vascular Neurosurgeon. All by myself. The first visit will to maybe $200 usd (and that's very high) and normally it's a week away at most. No waiting on the private health option.
Of course if you go with public health, it's a disaster and a shame.
What other countries describe is the equivalent of your public health system. If you're willing to pay out of pocket, like you describe, you can have a similar experience in the US. However, that can get expensive quickly since you normally don't have just one appointment with a vascular neurosurgeon.
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For most things, I can do the same in the US. It has a lot to do with your insurance provider. E.g. UnitedHealth is pretty well known for requiring pre-authorization for every little thing. But BCBS, which is who I have had most of my adult life, is far more relaxed about it.
A lot of of specialists will _only_ take patients by referral unless you can prove you have the condition. This was my struggle. I had to wait and wait until my doctor specifically referred me to that doctor. I called before he did and they wouldn't even give me the time of day without a diagnosis.
More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.
All the best for your family member!
> Doctors are used to nuts who googled the symptoms
When you were there, did you have anything else to come with than the symptoms of your family member? In other words, how did you look different to the doctor than somebody who just googled their symptoms? (Or, to put it differently, without meaning disrespect, in which way were actually different from cases you referred to in the above quote?)
I used the doctor's words. I had them chart EVERYTHING and got a copy of the chart. I then highlighted the oddball items and wrote out the history of cancers in the family. I also showed that the family member had no history of back problems, no abnormal development to cause it, and hadn't done anything lifting or otherwise to cause it.
And then I sat in the nurses station until the doctor finally took time to listen. They threatened to get security, but I just kept my head and kept pointing at the things the doctor himself wrote.
I didn't try to interpret anything, I didn't do any diagnosing myself and I didn't try to act like he didn't know what he was doing. I just kept saying that it was more serious and we needed a second opinion.
Does that help?
I have a similar but more benign story, and cannot emphasize enough how correct this comment is. I had severe abdominal pain and vomiting. My PCP told me it was GERD and I should lose weight. Two days later I was getting an emergency cholecystectomy because my gall bladder had necrotized.
A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.
If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.
Been gone through something similar. It's important to be persistent. My PET-CT was originally scheduled for 6 weeks, and they couldn't get it sooner. I had to call every imaging labs within 50-100 miles radius, eventually got one within the next couple of days.
The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it. I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.
The treatment sucks, but small price to pay considering I can spend more time with my family.
> I was able to get ahold of the chief surgeon at UCSF
And people like this are typically not that difficult to get in contact with via email.
Hell, I’ve successfully used LinkedIn to get an appointment when calling the main office didn’t work.
Get creative and trust no one.
NPC is not rare even among not Asian-descent people, it’s just poorly documented; I lost my brother to it in July and we don’t have anybody coming from Asia our ancestry, that we know of. The doctor did said “there are only 20 cases of this in the world” after citing a paper where the sample size was 20. He did not order genetical tests nor tests for biomarkers for modern drugs. “Standard of care” my brother got in the US is from the 80s and it was unconnected to the molecular biology of his cancer (there has been a lot of relevant research in the last 20 years), but the doctors will subject you to it before even allowing you to access the better, most modern options. In my brother’s case, the standard of care treatment put fuel into his process instead of slowing it down, and by the time immunotherapies and other options were considered, it was already too late.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
Thank you. So sorry to what happened with your brother. I agree with you, NPC is not rare. I know at least 3 people on my network that have them.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV). My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
I've been daydreaming about starting a US company around the idea of being able to hire a "medical coach".
Not a doctor, and not a case worker, but someone with a deep knowledge of the American health care system and infinite patience. A trusted person to take you to and from appointments, to chat with you about how things are going, and handle paperwork.
It would be expensive, but I think it would pencil out for most working professionals who don't have the time or energy to navigate everything for themselves or for a loved one.
jesus that is so dystopian...what a cold world we live in...
The number one thing I tell anyone who is going through any sort of medical situation that requires extensive care, you have to be the biggest advocate for your care. If youre not comfortable doing that, then find a loved one who will stand by your side and be that person. Healthcare is a business and you need to treat it with the same vigor you tackle business problems because your issue is a business problem to them.
Don’t forget, Doctors are just well read mechanics
> Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex.
Oh my. I did not expect this.
I'm glad you caught it early, and I hope you have the best outcome you can, and thank you for sharing your story.
If you've dealt with the American medical system then stories like this aren't very surprising. I'm not going to act like this is everyone's story (a lot of people have pretty smooth experiences) but it happens a lot more often than it should.
It's not unique to America. Specialists are in high demand everywhere and seeing them means you have to pass through a screen of generalists who first rule out all the common explanations for your symptoms.
But GP's point is otherwise true. It's just a job to them. They see dozens of sick people every day. There's no way to be empathetically engaged with all of them or really any of them and still be effective. It's not personal, and they aren't ignoring you. You're a bug report in their ticket system. Understand that and you'll be able to deal with the system more effectively.
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> “Doctors tend to only exist within their silo”
"""There was not enough of the patient to go around, and specialists pushed forward in line with raw tempers and snapped at their colleagues in front to hurry up and give somebody else a chance. A colonel with a large forehead and horn-rimmed glasses soon arrived at a diagnosis. “It’s meningitis,” he called out emphatically, waving the others back. “Although Lord knows there’s not the slightest reason for thinking so.” “Then why pick meningitis?” inquired a major with a suave chuckle. “Why not, let’s say, acute nephritis?” “Because I’m a meningitis man, that’s why, and not an acute- nephritis man,” retorted the colonel. “And I’m not going to give him up to any of you kidney birds without a struggle. I was here first.”""" - Catch 22, by Joseph Heller.
I became close friends with a doctor over the past couple years and she's an extremely caring and diligent person. Truly wonderful went into it for the right reasons.
By all accounts is amazing to her patients, but god the amount of work thrown at a PCP and the deluge of emails and just how little life the system gives you (at least while in residency, I guess I'll see what happens after)... like I have to imagine our care could be so much better if we weren't trying to optimize the system and had more resources.
My mom is a teacher and it's similar there, she loves kids so much and after a few decades she absolutely cannot wait to be done. She was excellent at the start of her career and got kudos from absolutely everyone but now she's just getting by until retirement because she can't take it anymore.
I had a heart condition (myocarditis) recently after a viral episode, despite the obvious prognosis the ER doctor treated me for a heart attack instead without consulting a cardiologist which sent me to the ICU.
I should have mistrusted the doctor and trusted the AIs more, unless they gave me compelling reasoning. Don’t give up your decisions to anyone, incompetence is abound.
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> It's worse everywhere else.
You’ve dealt with every health system on earth as a patient?
> There are no specialists in all of the government-run systems
This is completely inaccurate. Every government run system has specialists.
Everything you have said is incorrect.
It's an over generalization but think this person has a point. The US health system has it problems (cost!!), but have read that since it's money driven instead of a government service, compared to other healthcare systems, it's often got a shorter wait time to see a doctor. This makes sense, a lot of students want to become doctors in the US, because they can make a lot of money
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> Canada introduced MAID for this reason.
No they didn't.
There are tons of specialists in Canada. You're talking out of your ass.
>It's worse everywhere else. There are no specialists in all of the government-run systems I've dealt with and at some point, you really have no options left.
>Canada introduced MAID for this reason.
What is it with Americans being so confidently ignorant about everything?
Canada introduced MAID because someone who wanted MAID sued the government and asserted that banning MAID violated their constitutional rights. It went all the way to the supreme court, and the (federal) government fought tooth and nail AGAINST allowing MAID.
It should be noted that the Provinces are responsible for healthcare, but it was the federal government who banned MAID prior to the 2015 supreme court case via the criminal code.
So, in short, stay in your lane. You have no idea what you're talking about.